Sunday, September 30, 2012

Her Love for Her Siblings

Today's gift is HER love for her siblings.

As I mentioned in yesterday's post, I was out of town for the night with my middle daughter and her friends celebrating her birthday.  We came home early this afternoon so we could still have family time before dinner and we had to get in the "get ready for the school week mode".   My daughter with special needs, was very excited to see us and I think she missed me as she said my name nonstop today!

This evening after dinner, my son asked if he could help my daughter open a present which my middle daughter bought for her on our trip....of course I said yes.  So all three of my children were on the sofa sitting next to each other and you could just see in my daughter's eyes how much she loved the attention her siblings were giving to her.   She was taking it all in and loving every second of it.

For 20 minutes (at least) they were having the best time as siblings.  They were helping her with her new miniature doll, reading the story the doll came with, and just watching their sister interact with her new gift.  I not only loved watching all three of them interact in such a genuine way, but I loved watching my daughter with special needs during this moment.  So often my kids go off and running in multiple directions and LONG bonding times like these (with all 3 kids) is not as common.  My daughter and her sister have lots of bonding moments and my son and his sister with special needs are getting closer as he gets older, however, she is always on his mind and he talks about her often.

Tonight I could see in my daughter's eyes and by the glow on her face, she loves her siblings.  She loves them for being there for her, she loves them for how they make her feel, she loves them for believing in her and she JUST loves them!  They made her extremely happy tonight and in return they made me extremely proud!

Here are a couple of quotes for tonight....

A sister is a gift to the heart, a friend to the spirit, a golden thread to the meaning of life- Isadora James

Sometimes being a brother is even better than being a superhero- Marc Brown

Saturday, September 29, 2012

Her Beautiful Face

Today's gift is her beautiful face.

 

My middle daughter's birthday is this coming Wednesday. I have been trying to get her away from having birthday parties and to do something fun with a few friends. This year she finally took me up on my offer! Today I took her and three of her friends to the American Girl Store and we are spending the night in a hotel! She is having the best time!

Of course, being away with her means I am away from my other two children. However, thanks to the iPhone I can FaceTime then! I love FaceTime and am so thankful to be able to see my kids when I am away from them.

Tonight when I FaceTimed my other two children, I gave my daughter a kiss and she looked right at me and kept getting closer and closer to her iPad to see my picture and then gave me a kiss right back! I loved it! It was second best to the real thing.

Even though I couldn't be there in person to give her a kiss and to tuck her and my son in, seeing their faces before they went to bed wasn't too bad. I love how technology has come such a long way and how it truly has made an impact on the lives of families like mine who have a child with special needs. When we are not with our children them seeing our faces AND hearing our voices is not only important to them, but comforting. I know my daughter was at ease a little bit more with me and her sister being gone for one night since she still was able to see me tonight. And I will be able to sleep a little better tonight knowing I saw her beautiful face too!

Here are a couple of quotes for tonight....

 

Thank heaven for little girls- Author Unknown

The world is full of beautiful things, just like you- Author Unknown




Friday, September 28, 2012

Her Smile

Today's gift is her smile.

On Friday afternoon's my daughter's music therapist comes to the house. They have a 30 minute session and then my middle daughter takes piano lessons from her for another 30 minutes. This is the first time we have done music therapy....and so far so good. Actually, she loves it!

The drum is by far her favorite instrument. She has a ton of fun banging on the drum, like she is releasing stress....and I am sure she is! Maybe I need to buy a drum to beat on too! Today she was introduced to another item in music therapy. They were rings which had ribbons attached to them and they were hanging down. You just hold onto the rings and move the ribbons around.

Music therapy is held in a room off of our family room which has doors we can close to tune out any extra noise, but I can still watch as the doors have glass panes. While my daughter with special needs was having her session I was going over my middle daughter's papers she brought home from school. We were sitting on the chair together and we both looked in on my oldest daughter. She was moving the ring with the ribbons on it back and forth so rhythmically with the biggest smile on her face!

