Today's gift is the 'pool' .
After being in the car yesterday for 16 hours all my daughter wanted was to go in the ' pool ' at the hotel. It was late and we wanted to get a good night's rest before hitting the road again in the morning. My daughter loves the 'pool' and she didn't stop saying the word 'pool' until she fell asleep.
In fact she got quite upset over the fact she couldn't go swimming. We kept telling her tomorrow once we get to Popo and Gamma's house.
Then this morning as soon as she woke up she started saying 'pool' again as she remembered she saw one last night. We kept promising her she would go in one today....however it would be 6-7 hours. While she understood she would get to go in a pool today...the time in which she had to wait wasn't the best news. Throughout our drive today, she said the word 'pool' and we kept telling her as soon as we get there...as soon as we get there...as soon as we get there.
As promised after being on the road for 23 hours in two days she got to go into the pool at Popo and Gamma's house. She loves being in the pool. She truly is like a little fish in the water. She was so happy to finally be able to kick and swim around freely after the long drive. She was in a great mood to say the least. The 'pool' was incredibly refreshing after our long drive to Texas.
Now for the next few days when she says 'pool' we will be ready to jump in with her. The 'pool' is one place she can tell us where she wants to be....it is the one place she can roam freely and we are only an arms length away...it is her happy place.
I heard the word "pool" many times today. But it is one of those words I do not mind hearing over and over again as I know how much happiness pools bring to her. Next to hearing her say the word "pool" is watching her swim in one!
Here is a quote for today...
Just keep swimming- Dory from Nemo
Sunday, June 30, 2013
Saturday, June 29, 2013
"Flag"
Today's gift is "flag".
Well, we started our 1300 mile journey today to visit my dad and step mom (aka Popo and Gamma). Thankfully all three of my kids are super car travelers! And because of my daughter with Rett Syndrome driving is so much easier for us.
Needless to say we took plenty of breaks to stretch our legs. A couple of these stops were at different welcome centers along the way. As you may know the welcome centers not only have the American Flag, but also the State Flag. We saw FIVE state flags today!
My daughter loves looking at flags. The first time she said the word "flag" she was in preschool. Since then she will say the word when she sees a flag. There are times when the cat has her tongue and she will not say the word, but will stare at them. She loves watching them sway in the wind.
As soon as she saw the flags today she started pointing and saying "flag". At one of the welcome centers my son picked up a bunch of local magazines to look at in the car. Usually I don't like have extra 'stuff' in the car when we already have enough, but today I let him as they have to be entertained for 22 hours!
My daughter saw one on the floor in the car, picked it up and started flipping through it. She kept pointing out all the flags and saying "flag" to her sister.
I was so proud of her for showing us something that she likes in a magazine and in person and using the appropriate word too! While this gift may seem little or insignificant to you, it is big for us. Seeing her communicate with her sister in the backseat the best she could was beautiful to see. I love little moments like these which really make you appreciation the little things!
Here is a quote for today....in honor of our American Flag...
The land of the free, the home of the brave- Francis Scott Key
Well, we started our 1300 mile journey today to visit my dad and step mom (aka Popo and Gamma). Thankfully all three of my kids are super car travelers! And because of my daughter with Rett Syndrome driving is so much easier for us.
Needless to say we took plenty of breaks to stretch our legs. A couple of these stops were at different welcome centers along the way. As you may know the welcome centers not only have the American Flag, but also the State Flag. We saw FIVE state flags today!
My daughter loves looking at flags. The first time she said the word "flag" she was in preschool. Since then she will say the word when she sees a flag. There are times when the cat has her tongue and she will not say the word, but will stare at them. She loves watching them sway in the wind.
As soon as she saw the flags today she started pointing and saying "flag". At one of the welcome centers my son picked up a bunch of local magazines to look at in the car. Usually I don't like have extra 'stuff' in the car when we already have enough, but today I let him as they have to be entertained for 22 hours!
My daughter saw one on the floor in the car, picked it up and started flipping through it. She kept pointing out all the flags and saying "flag" to her sister.
I was so proud of her for showing us something that she likes in a magazine and in person and using the appropriate word too! While this gift may seem little or insignificant to you, it is big for us. Seeing her communicate with her sister in the backseat the best she could was beautiful to see. I love little moments like these which really make you appreciation the little things!
Here is a quote for today....in honor of our American Flag...
The land of the free, the home of the brave- Francis Scott Key
Friday, June 28, 2013
Affection
Today's gift is affection.
My daughter loves to show affection to those she loves. And she has different ways of showing affection to all of us. I know when she shows me affection it melts my heart, so I can only imagine what others think when she shows them affection.
Today I was talking to my mom and my daughter came walking into the kitchen. She wanted some attention and wanted me to notice her. So she came up to me and grabbed my arm lovingly to bring me close to her. Then she got close to my face and gave me a kiss. I loved it!
What I really love about her kisses is that she is never embarrassed to give me a kiss or a hug. It can be in front of family, friends, her peers, or strangers and she doesn't care. This is probably one of the only things I will say I enjoy about her having special needs. The fact that she still will show us affection and doesn't have to play things "cool". And it isn't me always asking her, it is her initiating it all on her own...which is even better!
Her timing is always perfect too. It is like she knows I need to slow down or that I need a kiss/hug at that moment. And for some reason her kisses and hugs do make things better.
She is one loved little girl and I think she knows how much she is truly loved by all who care for her. Her affection towards us is her way of telling us how much she appreciates what we do for her and is her way of telling us this. I will take it any day, any place, any time!
Here is a quote for today....
I love you to the moon and back, to infinity and beyond, forever and ever- Author Unknown
© copyright 2012 – All rights reserved
365 Days Gift
My daughter loves to show affection to those she loves. And she has different ways of showing affection to all of us. I know when she shows me affection it melts my heart, so I can only imagine what others think when she shows them affection.
Today I was talking to my mom and my daughter came walking into the kitchen. She wanted some attention and wanted me to notice her. So she came up to me and grabbed my arm lovingly to bring me close to her. Then she got close to my face and gave me a kiss. I loved it!
What I really love about her kisses is that she is never embarrassed to give me a kiss or a hug. It can be in front of family, friends, her peers, or strangers and she doesn't care. This is probably one of the only things I will say I enjoy about her having special needs. The fact that she still will show us affection and doesn't have to play things "cool". And it isn't me always asking her, it is her initiating it all on her own...which is even better!
Her timing is always perfect too. It is like she knows I need to slow down or that I need a kiss/hug at that moment. And for some reason her kisses and hugs do make things better.
She is one loved little girl and I think she knows how much she is truly loved by all who care for her. Her affection towards us is her way of telling us how much she appreciates what we do for her and is her way of telling us this. I will take it any day, any place, any time!
Here is a quote for today....
I love you to the moon and back, to infinity and beyond, forever and ever- Author Unknown
© copyright 2012 – All rights reserved
365 Days Gift
Thursday, June 27, 2013
Tears
Today's gift is tears.
© copyright 2012 – All rights reserved
365 Days Gift
We have two types of tears...tears of joy and tears of pain.
Tears of joy come from something wonderful making you shed tears of happiness. Tears of joy can also come from laughing so hard you actually cry!
Tears of pain come from something causing you pain...physical pain or something making you sad or upset.
My daughter rarely cries. She is one tough cookie...physically and emotionally. But when she does, I would love for all her tears to be tears of joy....but that isn't the case.
When she sheds tears, they are tears of pain. This is my big clue something is not right. Having a non-verbal child, it is extremely difficult to pin point what is wrong when she is upset. It is a guessing game where you ask yes or no questions hoping and praying for accurate answers.
Tonight was one of those times. As I was putting her to bed she was just a little off. I didn't think too much of it and just cuddled her close to me as we read. But when the whimpering and crying started I knew something was wrong. And my heart ached for her as I felt helpless. I hate seeing her upset AND not being able to tell me what is bothering her.
The tears along with her first firm answer of where it 'hurt" helped me to help her quicker. For the first time she only answered "yes" to one area...usually it is to multiple body parts leaving me to question her accuracy.
She indicated her stomach hurt...so between some medicine, a hot water bottle, cuddles and love from mom we got through the tears together.
While I don't like seeing her cry...at all, the tears were a gift to me in the fact that I knew she was in pain and had to help her as fast as I could. The tears were her sign to me...'mommy I need you'.
As I type this in bed next to her, her tears have been wiped away and she has drifted off to dreamland. She is comfortable now and I am comfortable leaving her to sleep. The only tears left are mine....tears of sadness as I can't stand to see her with any discomfort. Tears because I hate Rett Syndrome. Tears because I was proud of us working through this together.
Here is a quote for today....
A strong person is not the one who doesn't cry. A strong person is the one who cries & sheds tears for a moment, then gets up and fights again- Author Unknown
© copyright 2012 – All rights reserved
365 Days Gift
Wednesday, June 26, 2013
Making Videos
Today's gift is making videos.
Whose child loves their iTouch or iPad or if they are old enough their iPhone? Technology today has become attached to all of us. My children (ALL of them) can operate anything "i" related in our house.
My middle daughter recently downloaded a new app to her iTouch. It was an app for making videos using the camera on the device you were taping from. She showed me a couple of the videos she made and all the different effects you can have appear in the video. It was really quite neat!
Today my son picked up my phone and found this new app. Instantly, having never seen the app before he starts to watch the videos my daughter has made. Sitting next to him was his sister with Rett Syndrome. She was attached to the screen of my iPhone just like he was. She loved watching the videos.
We know my daughter loves looking at pictures, but I think today we found she loves videos of people she knows even better. So we tried it out...on us. We had my son videotape us dancing in the kitchen. I honestly do not know what she enjoyed more....dancing with me or watching the video of herself dancing.
I love how we have something new to do and something new for her to be able to request...whether it is to make a video or to watch one. I love how we have a fun way to capture her being herself, so we can look back on them in the years to come. I love how this is something she can do with her friends too! I look forward to all the videos full of memories we can make this summer.
Here is a quote for today...
If you don't do wild things while you are young, you'll have nothing to smile about when you are old- Author Unknown
**I would attach the video we made today to this post, but I can't figure it out (and the kids are asleep!). Plus since it was our first, it was a little rusty.
© copyright 2012 – All rights reserved
365 Days Gift
Whose child loves their iTouch or iPad or if they are old enough their iPhone? Technology today has become attached to all of us. My children (ALL of them) can operate anything "i" related in our house.
My middle daughter recently downloaded a new app to her iTouch. It was an app for making videos using the camera on the device you were taping from. She showed me a couple of the videos she made and all the different effects you can have appear in the video. It was really quite neat!
Today my son picked up my phone and found this new app. Instantly, having never seen the app before he starts to watch the videos my daughter has made. Sitting next to him was his sister with Rett Syndrome. She was attached to the screen of my iPhone just like he was. She loved watching the videos.
We know my daughter loves looking at pictures, but I think today we found she loves videos of people she knows even better. So we tried it out...on us. We had my son videotape us dancing in the kitchen. I honestly do not know what she enjoyed more....dancing with me or watching the video of herself dancing.
I love how we have something new to do and something new for her to be able to request...whether it is to make a video or to watch one. I love how we have a fun way to capture her being herself, so we can look back on them in the years to come. I love how this is something she can do with her friends too! I look forward to all the videos full of memories we can make this summer.
Here is a quote for today...
If you don't do wild things while you are young, you'll have nothing to smile about when you are old- Author Unknown
**I would attach the video we made today to this post, but I can't figure it out (and the kids are asleep!). Plus since it was our first, it was a little rusty.
© copyright 2012 – All rights reserved
365 Days Gift
Tuesday, June 25, 2013
"Mar"
Today's gift is "Mar".
You probably know by now, when I put something in quotations it means my daughter has said a new word...or an approximation of a word.
She did it again.
We were sitting on the sofa watching tv and waiting for dinner to be ready. I was talking to my son and my daughter and she was also playing on her iPad. After a while it got kinda quiet...except for one thing. My daughter kept tapping something on her iPad and saying "Mar".
It took me a couple of minutes to tune in and realize she was telling me something....yes sometimes I am a little slow on the uptake! When I looked at her iPad and watched what she was doing while she was saying "Mar", I couldn't believe my eyes...and ears!!!
She was tapping a picture of a boy in her class and saying his name (Mark) over and over and over again!!!
First, I have never heard her say his name before...ever. Second, she was so adamant about showing me his picture AND she had a huge smile on her face. Third, I love it when her new words are her friend's name. I was so proud of her for gaining another word AND saying it as she was showing me his picture.
What is equally as precious is also the fact that this little boy in her class also has special needs...autism. In the picture that she was showing me, it was a picture of the two of them surrounded by their typical peers at field day. This picture has always made me smile, but now when I look at it, it brings a differently level of happiness to my heart!
Here is a quote for today....
Remember you don't need a certain number of friends, just a number of friends you can be certain of- Author Unknown
© copyright 2012 – All rights reserved
365 Days Gift
You probably know by now, when I put something in quotations it means my daughter has said a new word...or an approximation of a word.
She did it again.
We were sitting on the sofa watching tv and waiting for dinner to be ready. I was talking to my son and my daughter and she was also playing on her iPad. After a while it got kinda quiet...except for one thing. My daughter kept tapping something on her iPad and saying "Mar".
It took me a couple of minutes to tune in and realize she was telling me something....yes sometimes I am a little slow on the uptake! When I looked at her iPad and watched what she was doing while she was saying "Mar", I couldn't believe my eyes...and ears!!!
She was tapping a picture of a boy in her class and saying his name (Mark) over and over and over again!!!
First, I have never heard her say his name before...ever. Second, she was so adamant about showing me his picture AND she had a huge smile on her face. Third, I love it when her new words are her friend's name. I was so proud of her for gaining another word AND saying it as she was showing me his picture.
What is equally as precious is also the fact that this little boy in her class also has special needs...autism. In the picture that she was showing me, it was a picture of the two of them surrounded by their typical peers at field day. This picture has always made me smile, but now when I look at it, it brings a differently level of happiness to my heart!
My daughter is in the middle and "Mar" is in yellow.
Here is a quote for today....
Remember you don't need a certain number of friends, just a number of friends you can be certain of- Author Unknown
© copyright 2012 – All rights reserved
365 Days Gift
Monday, June 24, 2013
Snow Angel
Today's gift is snow angel.
Kinda crazy I titled today's gift snow angel seeing as it was 90 degrees here today with no snow!
Last night my middle daughter wanted someone to sleep with her. After a weekend of Mimi and Poppy time (aka musical bed weekend), the kids felt they still needed someone to sleep with them....for company. Needless to say, all I wanted was a good night sleep in my own bed.
Both her sister and brother were asleep too.
But then around 10:00 when I was going to bed, I noticed my oldest daughter was starting to stir. I didn't know if this was some "plan" my middle daughter had or if it was just coincidence. Lucky for her it was just by chance.
Instead of me lying down with my daughter until she fell back to sleep and me of course falling asleep too, I decided to take the chance and let her sleep in her sister's room. Taking a chance that she would get out of bed and I would after all have to lie with her until she was back to dreamland again.
I tucked both girls in, gave them a kiss and said goodnight. I immediately went to my room and turned on the tv (we have camera's in the kids rooms) and watched them. No movement = great sign.
Let's just say it was a great night sleep as I don't even remember hitting my pillow. I vaguely remembered that the girls were sleeping together. So when I turned on the tv this morning to check on my oldest daughter (still thinking she was in her room), I had my gift already on the screen.
It was both of my girls sleeping peacefully in bed. Together. Just like sisters do.
I love moments like these. This was the first time my oldest daughter has ever gone to bed on her own in her sister's room. HUGE milestone!
When I asked my middle daughter how it went last night, she said she didn't sleep that well because her sister was a snow angel all night, and she stretched her arms and legs out as if she was doing a snow angel. But she didn't care that her sister took over her bed....all that mattered to her was that she was able to have a sleepover in her room with her big sister.
A snow angel is the perfect way to describe how my daughter sleeps. I had never thought of it before until my middle daughter mentioned it today...but she is exactly right. I guess no matter how you look at it, my daughter is an angel in many different ways.
Here is a quote for today....
Because I have a sister, I will always have a friend- Author Unknown
© copyright 2012 – All rights reserved
365 Days Gift
Kinda crazy I titled today's gift snow angel seeing as it was 90 degrees here today with no snow!
Last night my middle daughter wanted someone to sleep with her. After a weekend of Mimi and Poppy time (aka musical bed weekend), the kids felt they still needed someone to sleep with them....for company. Needless to say, all I wanted was a good night sleep in my own bed.
Both her sister and brother were asleep too.
But then around 10:00 when I was going to bed, I noticed my oldest daughter was starting to stir. I didn't know if this was some "plan" my middle daughter had or if it was just coincidence. Lucky for her it was just by chance.
Instead of me lying down with my daughter until she fell back to sleep and me of course falling asleep too, I decided to take the chance and let her sleep in her sister's room. Taking a chance that she would get out of bed and I would after all have to lie with her until she was back to dreamland again.
I tucked both girls in, gave them a kiss and said goodnight. I immediately went to my room and turned on the tv (we have camera's in the kids rooms) and watched them. No movement = great sign.
Let's just say it was a great night sleep as I don't even remember hitting my pillow. I vaguely remembered that the girls were sleeping together. So when I turned on the tv this morning to check on my oldest daughter (still thinking she was in her room), I had my gift already on the screen.
It was both of my girls sleeping peacefully in bed. Together. Just like sisters do.
I love moments like these. This was the first time my oldest daughter has ever gone to bed on her own in her sister's room. HUGE milestone!
When I asked my middle daughter how it went last night, she said she didn't sleep that well because her sister was a snow angel all night, and she stretched her arms and legs out as if she was doing a snow angel. But she didn't care that her sister took over her bed....all that mattered to her was that she was able to have a sleepover in her room with her big sister.
A snow angel is the perfect way to describe how my daughter sleeps. I had never thought of it before until my middle daughter mentioned it today...but she is exactly right. I guess no matter how you look at it, my daughter is an angel in many different ways.
Here is a quote for today....
Because I have a sister, I will always have a friend- Author Unknown
© copyright 2012 – All rights reserved
365 Days Gift
Sunday, June 23, 2013
A Warm Welcome Home
Today's gift is a warm welcome home.
After an eventful weekend it was nice to come home to our three children. It was especially nice to walk in and see our daughter smiling and to hear "Daddy" and "Mommy" right away!
We relaxed together on the sofa and talked about her weekend with Mimi and Poppy. The whole time she was saying "mommy" in her most sincere, 'I love you' voice. The one that tells me she missed me. The one that melts my heart.
An extra treat was how she wanted to cuddle with us and sit in her favorite chair on the porch. After three days of wedding festivities and talking to new and old friends we were tired! We were happy she wanted to "relax" too. I will also give my husband two thumbs up for taking the kids for a walk so I could have a little shut eye! Thank you honey!!
It is a wonderful feeling to know your children are being cared for and having a great time while you are away (thank you Mimi and Poppy!!!). But it is even a better feeling when you come home and you know they missed you. My other two children can tell me about every last detail of their weekend. My daughter can not. But when I hear in her voice how she says my name, I know she missed me and I know she is happy we are back home.
Here is a quote for today....
Wherever we are together that is home- Author Unknown
© copyright 2012 – All rights reserved
365 Days Gift
After an eventful weekend it was nice to come home to our three children. It was especially nice to walk in and see our daughter smiling and to hear "Daddy" and "Mommy" right away!
We relaxed together on the sofa and talked about her weekend with Mimi and Poppy. The whole time she was saying "mommy" in her most sincere, 'I love you' voice. The one that tells me she missed me. The one that melts my heart.
An extra treat was how she wanted to cuddle with us and sit in her favorite chair on the porch. After three days of wedding festivities and talking to new and old friends we were tired! We were happy she wanted to "relax" too. I will also give my husband two thumbs up for taking the kids for a walk so I could have a little shut eye! Thank you honey!!
It is a wonderful feeling to know your children are being cared for and having a great time while you are away (thank you Mimi and Poppy!!!). But it is even a better feeling when you come home and you know they missed you. My other two children can tell me about every last detail of their weekend. My daughter can not. But when I hear in her voice how she says my name, I know she missed me and I know she is happy we are back home.
Here is a quote for today....
Wherever we are together that is home- Author Unknown
© copyright 2012 – All rights reserved
365 Days Gift
Saturday, June 22, 2013
Take it One Day at a Time
Today's gift is take it one day at a time.
I don't know if you read my post titled, The Real Teacher, but if you haven't please do. http://www.365daysgift.com/2013/06/the-real-teacher.html
My husband, wrote for a Rett blog and one of his thoughts he shared was how hard it is for him to watch a father give away his daughter at a wedding and how hard it is for him to watch the father/daughter dance. I will not lie. It is hard for me too.
My friend is getting married today and I am in the wedding. There have been many thoughts all weekend leading up to today. And you may see my thoughts in some way are similar to yesterdays...as weddings do make me think into the future. I apologize for sounding redundant, but I would not be true to myself if they didn't come out again. Thoughts of course, about will this type of day ever be a reality for my daughter. The answer is simple.
I do not know.
I would like to think, yes, it will happen. But I simply do not know.
It is amazing to think that the researchers and scientists found that mutations in a gene called MECP2 were identified as to what causes Rett Syndrome in 1999. Then eight years later in 2007, they reversed Rett Syndrome in mice. So hopefully this means that in 2015, eight years after the reversal they will have bigger and better news for the families who have a loved one with Rett Syndrome. My daughter will be 14 in 2015.
My dream would be for a cure or treatment to be available by her 16th birthday. How incredible would that be?!?! It isn't too unrealistic to think this. Research has come so far and many scientists are so close to unlocking our girls from their own bodies.