We both just stared at her and watched her as she was having the best time. Then my middle daughter said, "oh wow, I love seeing her smile like that"... Yes honey I love seeing her smile like this too! But to hear in my middle daughter's voice the sheer excitement...love...awe...(honestly I don't even know what to call it) as she described seeing her sister smile...seeing her sister so happy...made my want to do nothing else, but smile too!

It made me think of the song by a much loved artist in our house....Justin Bieber...."You Smile"...'you smile I smile (oh), cause whenever you smile I smile'. This couldn't be more true for me and my daughter...her smile is contagious and when she smiles, I definitely smile....we all smile!

 

Here are some quotes for today....

A smile is a curve that sets everything straight- Phyllis Diller

Most smiles are started by another smile- Author Unknown

As long as you live, keep smiling because it brightens everybody's day -Vin Scully

 

Thursday, September 27, 2012

Never Underestimate

Today's gift is never underestimate.

As I mentioned in yesterday's post my daughter loves her iPad.  When we bought her one two years ago, she immediately loved looking at pictures and listening to music.  It was actually looking at all her pictures, which helped her learn the "swiping" movement to make the screen advance.

It didn't take long for her to not only maneuver her way around her iPad, but to also figure out how to delete items as well...items we did NOT want deleted.  She has a new iPad now, one with a camera built in so we can not only take pictures of items we want her to have access to on the iPad, but also of her friends.  She loves looking at pictures of her friends!

Her brother and sister also like her iPad with the built in camera as their iPads do not have one...and of course, we always want what we don't have.  There is one little person in this house....the youngest child...who loves to take picture....after picture.....after picture...until we find we have over 300 pictures on her iPad.  And the one who usually finds it is our daughter's teacher!  I think he has finally gotten the message about NO MORE PICTURES!

However, about a month ago I noticed she had around 50 random pictures on her iPad again.  I was just getting ready to ask her brother if he could possibly know anything about this, when I noticed consistencies in the pictures.  I kept noticing my daughter's leg, her foot, her shoe, her hand....and then realized SHE found the camera and was taking pictures!  I couldn't believe it!  I kept them on the iPad to see if her teacher said anything....and she did.  I was so excited to tell her to look closely at the pictures and when she did, she was equally excited for my daughter!

There will be days, when I hear the noise of the camera going off...non-stop like the paparazzi are in my family room...and I just love looking to see what angle she is holding her iPad to see what interests her enough to snap away.

After this little "mystery" with the iPad I learned to never underestimate her...anymore!  Today, her main communication software was not talking back to her when she would hit a button...kinda defeats the purpose of using the software.  I tried all the tricks in the book which have worked in the past to no avail.  What confused me the most was the fact her music and other apps worked with the volume, but her main communication app would not!

My mom was here today and I was thinking out loud and said, "I wonder what she hit now"....to which my mother said, "she probably didn't do anything"....and I thought to myself....the way she works her iPad, I have no doubt she pressed some button.  Finally I had to email the AT department at her school to ask for some suggestions...which then lead to a phone call.  After talking with them and we were finally about to delete and reload the app, I mentioned in the past she had "muted" her iPad, but I assumed if she hit mute, then all apps would be muted...which is not the case.  I was so happy I mentioned this to her!  My daughter also has a new, military proof case on her iPad and I could not even look on the outside of the iPad to see if it was muted...so I knew there was no way she could have muted it this way....there had to be another way....or this was not the problem at all.

Of course, there was another way to mute it...and it involves hitting the home button fast twice....which my daughter does....often....and a menu pops up at the bottom of the iPad screen.  You then slide left to right and on the far left you will not only see a volume level indicator....but a mute button.  Guess what....she turned mute on!  I had NO idea this was an option....this way!  She is teaching me more about this iPad than I am learning on my own!