I dream of the day when she is free of Rett. Where she can do all the things she has always wanted to do....but couldn't . Where she can travel the world...without me. Where she can walk hand in hand... with someone she loves. Where she can dance... all night long. Where she can live the life she deserves... with someone who will love her with all their heart.
Until this day comes, my daughter has taught me to just take it one day at a time. There is no sense in worrying about something that is going or not going to happen. There is no sense in thinking of all the "what ifs". There is no sense in letting everything in the present slip away because I am thinking about the future. Enjoy today for today. Live in the moment. What happens in the future is going to happen regardless of my thoughts or worrying.
She is so amazing today the way she is and I do not want to take that for granted! Together we will take it one day at a time and together we will see what the future holds for us.
Here are two quotes for today...
Note to self: don't worry, if it's supposed to happen, it will- Author Unknown
Worrying is like sitting in a rocking chair. It gives you something to do, but doesn't get you anywhere - English Proverb
© copyright 2012 – All rights reserved
365 Days Gift
I don't know if you read my post titled, The Real Teacher, but if you haven't please do. http://www.365daysgift.com/2013/06/the-real-teacher.html
My husband, wrote for a Rett blog and one of his thoughts he shared was how hard it is for him to watch a father give away his daughter at a wedding and how hard it is for him to watch the father/daughter dance. I will not lie. It is hard for me too.
My friend is getting married today and I am in the wedding. There have been many thoughts all weekend leading up to today. And you may see my thoughts in some way are similar to yesterdays...as weddings do make me think into the future. I apologize for sounding redundant, but I would not be true to myself if they didn't come out again. Thoughts of course, about will this type of day ever be a reality for my daughter. The answer is simple.
I do not know.
I would like to think, yes, it will happen. But I simply do not know.
It is amazing to think that the researchers and scientists found that mutations in a gene called MECP2 were identified as to what causes Rett Syndrome in 1999. Then eight years later in 2007, they reversed Rett Syndrome in mice. So hopefully this means that in 2015, eight years after the reversal they will have bigger and better news for the families who have a loved one with Rett Syndrome. My daughter will be 14 in 2015.
My dream would be for a cure or treatment to be available by her 16th birthday. How incredible would that be?!?! It isn't too unrealistic to think this. Research has come so far and many scientists are so close to unlocking our girls from their own bodies.
I dream of the day when she is free of Rett. Where she can do all the things she has always wanted to do....but couldn't . Where she can travel the world...without me. Where she can walk hand in hand... with someone she loves. Where she can dance... all night long. Where she can live the life she deserves... with someone who will love her with all their heart.
Until this day comes, my daughter has taught me to just take it one day at a time. There is no sense in worrying about something that is going or not going to happen. There is no sense in thinking of all the "what ifs". There is no sense in letting everything in the present slip away because I am thinking about the future. Enjoy today for today. Live in the moment. What happens in the future is going to happen regardless of my thoughts or worrying.
She is so amazing today the way she is and I do not want to take that for granted! Together we will take it one day at a time and together we will see what the future holds for us.
Here are two quotes for today...
Note to self: don't worry, if it's supposed to happen, it will- Author Unknown
Worrying is like sitting in a rocking chair. It gives you something to do, but doesn't get you anywhere - English Proverb
© copyright 2012 – All rights reserved
365 Days Gift
Friday, June 21, 2013
The Little Things #10
Today's gift is the little things #10.
Do not dwell in the past, do not dream of the future, concentrate the mind on the present moment- Buddha
© copyright 2012 – All rights reserved
365 Days Gift
So many times we get wrapped up in the comings and goings of every day life that we often miss things or we see them but nothing looks different.
Until you take a step back.
I'm out of town for one of my best friend's wedding and I am talking with my children via FaceTime. First, let's just say how awesome is technology today that we can see our kids when away...seeing them AND hearing their voice...double bonus! Second, I love watching them. I love looking at them when I take a step back.
It happened before my eyes. My daughter is maturing. I KNEW this, but seeing her from afar has really hit me. My baby is becoming a young lady. Her beautiful chubby cheeks have turned into a beautiful face of a soon to be teenager. She is taller....up to my chin! Her hands are getting bigger.
However, with all the changes her eyes are still bright and full of life. Her smile is still contagious. Her hands still fit into mine. Her voice still melts my heart.
I pray every night that one day...and hopefully one day soon, she will be cured from the Rett Monster and we can share many conversations doing whatever she wants to! Whether it is next year, in five years, or ten years....I will wait for the chance to share a "typical" mother/daughter conversation.
Until that day I will continue to look at her beautiful face, deep into her bright green eyes and smile. Smile because she is mine. Smile because I love her. Smile because that is our language.
Here is a quote for today....
Do not dwell in the past, do not dream of the future, concentrate the mind on the present moment- Buddha
© copyright 2012 – All rights reserved
365 Days Gift
Thursday, June 20, 2013
Rocking Therapy
Today's gift is rocking therapy.
I couldn't be prouder of my daughter and how hard she works at physical therapy. It truly is so inspiring to see.
I know I post often about her days at physical therapy, but it is such an important part of her life...I have to post often. PT helps make her who she is. PT pushes her to be better. PT is her form of exercise. PT is that one mountain she climbs twice a week and while the climb is difficult, the outcome is amazing.
If she didn't have the cheerleaders by her side that she does at PT, I can honestly tell you the energy you would get from my daughter would be less...significantly less. Her therapists have so much energy and spunk and are cheering her on to reach or kick or step or whatever it is they are working on...one more time. Their energy levels never drop during a session. They keep her pumped!
If you think about it, it is just like us being in an exercise class. If the instructor has no motivation or spunk your output in the class will be less, than if you have the bubbly and high energized instructor. The same is for my daughter at physical therapy. You get from her what you put in!
Slowly they are adding new and challenging stretches and exercises. While it isn't easy or the most comfortable, she does them with grace. She does them while laughing. She does them because in the end she knows it will help her and make her feel better.
You know what they say...no pain, no gain.
Here are two quotes for today....
I've learned...life is tough, but I'm tougher- Author Unknown
When everything feels like an uphill struggle; just think of the view from the top- Author Unknown
I couldn't be prouder of my daughter and how hard she works at physical therapy. It truly is so inspiring to see.
I know I post often about her days at physical therapy, but it is such an important part of her life...I have to post often. PT helps make her who she is. PT pushes her to be better. PT is her form of exercise. PT is that one mountain she climbs twice a week and while the climb is difficult, the outcome is amazing.
If she didn't have the cheerleaders by her side that she does at PT, I can honestly tell you the energy you would get from my daughter would be less...significantly less. Her therapists have so much energy and spunk and are cheering her on to reach or kick or step or whatever it is they are working on...one more time. Their energy levels never drop during a session. They keep her pumped!
If you think about it, it is just like us being in an exercise class. If the instructor has no motivation or spunk your output in the class will be less, than if you have the bubbly and high energized instructor. The same is for my daughter at physical therapy. You get from her what you put in!
Slowly they are adding new and challenging stretches and exercises. While it isn't easy or the most comfortable, she does them with grace. She does them while laughing. She does them because in the end she knows it will help her and make her feel better.
You know what they say...no pain, no gain.
**These pictures were from another day, but they still give you an idea of what she does**
Here are two quotes for today....
I've learned...life is tough, but I'm tougher- Author Unknown
When everything feels like an uphill struggle; just think of the view from the top- Author Unknown
Wednesday, June 19, 2013
Wittiness
Today's gift is her wittiness.
I know I have mentioned my daughter's laugh is contagious....right? It really is. Especially her belly laugh. But what is equally as contagious is her grin followed by a little chuckle.
This type of chuckle is one where she is probably laughing at you. Something you did and didn't know it or something you said and she totally got the joke.
After lunch her "Anne Sullivan" was playing a game of Hedbandz with my daughter, her siblings and her Granny. My daughter didn't want to play as she was a little sleepy, so she watched them look silly. You really do! In this game everyone is wearing a little "head band" and then someone puts a card on the front of you head band where you can not see it. You are only allowed to ask questions about your card and you try to guess the picture on it. Everyone has a minute until the next person's turn.
My daughter enjoys playing this game and it is great for getting her to use her iPODD (though today would have been the first time playing since the iPODD and in the past has done great with her iPad). She does a great job of telling you yes or no to the questions you ask her.
Fast forward about an hour or so. "Anne Sullivan", my daughter and I are sitting on the back porch talking. I am facing the two of them as they are sitting across from me. The whole time "Anne Sullivan" is talking my daughter is looking at her with this smirk on her face. I know why, but "Anne Sullivan" hasn't picked up on it yet.
We just keep talking and talking. And then my daughter looks at "Anne Sullivan" points to her head and chuckles. "Anne Sullivan" then realizes that she still has on the head band from the game! The game which they had stopped playing at least 20 minutes earlier! It was my daughter's way of saying, "hey silly, you still have that thing on your head!"
It was truly a funny moment. Maybe you had to be there to really appreciate my daughter's wittiness. The best thing about this moment too was how natural it was and how she knew she was being funny.
Moments like these are the best as they can not be taught. They just happen.
Here is a quote for today....
From there to here, from here to there, funny things are everywhere- Dr. Seuss
© copyright 2012 – All rights reserved
365 Days Gift
I know I have mentioned my daughter's laugh is contagious....right? It really is. Especially her belly laugh. But what is equally as contagious is her grin followed by a little chuckle.
This type of chuckle is one where she is probably laughing at you. Something you did and didn't know it or something you said and she totally got the joke.
After lunch her "Anne Sullivan" was playing a game of Hedbandz with my daughter, her siblings and her Granny. My daughter didn't want to play as she was a little sleepy, so she watched them look silly. You really do! In this game everyone is wearing a little "head band" and then someone puts a card on the front of you head band where you can not see it. You are only allowed to ask questions about your card and you try to guess the picture on it. Everyone has a minute until the next person's turn.
My daughter enjoys playing this game and it is great for getting her to use her iPODD (though today would have been the first time playing since the iPODD and in the past has done great with her iPad). She does a great job of telling you yes or no to the questions you ask her.
Fast forward about an hour or so. "Anne Sullivan", my daughter and I are sitting on the back porch talking. I am facing the two of them as they are sitting across from me. The whole time "Anne Sullivan" is talking my daughter is looking at her with this smirk on her face. I know why, but "Anne Sullivan" hasn't picked up on it yet.
We just keep talking and talking. And then my daughter looks at "Anne Sullivan" points to her head and chuckles. "Anne Sullivan" then realizes that she still has on the head band from the game! The game which they had stopped playing at least 20 minutes earlier! It was my daughter's way of saying, "hey silly, you still have that thing on your head!"
It was truly a funny moment. Maybe you had to be there to really appreciate my daughter's wittiness. The best thing about this moment too was how natural it was and how she knew she was being funny.
Moments like these are the best as they can not be taught. They just happen.
I didn't take a picture today, but this was them playing the game at the beach last summer!
Here is a quote for today....
From there to here, from here to there, funny things are everywhere- Dr. Seuss
© copyright 2012 – All rights reserved
365 Days Gift
Tuesday, June 18, 2013
A Great Birthday
Today's gift is a great birthday.
Just like I can't believe my children are getting older and older, I equally can not believe I am too! I celebrated the 8th anniversary of my 29th birthday today. And it was a great day.
Birthday's change as you get older. Of course you still love that it is "your day", but the excitement is a little different. On my birthday I just want the day to go well....as in I want the Rett Monster to not come out.
All in all, it was a great day. My daughter was unhappy for a brief period after breakfast, but the rest of the day she was fantastic...so I almost forget about this morning. She sang Happy Birthday to me a PT this morning, we enjoyed lunch together, and she even let me take a little siesta on her lap this afternoon. How lucky was I that she let me sneak that in there?!?!?!
She woke me up with the sweetest voice saying, "mommy". Hearing her say my name is one of the most incredible things I think she says. Of course, every other person whose name she can say thinks the same.
After dinner I was lucky enough to be sung too again by my whole family. I always love listening to my children sing and how everyone stops at the same time to let my daughter with Rett Syndrome enter the name of the person who's birthday it is. Her smile on her face says it all! As does mine.
Her card she picked at the store ALL BY HERSELF was perfect. The message could not have been better. I love how you can always find a perfect card when you are looking for one.
I ended my evening by putting her to bed. I love cuddling and reading to her. I love this time we spend together. I love looking at her while she drifts off to sleep. It was the perfect way for me to end my birthday.
I couldn't have asked for the day to have been any better. I spent the day with many of my family members and those who do not live close I heard their love over the phone. It was a calm and quiet day....just what I wanted!
Here are two quotes for today....
A birthday is the first day of another 365 day journey around the sun. Enjoy the sun.- Author Unknown
Why is a birthday cake the only food you can blow on and spit on and everybody rushes to get a piece- Author Unknown
© copyright 2012 – All rights reserved
365 Days Gift
Just like I can't believe my children are getting older and older, I equally can not believe I am too! I celebrated the 8th anniversary of my 29th birthday today. And it was a great day.
Birthday's change as you get older. Of course you still love that it is "your day", but the excitement is a little different. On my birthday I just want the day to go well....as in I want the Rett Monster to not come out.
All in all, it was a great day. My daughter was unhappy for a brief period after breakfast, but the rest of the day she was fantastic...so I almost forget about this morning. She sang Happy Birthday to me a PT this morning, we enjoyed lunch together, and she even let me take a little siesta on her lap this afternoon. How lucky was I that she let me sneak that in there?!?!?!
She woke me up with the sweetest voice saying, "mommy". Hearing her say my name is one of the most incredible things I think she says. Of course, every other person whose name she can say thinks the same.
After dinner I was lucky enough to be sung too again by my whole family. I always love listening to my children sing and how everyone stops at the same time to let my daughter with Rett Syndrome enter the name of the person who's birthday it is. Her smile on her face says it all! As does mine.
Her card she picked at the store ALL BY HERSELF was perfect. The message could not have been better. I love how you can always find a perfect card when you are looking for one.
I ended my evening by putting her to bed. I love cuddling and reading to her. I love this time we spend together. I love looking at her while she drifts off to sleep. It was the perfect way for me to end my birthday.
I couldn't have asked for the day to have been any better. I spent the day with many of my family members and those who do not live close I heard their love over the phone. It was a calm and quiet day....just what I wanted!
Here are two quotes for today....
A birthday is the first day of another 365 day journey around the sun. Enjoy the sun.- Author Unknown
Why is a birthday cake the only food you can blow on and spit on and everybody rushes to get a piece- Author Unknown
© copyright 2012 – All rights reserved
365 Days Gift
Monday, June 17, 2013
Porch Time with Granny
Today's gift is porch time with Granny.
There is nothing like sitting on the screened in porch on a nice day. My daughter loves being outside, so when we added our porch three years ago, we knew it was going to be one of her favorite places....and we were right.
She loves the fresh air (even when it is 90 out!). She loves listening to nature. She loves feeling the cool breeze when you are sitting still enough to actually feel it on a warm day. She loves the super comfortable chairs we have on the porch and sometimes will fall asleep in them...who can blame her!
She just loves being outside.
There is someone else who will sit outside with her for hours too and share the moment with her. Her Granny.
Her Granny also spoils her and will rub her legs while they are sitting outside. But she deserves it!
I love listening to their conversations out on the porch. They talk about their day, what they hear, who they see and everything in between. Sometimes they even play a game of Connect 4! It is a great bonding time the two of them share.
And while they are bonding, I am able to get some things around the house done or get dinner started. It is a win win for all of us.
All of my children are very blessed that they have FIVE "GRANDS" and TWO "GREAT-GRANDS" who are a part of their lives. I always want them to know how important family is and how lucky they are to have this time with their grandparents and great-grandparents. Seeing my children spend time with their grandparents and great-grandmothers is a wonderful thing to see, but it is extra special watching the bond between my daughter with special needs and her grandparents and great-grandmothers. I can not wait for the day when she can tell me all the wonderful memories she remembers from spending time with them!
Here is a quote for today....
The best portion of your life will be the small, nameless moments you spend smiling with someone who matters to you- Author Unknown
© copyright 2012 – All rights reserved
365 Days Gift
There is nothing like sitting on the screened in porch on a nice day. My daughter loves being outside, so when we added our porch three years ago, we knew it was going to be one of her favorite places....and we were right.
She loves the fresh air (even when it is 90 out!). She loves listening to nature. She loves feeling the cool breeze when you are sitting still enough to actually feel it on a warm day. She loves the super comfortable chairs we have on the porch and sometimes will fall asleep in them...who can blame her!
She just loves being outside.
There is someone else who will sit outside with her for hours too and share the moment with her. Her Granny.
Her Granny also spoils her and will rub her legs while they are sitting outside. But she deserves it!
I love listening to their conversations out on the porch. They talk about their day, what they hear, who they see and everything in between. Sometimes they even play a game of Connect 4! It is a great bonding time the two of them share.
And while they are bonding, I am able to get some things around the house done or get dinner started. It is a win win for all of us.
All of my children are very blessed that they have FIVE "GRANDS" and TWO "GREAT-GRANDS" who are a part of their lives. I always want them to know how important family is and how lucky they are to have this time with their grandparents and great-grandparents. Seeing my children spend time with their grandparents and great-grandmothers is a wonderful thing to see, but it is extra special watching the bond between my daughter with special needs and her grandparents and great-grandmothers. I can not wait for the day when she can tell me all the wonderful memories she remembers from spending time with them!
Here is a quote for today....
The best portion of your life will be the small, nameless moments you spend smiling with someone who matters to you- Author Unknown
© copyright 2012 – All rights reserved
365 Days Gift
Sunday, June 16, 2013
A Great Father's Day
Today's gift is a great Father's Day.
We had a great day today!
With my daughter you honestly never know what kind of day you are going to have. We always pray for good ones, but sometimes the Rett Monster takes over.
My daughter was the only one who slept in this morning....I was very jealous! The kids made breakfast for their dad and Poppy. After breakfast we all relaxed and then Mimi and Poppy left to go back home as we had plans in the afternoon.
My husband wanted to go to a baseball game. We have a local farm team and the games are really fun. We celebrated Father's Day two years ago doing the same thing. And it was a huge success. So we were praying it would be another success today.
And it was!
I am so proud of my daughter and how far she has come sensory wise with noises...loud noises in particular. From the moment we walked in everything was loud. A band greeted us right at the top of the stairs. Then once you sit down there is more loud music with lots of people talking and yelling.
There is also a lot to see and I think this helps....a ton! She loves to look around and people watch.
She was incredible! After we left (we left towards the end of the 9th inning as we wanted to beat the crowd out) we praised all of our children for being very well behaved....but especially my oldest. She basically made it through the entire game (she would have if we didn't leave early) AND we were there 30 minutes before the game started!
Today was also special because we enjoyed the game with another family who have a daughter a year younger than my middle daughter who has Autism. Seeing both of our daughters together and enjoying the game just like any other 11 or 7 year old was beautiful to see.
I know my husband had a great Father's Day and that he was so excited we had another successful time at the baseball game as a family. I was equally as happy and thrilled it was a perfect day for him!
Here is a quote for today....a special one for the bond between my daughter and her father....
My father gave me the greatest gift anyone could give to another person, he believed in me- Jim Valvano
© copyright 2012 – All rights reserved
365 Days Gift
We had a great day today!
With my daughter you honestly never know what kind of day you are going to have. We always pray for good ones, but sometimes the Rett Monster takes over.
My daughter was the only one who slept in this morning....I was very jealous! The kids made breakfast for their dad and Poppy. After breakfast we all relaxed and then Mimi and Poppy left to go back home as we had plans in the afternoon.
My husband wanted to go to a baseball game. We have a local farm team and the games are really fun. We celebrated Father's Day two years ago doing the same thing. And it was a huge success. So we were praying it would be another success today.
And it was!
I am so proud of my daughter and how far she has come sensory wise with noises...loud noises in particular. From the moment we walked in everything was loud. A band greeted us right at the top of the stairs. Then once you sit down there is more loud music with lots of people talking and yelling.
There is also a lot to see and I think this helps....a ton! She loves to look around and people watch.
She was incredible! After we left (we left towards the end of the 9th inning as we wanted to beat the crowd out) we praised all of our children for being very well behaved....but especially my oldest. She basically made it through the entire game (she would have if we didn't leave early) AND we were there 30 minutes before the game started!
Today was also special because we enjoyed the game with another family who have a daughter a year younger than my middle daughter who has Autism. Seeing both of our daughters together and enjoying the game just like any other 11 or 7 year old was beautiful to see.
I know my husband had a great Father's Day and that he was so excited we had another successful time at the baseball game as a family. I was equally as happy and thrilled it was a perfect day for him!
She really was all smiles at the game! This was a bad picture to truly tell the story!
The giant Nutzy!
Benefit of leaving the game early....golf cart ride to the car!
Here is a quote for today....a special one for the bond between my daughter and her father....
My father gave me the greatest gift anyone could give to another person, he believed in me- Jim Valvano
© copyright 2012 – All rights reserved
365 Days Gift
Saturday, June 15, 2013
The 'Real' Teacher
Today's gift is being the 'real' teacher.
I just thought it was fitting to title today's post the real teacher. After all school ended yesterday and my blog is about the gifts my daughter gives to me....daily.
I am not the only one who she gives gifts too. But not everyone can express or feels comfortable releasing their true emotions on loving someone with special needs. It is hard. I kept my true feelings bottled up for a real long time. You don't want everyone to know. You want to make it seem all rosy for everyone else, when in reality it is not.
Then one day I realized holding all my feelings inside was making me feel worse rather than better. I realized I didn't want to paint this "rosy" picture. I wanted my friends and family to realize there are ups and downs and sometimes the downs are way down. I wanted them to know our true story...with the good and the different. This is us. This is our family.
I didn't want to tell the story for sympathy, but so they can understand.
Today my gift is seeing how my daughter has been the 'real' teacher to my husband. How she has gotten him to open up about his feelings. I know them. But many do not.