Nothing surprises me anymore and I love how she is truly exploring on her own!  I just hope one day it doesn't cost me a hefty bill on iTunes...so far so good!

Here are two quotes for today...

Never underestimate the power of a girl who knows what she wants-  Unknown

Never underestimate the power of dreams and the influence of the human spirit.  We are all the same in this notion: The potential for greatness lives within each of us. - Wilma Rudolph






Wednesday, September 26, 2012

Her love for music #1

My daughter LOVES music. It makes her happy, it makes her relatable to her peers, it makes her relax in stressful situations, it makes her want to have impromptu dance parties....it is something she has to have everyday.

I labeled this post #1 as I know there are going to be other posts in the next 300 days which will incorporate her love of music. However, today her love for music revolves around her playing DJ!

My daughter uses an iPad as her communication device, as does pretty well with it. I love how she can use a device her peers are also using...some for the same apps and others are different. The one app they all have in common is music. She loves going to her music and picking what music she wants to hear by viewing the album cover. My daughter enjoys different genres too...country, reggae, hip hop, rock, pop, dance....pretty much everything but opera!

Today the kids had a student holiday at school so we went to visit my parents. On our way home my daughters were playing DJ in the backseat with my iPhone. They were taking turns picking what song they wanted to listen to and dance to in the car. I was so excited seeing my daughter with special needs use my iPhone versus the iPad as the screen is much smaller.

Her music selections we enjoyed on our way home today were...Boyfriend, by Justin Bieber (twice!)....Circus, by Brittany Spears...Determinate, by Lemonade Mouth....What Makes You Beautiful by One Direction...One Thing by One Direction...Rumour Has It by Adele...

As you can see she enjoys a little bit of everything! I could have driven much further just to listen to my daughter pick her musical selections for our ride home today and to have her interacting age appropriately with her sister. It is almost like I had two gifts in one day!

Here are some quotes for today....

I think music in itself is healing. It's an explosive expression of humanity. It's something we are all touched by. No matter what culture we're from, everyone loves music - Billy Joel

Music is well said to be the speech of angels - Thomas Carlyle

Music is the best means we have of digesting time - W. H. Auden

 

Tuesday, September 25, 2012

Being Yourself

Today's gift is being yourself.

This is probably one of the best gifts my daughter has given to me.  Throughout life we try so many times to "impress" people for whatever reason.  We want to keep up with the Jones' when we can't even keep up with ourselves.  It does nothing but drive ourselves crazy and waste time...and time isn't something we should waste uselessly.

When you meet my daughter, there is no sugar coating or excuses or impressing...what you see is what you get.  And what you see is a beautiful, intelligent, funny, determined, outgoing child who wants nothing more than to be happy, have fun and be loved.  She doesn't "try" to be anyone else, but herself,  and interestingly enough she is trying to be her best self and this isn't an easy task for her due to the daily struggles of Rett Syndrome.  My daughter of all people should be the one trying to be someone else, but she isn't.

She has taught me to be thankful for what I have....whatever it is, for you never know when something can be taking away from you.  She has taught me the material things don't matter, they can be replaced.  She has taught me just to be myself and by being myself I will be happier than ever.  Guess what....she is absolutely correct...I am!

I am an open book.  If you met me for the first time and you ask me about my family...I will tell you have three children....their ages and will explain to you how my oldest has a rare neurological disorder called Rett Syndrome.  I don't hide anything.  This is who I am, this is who our family is and by me being myself,  it doesn't leave any room for guessing games or unknowns.  By me being myself, it has helped others approach me in regards to my daughter as they see it is not only easy for me to talk about my daughter and her differences, but I am easy to talk to.  By me being myself, it has helped my other children be themselves around their friends when it comes to their sister...there is no hiding things or not talking about her....they tell you how it is.  I guess you can say, the gift of being yourself has helped my other two children too!