He was asked to write a post for a blog, called Rett Girl. It is beautiful. It is honest. It will bring you to tears.
I hope you enjoy it and can see a different side of our Rett World...a side from the my daughter's father...her true prince (and mine too!).
Enjoy....
We have all heard the saying about “finding the silver lining” in a bad situation; to all of the families that struggle with girls and women fighting Rett syndrome, this must become one of our Family Values. There are countless ways that Rett syndrome has made me a better person and more importantly a better husband and father, but one of the most important is that my daughter’s diagnosis forced me to develop my own unique set of Family Values. Here are a few of the new or altered Family Values that I have learned.
When your oldest child is impacted by something like Rett, you don’t have “normal” development to compare against, so you just learn to take everything in stride. This is not an easy change to accept, but it is a change that must be accepted. Our family celebrates the amazing things that my daughter with Rett syndrome does, and we have learned to celebrate the everyday things that our other two kids do. Were it not for Rett, we would never appreciate the importance of thanking God for all things, big and small, that each of our children do everyday.
Perspective is another great lesson that I have learned from my daughter. My little girl has Rett syndrome, but I am blessed that she has a mild form of this devastating monster. There is absolutely nothing that I will face which comes close to the battles that my daughter wins against Rett syndrome everyday. “Bad day at the office?” Really? How about finally succeeding to grasp a cup after thousands of failed repetitions of having to force your own hands to, first, separate from their constant clasp, then hold a cup so that you can drink on your own.
I would be lying if I failed to describe a bad Family Value that accompanies having a daughter with Rett syndrome, grief. For the months that my wife and I waited to get the genetic results back, which confirmed what our daughter had, I stayed up nightly researching Rett syndrome, just hoping that I would find something that would prove that my little girl did not have this. Unfortunately, by the time, I took the fateful call from the geneticist confirming my daughter’s diagnosis, I knew that she had Rett syndrome. My tears had been shed over the prior months as I sat up at night searching for some different answer, so I was somewhat prepared when I finally heard those words, “The genetic tests confirm that your daughter has Rett syndrome.” But, after that initial moment of loss, the feelings of grief still arise when something makes me wonder “What if?” For a couple of years after our diagnosis, I could not handle watching a father give away his daughter at a wedding or share the first dance at the reception, because it made me ache to share those moments with my own princess one day. Now, the grief is triggered when I see other girls do something that I wish my own daughter could experience, usually something little, like taking off on a bike to a friend’s house.
Finally, Rett has taught me and my family to Hope. I hope that one day, my precious, little girl will tell me she loves me, give me a hug and walk away to live her own life. Amazing how visualizing one’s daughter being able to do those things would be such a miraculous dream come true. Hope must be constant and unfaltering. Our family shares a hope for our daughter to continue to grow and learn new skills, and a hope that a cure will be found before the Rett monster breaks our little girl’s body apart.
Instead of a quote for today....I will just leave you with these two pictures of the two of them....as a picture is worth a thousand words..
© copyright 2012 – All rights reserved
365 Days Gift
I just thought it was fitting to title today's post the real teacher. After all school ended yesterday and my blog is about the gifts my daughter gives to me....daily.
I am not the only one who she gives gifts too. But not everyone can express or feels comfortable releasing their true emotions on loving someone with special needs. It is hard. I kept my true feelings bottled up for a real long time. You don't want everyone to know. You want to make it seem all rosy for everyone else, when in reality it is not.
Then one day I realized holding all my feelings inside was making me feel worse rather than better. I realized I didn't want to paint this "rosy" picture. I wanted my friends and family to realize there are ups and downs and sometimes the downs are way down. I wanted them to know our true story...with the good and the different. This is us. This is our family.
I didn't want to tell the story for sympathy, but so they can understand.
Today my gift is seeing how my daughter has been the 'real' teacher to my husband. How she has gotten him to open up about his feelings. I know them. But many do not.
He was asked to write a post for a blog, called Rett Girl. It is beautiful. It is honest. It will bring you to tears.
I hope you enjoy it and can see a different side of our Rett World...a side from the my daughter's father...her true prince (and mine too!).
Enjoy....
We have all heard the saying about “finding the silver lining” in a bad situation; to all of the families that struggle with girls and women fighting Rett syndrome, this must become one of our Family Values. There are countless ways that Rett syndrome has made me a better person and more importantly a better husband and father, but one of the most important is that my daughter’s diagnosis forced me to develop my own unique set of Family Values. Here are a few of the new or altered Family Values that I have learned.
Taking it in stride
When your oldest child is impacted by something like Rett, you don’t have “normal” development to compare against, so you just learn to take everything in stride. This is not an easy change to accept, but it is a change that must be accepted. Our family celebrates the amazing things that my daughter with Rett syndrome does, and we have learned to celebrate the everyday things that our other two kids do. Were it not for Rett, we would never appreciate the importance of thanking God for all things, big and small, that each of our children do everyday.
Perspective
Perspective is another great lesson that I have learned from my daughter. My little girl has Rett syndrome, but I am blessed that she has a mild form of this devastating monster. There is absolutely nothing that I will face which comes close to the battles that my daughter wins against Rett syndrome everyday. “Bad day at the office?” Really? How about finally succeeding to grasp a cup after thousands of failed repetitions of having to force your own hands to, first, separate from their constant clasp, then hold a cup so that you can drink on your own.
Grief
I would be lying if I failed to describe a bad Family Value that accompanies having a daughter with Rett syndrome, grief. For the months that my wife and I waited to get the genetic results back, which confirmed what our daughter had, I stayed up nightly researching Rett syndrome, just hoping that I would find something that would prove that my little girl did not have this. Unfortunately, by the time, I took the fateful call from the geneticist confirming my daughter’s diagnosis, I knew that she had Rett syndrome. My tears had been shed over the prior months as I sat up at night searching for some different answer, so I was somewhat prepared when I finally heard those words, “The genetic tests confirm that your daughter has Rett syndrome.” But, after that initial moment of loss, the feelings of grief still arise when something makes me wonder “What if?” For a couple of years after our diagnosis, I could not handle watching a father give away his daughter at a wedding or share the first dance at the reception, because it made me ache to share those moments with my own princess one day. Now, the grief is triggered when I see other girls do something that I wish my own daughter could experience, usually something little, like taking off on a bike to a friend’s house.
Hope
Finally, Rett has taught me and my family to Hope. I hope that one day, my precious, little girl will tell me she loves me, give me a hug and walk away to live her own life. Amazing how visualizing one’s daughter being able to do those things would be such a miraculous dream come true. Hope must be constant and unfaltering. Our family shares a hope for our daughter to continue to grow and learn new skills, and a hope that a cure will be found before the Rett monster breaks our little girl’s body apart.
Instead of a quote for today....I will just leave you with these two pictures of the two of them....as a picture is worth a thousand words..
they were dancing down the sun at the beach
© copyright 2012 – All rights reserved
365 Days Gift
Friday, June 14, 2013
Last Day of School Celebratory Lunch
Today's gift is the last day of school celebratory lunch.
School is out! Summer has officially begun!
This afternoon the kids and I went out to lunch with my aunt and uncle. The kids wanted to take them to one of their favorite places....Bass Pro Shops!
We had the best time. My daughter was in an A+ mood. We enjoyed lunch outside...it was a little breezy, but nonetheless the fresh air was nice. If an onlooker was to look over at us they would think we were one "normal" family. She was being that good. You would only start to notice things were a little different when she was eating as she needs assistance. Of course she enjoyed her favorite meal thoroughly....sliders!
After lunch the kids showed my aunt and uncle around the shop...there is a lot to take in. My daughter was still all smiles.
Fast forward to when we get home and unloaded the car full of all their bags from cleaning out their desks. Well, amongst all their papers were their report cards. No wonder my daughter was in an A+ mood!!! She had gotten not only honor roll for THREE A's and TWO B's, but she also got the BUG Award (Bringing Up Grades). She received one extra A this last nine weeks!!!
I couldn't be more proud of how hard my daughter works every single day. She truly is amazing. Both girls got honor roll all FOUR marking periods. I think we had a GREAT school year and ended the year perfectly!!!
Here is a quote for today.....
She believed she could, so she did- Author Unknown
© copyright 2012 – All rights reserved
365 Days Gift
School is out! Summer has officially begun!
This afternoon the kids and I went out to lunch with my aunt and uncle. The kids wanted to take them to one of their favorite places....Bass Pro Shops!
We had the best time. My daughter was in an A+ mood. We enjoyed lunch outside...it was a little breezy, but nonetheless the fresh air was nice. If an onlooker was to look over at us they would think we were one "normal" family. She was being that good. You would only start to notice things were a little different when she was eating as she needs assistance. Of course she enjoyed her favorite meal thoroughly....sliders!
After lunch the kids showed my aunt and uncle around the shop...there is a lot to take in. My daughter was still all smiles.
Fast forward to when we get home and unloaded the car full of all their bags from cleaning out their desks. Well, amongst all their papers were their report cards. No wonder my daughter was in an A+ mood!!! She had gotten not only honor roll for THREE A's and TWO B's, but she also got the BUG Award (Bringing Up Grades). She received one extra A this last nine weeks!!!
I couldn't be more proud of how hard my daughter works every single day. She truly is amazing. Both girls got honor roll all FOUR marking periods. I think we had a GREAT school year and ended the year perfectly!!!
Here is a quote for today.....
She believed she could, so she did- Author Unknown
© copyright 2012 – All rights reserved
365 Days Gift
Thursday, June 13, 2013
End of the Year Party
***Blogsy did it again....I am doomed typing my posts on an iPad! I apologize again for those who receive my posts via email....
Here is the link to yesterday's gift #317....Happy Birthday "Daddy".
http://www.365daysgift.com/2013/06/happy-birthday-daddy.html
Today's gift is end of the year party.
I honestly can't believe the end of my daughter's 4th grade is here. Tomorrow at 11:00 she will no longer be a 4th grader, but getting ready to enter her last year of elementary school. Where has the time gone?
I feel like it was just yesterday we were walking through the school's doors not knowing what to expect, but knowing all we wanted was for our daughter to have friends and be well liked by her peers. This was our number one priority...socialization. Anything else she learned or gained was icing on the cake to us. And as we know....we have received the icing too! Her school has been AMAZING!
Today, sitting amongst her 4th grade peers, it was apparent our number one goal has been met. Which we knew. But there is something about always seeing it with your own two eyes.
Her friends are amazing. They are kind to her. They are patient with her. They want to help her. They want to be by her side. They include her. They cheer for her. They understand her.
Because of them she is one of the happiest girls in the school. My daughter's 'Anne Sullivan' never gives up on her....and she also never gives up on helping another child understand my daughter. She is the best teacher to all of them when it comes to my daughter. To them she is a 'peer' too, which is great for my daughter. They know and understand the relationship between my daughter and her 'Anne Sullivan' and will often compare them to the real "Anne Sullivan" and Helen Keller.
Right before my daughter's 4th grade teacher showed a slideshow she made of the year they had together she told the class that each and every one of them taught her something this year and helped her grow. I love how she told them this...it isn't always about what the teacher teaches the child, but what the child can teach too. I think this was very important for all the students to hear, but I also loved the fact that my daughter heard it too. Because she teaches everyone....a lot!
As we were having dinner tonight, I was just looking at my daughter thinking...really how can it be you will be in 5th grade next year. It truly feels like just yesterday she was starting 1st grade. At the very time I was thinking this to myself, my middle daughter said it out loud. I told her life flies by and before she knows it her elementary school years will be ending too. She said, she felt this year flew by faster than the others and she wished it could have gone by slower. Me too sweetheart, me too.
Here are two quotes for today....
The bad news is time flies. The good news is you're the pilot- Michael Altshuler
The days are long, but the years are short- Gretchen Rubin
© copyright 2012 – All rights reserved
365 Days Gift
Here is the link to yesterday's gift #317....Happy Birthday "Daddy".
http://www.365daysgift.com/2013/06/happy-birthday-daddy.html
Today's gift is end of the year party.
I honestly can't believe the end of my daughter's 4th grade is here. Tomorrow at 11:00 she will no longer be a 4th grader, but getting ready to enter her last year of elementary school. Where has the time gone?
I feel like it was just yesterday we were walking through the school's doors not knowing what to expect, but knowing all we wanted was for our daughter to have friends and be well liked by her peers. This was our number one priority...socialization. Anything else she learned or gained was icing on the cake to us. And as we know....we have received the icing too! Her school has been AMAZING!
Today, sitting amongst her 4th grade peers, it was apparent our number one goal has been met. Which we knew. But there is something about always seeing it with your own two eyes.
Her friends are amazing. They are kind to her. They are patient with her. They want to help her. They want to be by her side. They include her. They cheer for her. They understand her.
Because of them she is one of the happiest girls in the school. My daughter's 'Anne Sullivan' never gives up on her....and she also never gives up on helping another child understand my daughter. She is the best teacher to all of them when it comes to my daughter. To them she is a 'peer' too, which is great for my daughter. They know and understand the relationship between my daughter and her 'Anne Sullivan' and will often compare them to the real "Anne Sullivan" and Helen Keller.
Right before my daughter's 4th grade teacher showed a slideshow she made of the year they had together she told the class that each and every one of them taught her something this year and helped her grow. I love how she told them this...it isn't always about what the teacher teaches the child, but what the child can teach too. I think this was very important for all the students to hear, but I also loved the fact that my daughter heard it too. Because she teaches everyone....a lot!
As we were having dinner tonight, I was just looking at my daughter thinking...really how can it be you will be in 5th grade next year. It truly feels like just yesterday she was starting 1st grade. At the very time I was thinking this to myself, my middle daughter said it out loud. I told her life flies by and before she knows it her elementary school years will be ending too. She said, she felt this year flew by faster than the others and she wished it could have gone by slower. Me too sweetheart, me too.
waiting patiently to tie-dye and playing pass the shirt with her friends
"Anne Sullivan" being funny when putting on her glove
tie-dying!
Friends
My daughter and "Anne Sullivan"
LISTENING to the teacher talk before the slideshow...JUST.LIKE.HER.PEERS!
The movie is rolling....
Here are two quotes for today....
The bad news is time flies. The good news is you're the pilot- Michael Altshuler
The days are long, but the years are short- Gretchen Rubin
© copyright 2012 – All rights reserved
365 Days Gift
Wednesday, June 12, 2013
Happy Birthday "Daddy"
Today's gift is happy birthday daddy.
I guess by the title of my post you can figure out today is my husband's birthday.
For his special day he went to my daughters school today and had lunch with my oldest ( he had gone not too long ago and had lunch with my middle daughter when she was friend of the week). I loved listening to him talk to her tonight when he came home from work about their lunch together. He said when she saw him in the hall she just lit up and was saying "daddy" over and over again. She definitely loves her daddy!
But I think it is also different when daddy goes up to school versus me, as they see me there weekly. Seeing daddy at school really is a special treat!
After dinner we had birthday apple pie with ice cream (blue bell of course!). When we sing the happy birthday song if my daughter with Rett Syndrome can say the person's name or an approximation, we don't say the birthday boy/girl's name...we let her say it. She loves this part of singing the birthday song.
So tonight when we were singing...."happy birthday dear....", we looked at her and she just grinned from ear to ear, looked right at my husband and said the most sincere and loving "daddy". Wow! Talk about a present!
They truly have a special bond and you could see it in their eyes tonight. I don't know who has who wrapped around their finger more....but I'm going with my daughter!
Here is a quote for today....
My fingers may be small, but I can still wrap daddy around them - Author Unknown
I guess by the title of my post you can figure out today is my husband's birthday.
For his special day he went to my daughters school today and had lunch with my oldest ( he had gone not too long ago and had lunch with my middle daughter when she was friend of the week). I loved listening to him talk to her tonight when he came home from work about their lunch together. He said when she saw him in the hall she just lit up and was saying "daddy" over and over again. She definitely loves her daddy!
But I think it is also different when daddy goes up to school versus me, as they see me there weekly. Seeing daddy at school really is a special treat!
After dinner we had birthday apple pie with ice cream (blue bell of course!). When we sing the happy birthday song if my daughter with Rett Syndrome can say the person's name or an approximation, we don't say the birthday boy/girl's name...we let her say it. She loves this part of singing the birthday song.
So tonight when we were singing...."happy birthday dear....", we looked at her and she just grinned from ear to ear, looked right at my husband and said the most sincere and loving "daddy". Wow! Talk about a present!
They truly have a special bond and you could see it in their eyes tonight. I don't know who has who wrapped around their finger more....but I'm going with my daughter!
Here is a quote for today....
My fingers may be small, but I can still wrap daddy around them - Author Unknown
Tuesday, June 11, 2013
A "Grown Up" Cup
Today's gift is a grown up cup.
We are very blessed that my daughter can say some words. One of them being cup...which is huge. When she says "cup" then she is communicating to us she is thirsty.
With three kids in the house and one being a swiper I tend to have the kids use plastic (bpa free of course) cups in case they were to be knocked over or something. I am all about my daughter feeding herself when she can, so if the cup is not breakable it is one less thing I have to worry about...and her too.
Tonight, at dinner she had a plastic cup just like her siblings. My mother in law had a tervis tumbler and I had a glass. She kept saying "cup", so I would give her her cup. But while she was saying "cup" she was pointing to the "grown up" cups. She didn't want her plastic cup, she wanted one of ours.
I showed her which cup was hers if she wanted it. Eventually, she drank her water.
After dinner, she was cruising the island and said "cup" again. When I went to get her cup she shook her head no and pointed to my glass. I said, "oh, you want a big girl cup" and she said "la"...her yes.
I believe it was just the other night I mentioned she maturing in more ways than one. I think tonight is another example. She is ready for the next step in what cups and plates she uses during meals. I think this is a sign from her to me, that she is getting older and the plastic isn't going to cut it much longer. She doesn't need china and crystal, but moving up from plastic would be nice!
It was the perfect reminder that yes, she is a tween and in another year will be a true teenager. And yes I need to be mindful that even though she has Rett Syndrome, she still can feel self conscious about things....one maybe being using what she considers "little kid cups". Having her tell me this in her own way was the best way for me to realize that yes...she is growing up...and I need to remember this in all aspects of her life.
Here is a quote for today...
The only time you should ever look back is to see how far you have come- Author Unknown
© copyright 2012 – All rights reserved
365 Days Gift
We are very blessed that my daughter can say some words. One of them being cup...which is huge. When she says "cup" then she is communicating to us she is thirsty.
With three kids in the house and one being a swiper I tend to have the kids use plastic (bpa free of course) cups in case they were to be knocked over or something. I am all about my daughter feeding herself when she can, so if the cup is not breakable it is one less thing I have to worry about...and her too.
Tonight, at dinner she had a plastic cup just like her siblings. My mother in law had a tervis tumbler and I had a glass. She kept saying "cup", so I would give her her cup. But while she was saying "cup" she was pointing to the "grown up" cups. She didn't want her plastic cup, she wanted one of ours.
I showed her which cup was hers if she wanted it. Eventually, she drank her water.
After dinner, she was cruising the island and said "cup" again. When I went to get her cup she shook her head no and pointed to my glass. I said, "oh, you want a big girl cup" and she said "la"...her yes.
I believe it was just the other night I mentioned she maturing in more ways than one. I think tonight is another example. She is ready for the next step in what cups and plates she uses during meals. I think this is a sign from her to me, that she is getting older and the plastic isn't going to cut it much longer. She doesn't need china and crystal, but moving up from plastic would be nice!
It was the perfect reminder that yes, she is a tween and in another year will be a true teenager. And yes I need to be mindful that even though she has Rett Syndrome, she still can feel self conscious about things....one maybe being using what she considers "little kid cups". Having her tell me this in her own way was the best way for me to realize that yes...she is growing up...and I need to remember this in all aspects of her life.
Here is a quote for today...
The only time you should ever look back is to see how far you have come- Author Unknown
© copyright 2012 – All rights reserved
365 Days Gift
Monday, June 10, 2013
Just Kidding
Today's gift is just kidding.
As you know we are still learning PODD....all of us. It really is like learning another language. And it takes time.
This evening we were having dinner and she was being a little stinker. In between bites she was swiping the napkins off the table and trying to get me to look in one direction and then pull a fast one on me in another direction. All while I am not only trying to feed her, but also myself. I really did feel like an octopus at times as my hands and arms where going in too many directions. She thought she was being quite funny.
I talked to her with her iPODD and told her "you stop".
Then she told me, "I have to tell you a secret". To which I said, "you do".
Then she told me, "I'm just kidding"....and starting laughing!
She did this twice.
I love how she was able to have a sense of humor using her iPODD and how she knew she was being funny. But then again, I wonder if she truly has the last laugh. I wonder if she does have a secret, but isn't telling me...just like a typical tween!
Here is a quote for today...
If you obey all the rules, you miss all the fun- Katharine Hepburn
© copyright 2012 – All rights reserved
365 Days Gift
As you know we are still learning PODD....all of us. It really is like learning another language. And it takes time.
This evening we were having dinner and she was being a little stinker. In between bites she was swiping the napkins off the table and trying to get me to look in one direction and then pull a fast one on me in another direction. All while I am not only trying to feed her, but also myself. I really did feel like an octopus at times as my hands and arms where going in too many directions. She thought she was being quite funny.
I talked to her with her iPODD and told her "you stop".
Then she told me, "I have to tell you a secret". To which I said, "you do".
Then she told me, "I'm just kidding"....and starting laughing!
She did this twice.
I love how she was able to have a sense of humor using her iPODD and how she knew she was being funny. But then again, I wonder if she truly has the last laugh. I wonder if she does have a secret, but isn't telling me...just like a typical tween!
Here is a quote for today...
If you obey all the rules, you miss all the fun- Katharine Hepburn
© copyright 2012 – All rights reserved
365 Days Gift
Sunday, June 9, 2013
No Napping in the Car
Today's gift is no napping in the car.
You might laugh that this is my gift today.
Napping for my daughter sometimes can be the kiss of death at bedtime. And tomorrow starts their last week of school. So naturally I want her to be able to go to bed (at her regular bedtime) and get a good nights sleep.
I know tomorrow is going to be hard for her to get up anyway as we had a busy and fun filled weekend. So if she fell asleep in the car today, it could have caused bedtime problems. Thankfully, she did not nap and she drifted off to dreamland beautifully. If I could only say the same for her two siblings....who did nap...TWICE!!!
Usually I do not care if she drifts off for a little bit, but I didn't want her to start her last school week off on a tired note! On our next road trip in 20 days she can take all the naps she wants!
Here is a quote for today....
Be happy...not because everything is good, but because you can see the good in everything- Author Unknown
© copyright 2012 – All rights reserved
365 Days Gift
You might laugh that this is my gift today.
Napping for my daughter sometimes can be the kiss of death at bedtime. And tomorrow starts their last week of school. So naturally I want her to be able to go to bed (at her regular bedtime) and get a good nights sleep.
I know tomorrow is going to be hard for her to get up anyway as we had a busy and fun filled weekend. So if she fell asleep in the car today, it could have caused bedtime problems. Thankfully, she did not nap and she drifted off to dreamland beautifully. If I could only say the same for her two siblings....who did nap...TWICE!!!
Usually I do not care if she drifts off for a little bit, but I didn't want her to start her last school week off on a tired note! On our next road trip in 20 days she can take all the naps she wants!
Here is a quote for today....
Be happy...not because everything is good, but because you can see the good in everything- Author Unknown
© copyright 2012 – All rights reserved
365 Days Gift
Saturday, June 8, 2013
Making Her Rounds
Today's gift is making her rounds.
As you know from yesterday's post today we celebrated my grandmother's 85th birthday. We celebrated with 90 family members. We celebrated with lots of food and drinks. We celebrated!
I had not seen many of my extended family for years...like over 15 years! The last time I saw many of them my youngest cousins were the age of my middle daughter...and now they are college graduates! Talk about feeling old!
For many of my extended family they had never met my children....heard lots about them, but never met. Needless to say we had lots of introducing to do! My daughter was such a sport today!
Between all the new faces, a new place, lots of noise (between the music and lots of Italians!) and a long day my daughter was incredible! She made her rounds meeting everyone. She told them "hi", that she was "good" and blew them kisses. She had some favorites too and would instantly give them a smile.
I was really proud of her for being so calm in a setting that could have been extremely overwhelming. She wasn't phased in the least and enjoyed celebrating just like everyone else!
I know she will remember today and all the people she met. As I have said before she never forgets a face! I can't wait to show her pictures from today and see if she can point out the family members she really connected with!
It was a fast trip. 844 miles in less than 60 hours...once we get home tomorrow. It was an incredible trip to see so many people come together to celebrate my grandmother's 85th. I know it was a special day for her, but it was also a special day for me. I miss our big Italian family gatherings and I was so excited my children were able to experience what I grew up with today. Let's just hope the next one is not 15 years down the road!
Here is a quote for today...
Family, like branches on a tree, we all grow in different directions, yet our roots remain as one- Author Unknown
Friday, June 7, 2013
Driving Her Sister Crazy
Today's gift is driving her sister crazy.
To say I'm tired is an understatement! We drove 422 miles today so we can celebrate my grandmother's 85th birthday tomorrow. The drive was supposed to be 6 hours 53 minutes...but due to the rain from Tropical Storm Andrea, it turned into a 11 hour drive! 11 hours!
My grandmother is worth every second though!
The kids were overall really good. They started to get restless with one hour left...I was too! My daughter with Rett Syndrome was super...she was great...she was funny.
If she wasn't trying to roll down her window (thank goodness for window locks) then she was turning the light on and off in the 2nd row right next to the tv. My middle daughter was sitting in the 3rd row with my son and she kept telling her sister to stop as it was putting a glare on the screen.
Do you think she stopped?
Nope! It only fueled the fire. She kept turning it on and off and on and off and laughing hysterically. This was driving her sister crazy. And I loved every second of it!
Why?
Because it was 100% typical! She was teasing her sister just like so many sisters and bothers do.
Even though she drove her sister crazy in the car, my middle daughter knows now how funny it really was (after the fact) as she is smiling while I type this...and reading over my shoulder. But I think she really knows it truly was a typical moment they shared!
Here is a quote for today....
I smile because you are my sister. I laugh because there is nothing you can do about it- Author Unknown
To say I'm tired is an understatement! We drove 422 miles today so we can celebrate my grandmother's 85th birthday tomorrow. The drive was supposed to be 6 hours 53 minutes...but due to the rain from Tropical Storm Andrea, it turned into a 11 hour drive! 11 hours!
My grandmother is worth every second though!
The kids were overall really good. They started to get restless with one hour left...I was too! My daughter with Rett Syndrome was super...she was great...she was funny.
If she wasn't trying to roll down her window (thank goodness for window locks) then she was turning the light on and off in the 2nd row right next to the tv. My middle daughter was sitting in the 3rd row with my son and she kept telling her sister to stop as it was putting a glare on the screen.
Do you think she stopped?
Nope! It only fueled the fire. She kept turning it on and off and on and off and laughing hysterically. This was driving her sister crazy. And I loved every second of it!
Why?
Because it was 100% typical! She was teasing her sister just like so many sisters and bothers do.
Even though she drove her sister crazy in the car, my middle daughter knows now how funny it really was (after the fact) as she is smiling while I type this...and reading over my shoulder. But I think she really knows it truly was a typical moment they shared!
Here is a quote for today....
I smile because you are my sister. I laugh because there is nothing you can do about it- Author Unknown
Thursday, June 6, 2013
Adjustments Getting Easier
Today's gift is her adjustments are getting easier.
This afternoon my daughter had her chiropractor appointment. Every time I mention his name to her she lights up and is all smiles! I think it is safe to say she enjoys going.
And I think it is very safe to say it is working! She walking and balance are incredible!!!!
She rocked it today! Let him adjust her in a place he has been trying but she hasn't been relaxed enough...until today. And she had her head down the whole time!!!
At the end of each session most people get to lie on the wave table (intersegmental traction). She has only done this once. After each session we walk by the table and ask her and she shakes her head no....and we listen. In due time...in due time.
Well, today we asked her and she didn't say no AND she didn't say yes. So we tried it! And this was the expression on her face....
© copyright 2012 – All rights reserved
365 Days Gift
This afternoon my daughter had her chiropractor appointment. Every time I mention his name to her she lights up and is all smiles! I think it is safe to say she enjoys going.
And I think it is very safe to say it is working! She walking and balance are incredible!!!!
She rocked it today! Let him adjust her in a place he has been trying but she hasn't been relaxed enough...until today. And she had her head down the whole time!!!
At the end of each session most people get to lie on the wave table (intersegmental traction). She has only done this once. After each session we walk by the table and ask her and she shakes her head no....and we listen. In due time...in due time.
Well, today we asked her and she didn't say no AND she didn't say yes. So we tried it! And this was the expression on her face....
What do you think? Do you think she liked it?
I am beyond thrilled in how mature my daughter is getting. She surprises me every day with a new gift and I love watching her grow.
Here is a quote for today....
Very few blessings and very few extraordinary things ever happen when you live in the safe zone all the time- Author Unknown
© copyright 2012 – All rights reserved
365 Days Gift
Wednesday, June 5, 2013
Being a Big Helper
***If you receive my blog daily by email, then you probably realized yesterday's post was a duplicate. I was having blogger issues and when I blogging on blogsy it deleted my May 23rd post and replaced it with yesterdays. However, when I corrected everything, it sent out the last one I corrected, which was May 23rd's blog! I am so sorry!
To read last night's blog....Wike to Bike, please visit this link http://www.365daysgift.com/2013/06/wike-to-bike.html
Today's gift is being a big helper.
Why do little things happen, when you don't have your camera with you?!?!?
I was putting away laundry and carrying two big things with both of my hands. The basket in my left hand had two handles, one of which I was holding onto. My daughter was walking in front of me and talking to me while I was doing all the work (lol!).
As we were coming down the hall she stopped, turned around, grabbed on to the "extra" handle, and started walking to my room! I couldn't believe it! She was helping me!!!!
More impressive, is the fact she saw that I could have used an extra set of hands!!!!
I was so proud of her and wished I had my phone on me so I could have captured this special moment with her.
Lately, she has been amazing...especially with listening and helping me. I love it! Actually, she did another "first" today too.
My son had his 6th birthday party today even though his birthday is not until July as we had a conflict and we also wanted to make sure his friends could come and not be traveling on a summer vacation. He didn't open all his presents right away, as I asked him to wait till his sisters came home as they would love to watch him. And as luck would have it, he fell asleep while I was picking them up from school.
For TWO hours, all his presents remained on a table and my daughter NEVER touched one. Didn't even try! No swiping!!!
Again, so proud of all her accomplishments!!! They may be little to some people, but they are HUGE to us.
Here is a quote for today....
The more we work to help others get ahead, the more we begin to enjoy the life we are living- Joshua Becker
© copyright 2012 – All rights reserved
365 Days Gift
To read last night's blog....Wike to Bike, please visit this link http://www.365daysgift.com/2013/06/wike-to-bike.html
Today's gift is being a big helper.
Why do little things happen, when you don't have your camera with you?!?!?
I was putting away laundry and carrying two big things with both of my hands. The basket in my left hand had two handles, one of which I was holding onto. My daughter was walking in front of me and talking to me while I was doing all the work (lol!).
As we were coming down the hall she stopped, turned around, grabbed on to the "extra" handle, and started walking to my room! I couldn't believe it! She was helping me!!!!
More impressive, is the fact she saw that I could have used an extra set of hands!!!!
I was so proud of her and wished I had my phone on me so I could have captured this special moment with her.
Lately, she has been amazing...especially with listening and helping me. I love it! Actually, she did another "first" today too.
My son had his 6th birthday party today even though his birthday is not until July as we had a conflict and we also wanted to make sure his friends could come and not be traveling on a summer vacation. He didn't open all his presents right away, as I asked him to wait till his sisters came home as they would love to watch him. And as luck would have it, he fell asleep while I was picking them up from school.
For TWO hours, all his presents remained on a table and my daughter NEVER touched one. Didn't even try! No swiping!!!
Again, so proud of all her accomplishments!!! They may be little to some people, but they are HUGE to us.
Here is a quote for today....
The more we work to help others get ahead, the more we begin to enjoy the life we are living- Joshua Becker
© copyright 2012 – All rights reserved
365 Days Gift
Tuesday, June 4, 2013
Wike to Bike
Today's gift is wike to bike.
This past weekend I wrote a post about how my daughter loves her Wike, the jogger/bike trailer. I also mentioned how in the past she has not enjoyed riding bikes. From tricycles to bikes with training wheels...never interested.
Her therapists have tried many times to get her on a bike for children with special needs...a bike which has been "modified"...a bike with three wheels. And still she has showed no interest. In fact on many occasions she has gotten upset and mad. Because of these instances I have come to the conclusion she does not like riding a bike...and I am okay with this.
However, her physical therapist wants her to keep trying. Every time her physical therapist mentions it to me at therapy I say, "oh please don't make my daughter upset"! We then look at my daughter for her facial expressions. If she doesn't want to get on and is adamant about it, then we do not push her.
Today was a different story.
I heard them talking about trying the bike....and I was in the other room praying she would not get upset if they put her on. Even her little brother was telling them to please not make her mad. My daughter even shook her head no.
Instead of asking her if she wanted to get on, one of the therapists got on the bike to show her how much fun she was missing. She even had my son in run in front of her to pretend she was going to run him over. This actually got a giggle out of my daughter. This actual interested my daughter. My daughter actually got on the bike!
Not only did she get on, she smiled, laughed and pedaled!!! I couldn't believe my eyes! We were so proud of her that both me and the therapist were taking pictures of this special moment! This is a huge accomplishment!
Will she want to get on it again? I have no idea. Will her therapist try? You bet! I just hope every time she rides a bike from her on she remembers this happy experience today.
Here is a quote for today....
I'm not telling you it is going to be easy, I'm telling you it is going to be worth it- Author Unknown
This past weekend I wrote a post about how my daughter loves her Wike, the jogger/bike trailer. I also mentioned how in the past she has not enjoyed riding bikes. From tricycles to bikes with training wheels...never interested.
Her therapists have tried many times to get her on a bike for children with special needs...a bike which has been "modified"...a bike with three wheels. And still she has showed no interest. In fact on many occasions she has gotten upset and mad. Because of these instances I have come to the conclusion she does not like riding a bike...and I am okay with this.
However, her physical therapist wants her to keep trying. Every time her physical therapist mentions it to me at therapy I say, "oh please don't make my daughter upset"! We then look at my daughter for her facial expressions. If she doesn't want to get on and is adamant about it, then we do not push her.
Today was a different story.
I heard them talking about trying the bike....and I was in the other room praying she would not get upset if they put her on. Even her little brother was telling them to please not make her mad. My daughter even shook her head no.
Instead of asking her if she wanted to get on, one of the therapists got on the bike to show her how much fun she was missing. She even had my son in run in front of her to pretend she was going to run him over. This actually got a giggle out of my daughter. This actual interested my daughter. My daughter actually got on the bike!
Not only did she get on, she smiled, laughed and pedaled!!! I couldn't believe my eyes! We were so proud of her that both me and the therapist were taking pictures of this special moment! This is a huge accomplishment!
She is trying to catch her brother!
Laughing away!
Looking over at another mom for approval!
So proud of herself!
Will she want to get on it again? I have no idea. Will her therapist try? You bet! I just hope every time she rides a bike from her on she remembers this happy experience today.
Here is a quote for today....
I'm not telling you it is going to be easy, I'm telling you it is going to be worth it- Author Unknown
Monday, June 3, 2013
To Modify
Today's gift is to modify.
Until my daughter with special needs was diagnosed with Rett Syndrome, I think it would be accurate to say we did everything "by the book". We did things "by the book" until "the book" didn't work anymore.
Since my daughter was at least four years old everything she has learned has been modified in one way or another to benefit her. By modifying life for her, she has taught us there is not just one or two ways to do something, but many. This skill she taught us has helped us in more ways than one.
For example, I will use my daughter's walking issues which I have mentioned a lot recently. She wears a brace on her left leg to help keep her heal to the ground. She is to wear this brace at least 8 hours a day. I can't even imagine having this piece of plastic strapped to my leg in 90 degree weather! Since adding the chiropractor into her rotation of weekly therapies, we have noticed her walking has only gotten better. He is able to work her hip, where she is really tight (which is why she keeps her heal off the ground on the left side) and it has helped her tremendously! The chiropractor-physical therapy combination is a big bonus right now for her!
We started to notice too that her walking was also better when she wasn't wearing her brace. But she is supposed to wear it 8 hours a day....what do we do?!?! We modify what she is doing.
No one knows her better than those who work and live with her every....single....day. No one wants her walking like the old days than those who are her biggest cheerleaders! So we decided to "modify" her brace schedule. Instead of wearing it every day, she is now wearing it every other day. And her walking is AMAZING....again!
What works for one patient, may not work for another. What works for my daughter, may not work for another girl with Rett Syndrome. This is what makes us all unique. But I will never know if I never try things for her. Just like the chiropractor....it had been on my mind for months....and finally I did it! And boy am I glad I did!
It is okay to modify. We all learn differently. We all heal differently. We are all different. You never know what may work until you give it a try.
Here is a quote for today....
I would rather have a life of "oh wells" than a life of "what ifs"- Author Unknown
© copyright 2012 – All rights reserved
365 Days Gift
Until my daughter with special needs was diagnosed with Rett Syndrome, I think it would be accurate to say we did everything "by the book". We did things "by the book" until "the book" didn't work anymore.
Since my daughter was at least four years old everything she has learned has been modified in one way or another to benefit her. By modifying life for her, she has taught us there is not just one or two ways to do something, but many. This skill she taught us has helped us in more ways than one.
For example, I will use my daughter's walking issues which I have mentioned a lot recently. She wears a brace on her left leg to help keep her heal to the ground. She is to wear this brace at least 8 hours a day. I can't even imagine having this piece of plastic strapped to my leg in 90 degree weather! Since adding the chiropractor into her rotation of weekly therapies, we have noticed her walking has only gotten better. He is able to work her hip, where she is really tight (which is why she keeps her heal off the ground on the left side) and it has helped her tremendously! The chiropractor-physical therapy combination is a big bonus right now for her!
We started to notice too that her walking was also better when she wasn't wearing her brace. But she is supposed to wear it 8 hours a day....what do we do?!?! We modify what she is doing.
No one knows her better than those who work and live with her every....single....day. No one wants her walking like the old days than those who are her biggest cheerleaders! So we decided to "modify" her brace schedule. Instead of wearing it every day, she is now wearing it every other day. And her walking is AMAZING....again!
What works for one patient, may not work for another. What works for my daughter, may not work for another girl with Rett Syndrome. This is what makes us all unique. But I will never know if I never try things for her. Just like the chiropractor....it had been on my mind for months....and finally I did it! And boy am I glad I did!
It is okay to modify. We all learn differently. We all heal differently. We are all different. You never know what may work until you give it a try.
Here is a quote for today....
I would rather have a life of "oh wells" than a life of "what ifs"- Author Unknown
© copyright 2012 – All rights reserved
365 Days Gift
Sunday, June 2, 2013
Stair Chair
Today's gift is a stair chair.
Well, the time has come. The time I hate to admit had to come. The time where we had to put our pride aside and do what was in the best interest for us....for our family....for our daughter.
We got a stair chair.
You know, the one you usually see in the commercials with the older couple using it to get up and down the stairs. The one I can honestly say I never thought would be part of my home.
It had to happen. My daughter was getting to be too hard to walk up the stairs. I could carry her, but it is not good for me to carry her as she is more than half my body weight and almost as tall as me. Walking her down the stairs was easier, but still dangerous.
It had to happen to keep everyone safe....everyone who helps us with her care. The stairs make me so nervous without her walking issues, so with her walking issues it was only a matter of time before someone took a tumble. And I did not want to wait for that moment.
It was not an easy decision.
We know our daughter has Rett Syndrome. We do not need reminders about this fact. I think making this decision to get a stair chair was one of those decisions we knew was right, but didn't want to get it as it was just another slap in the face from the Rett Monster. It was another way to us the Rett Monster had won.
Well it was installed this past week and there is no turning back. Have my feelings changed now that it is a part of our family...a part of our life....a part of our home? Yes and No.
I still do not like looking at it. It is just a constant reminder of how Rett has taken away yet something else from my daughter. It isn't the nicest thing to look at either. But if you know me....I picked the chair that was not leather, so I could change the fabric on the chair to coordinate with the colors in the house. To make it more personal to us....to my daughter.
On the other hand, yes my feelings have changed. It makes it incredibly easier to get her upstairs now. I do not have to worry about us falling. I do not have to be afraid. I do not have to worry about anyone else walking her up or down the stairs. It is one less thing I have to worry about. Since Thursday I haven't worried about the stairs AT ALL! Now this is a great feeling!!!!
And my daughter loves it! She loves to use her words to tell us to "go up" when we buckle her in. She thinks it is a mini roller coaster in her home. My other children love it too! Though we tell them they can not ride it, as it is for their sister. This is extremely hard for the youngest one to understand...right now....but he is getting there. They love to be able to help her up and down now too!
All in all, it was a hard decision, but the right decision.
Here is a quote for today....
You never know how strong you are until being strong is the only choice you have- Author Unknown
© copyright 2012 – All rights reserved
365 Days Gift
Well, the time has come. The time I hate to admit had to come. The time where we had to put our pride aside and do what was in the best interest for us....for our family....for our daughter.
We got a stair chair.
You know, the one you usually see in the commercials with the older couple using it to get up and down the stairs. The one I can honestly say I never thought would be part of my home.
It had to happen. My daughter was getting to be too hard to walk up the stairs. I could carry her, but it is not good for me to carry her as she is more than half my body weight and almost as tall as me. Walking her down the stairs was easier, but still dangerous.
It had to happen to keep everyone safe....everyone who helps us with her care. The stairs make me so nervous without her walking issues, so with her walking issues it was only a matter of time before someone took a tumble. And I did not want to wait for that moment.
It was not an easy decision.
We know our daughter has Rett Syndrome. We do not need reminders about this fact. I think making this decision to get a stair chair was one of those decisions we knew was right, but didn't want to get it as it was just another slap in the face from the Rett Monster. It was another way to us the Rett Monster had won.
Well it was installed this past week and there is no turning back. Have my feelings changed now that it is a part of our family...a part of our life....a part of our home? Yes and No.
I still do not like looking at it. It is just a constant reminder of how Rett has taken away yet something else from my daughter. It isn't the nicest thing to look at either. But if you know me....I picked the chair that was not leather, so I could change the fabric on the chair to coordinate with the colors in the house. To make it more personal to us....to my daughter.
On the other hand, yes my feelings have changed. It makes it incredibly easier to get her upstairs now. I do not have to worry about us falling. I do not have to be afraid. I do not have to worry about anyone else walking her up or down the stairs. It is one less thing I have to worry about. Since Thursday I haven't worried about the stairs AT ALL! Now this is a great feeling!!!!
And my daughter loves it! She loves to use her words to tell us to "go up" when we buckle her in. She thinks it is a mini roller coaster in her home. My other children love it too! Though we tell them they can not ride it, as it is for their sister. This is extremely hard for the youngest one to understand...right now....but he is getting there. They love to be able to help her up and down now too!
All in all, it was a hard decision, but the right decision.
Here is a quote for today....
You never know how strong you are until being strong is the only choice you have- Author Unknown
© copyright 2012 – All rights reserved
365 Days Gift
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