Each and every one of us are unique individuals for a reason.  How boring would this world be if we were all the same?!?  We need to be thankful for who we are and what we have and not wish for what others have.  I know it can be hard, but if we keep comparing ourselves to others and wishing for what we don't have, we will miss what we do have...right in front of us.

Here are some quotes for today....

To be yourself in a world that is constantly trying make you something else is the Greatest Accomplishment- Ralph Waldo Emerson

Be yourself; everyone else is already taken- Oscar Wilde

Your time is limited.  Don't waste it living someone else's life- Steve Jobs

Always be a first rate version of yourself, instead of a second rate version of someone else- Judy Garland


Monday, September 24, 2012

Getting Over Fear

Today's gift is getting over fear.

Unlike most children, my daughter does not like to ride a bicycle.  She never has.  I have a picture of her before Rett Syndrome entered our lives of her on her tricycle screaming!  However, if you are on a bike and you have her in a trailer sitting behind you....ride away...she loves it.  It is as if you are her own pedicab driver!  Who doesn't like being "driven" around?

For years in physical therapy sessions they have tried getting my daughter on an adaptive bike for children with special needs.  Guess what....she still has had no interest and does not like them.  Often, after she has tried riding on the bicycle, she will go into an unpleasant situation, leading to a behavior.   Why...because we pushed her to do something she did not want to do.  Because of this, I have not insisted on keeping it up.  I want her happy, not mad.

On the other hand, I know she would probably really like riding a bike...just like her peers.  As promised, I will not give up on her.  However, there is a fine line to walk with her and I know when I am near her "tipping" point.  And it is more than her "tipping" point,  it is her sense of fear....fear of the unknown.  Her body doesn't "know" what it is like to pedal and this scares her.   And at the same time, she has to unlock her hands from the stereotypical handwringing motion so many Rett girls possess to hold onto the handle bars.

Today, at physical therapy, the question of riding a bike came up.  Immediately my head flooded with negative thoughts, as this never has ended happily in therapy.  But then being in a new therapy center, I said...why not, let's go for it.  So we did!  My daughter was a little hesitant at first, but the therapists are incredible about getting her "into" the moment with the most positive words of encouragement and hope.  Guess what....she rode the bike around the center THREE times....and she pedaled....with a smile three times....100% herself!!!! I just want to clarify, she didn't pedal around the center three times herself...she pedaled three times total 100% herself in the three times she went around the center.  Baby steps....perspective....no matter how you look at it....she pedaled...BY HERSELF!!!   Can you say proud Mama???

Wow....she overcame her fear, by the excitement and encouraging words the therapists (and me) gave to her,  as we believe in her!  I don't know if I would say she enjoyed it 100%, but the fact she was holding onto the handles and at times we not only got a smile, but giggles...I would say she wasn't hating it!

There are many things in life in which we fear something and we have to think...is this fear holding us back from enjoying something in life.  If we keep introducing it slowly into our lives, eventually, the fear will go away as we get used to what was making us uneasy.  I hope this is the case for my daughter as we continue to try and get her on the bicycle in therapy.   I would love for her to be able to not only ride around the neighborhood with her brother and sister on her bike, but also her peers.  Until this day comes, I will continue to encourage her in therapy and not give up on her, but help her overcome this fear.

Here are some quotes for today....

A mind focused on doubt and fear cannot focus on the journey to victory- Mike Jones

The only thing we have to fear, is fear itself- Franklin D. Roosevelt

Thinking will not overcome fear but action will- W. Clement Stone

Fear is only as deep as the mind allows- Japanese Proverb

Sunday, September 23, 2012

The Message

Today's gift is the message.

I would not be where I am personally and physically if it were not for my daughter who lives with Rett Syndrome. I feel after spending the weekend with my fellow Board Members of Girl Power 2 Cure, I need to share the message....the message of my passion for my daughter on this Rett journey.

As I mentioned in yesterday's post I promised my daughter when she was diagnosed I would never give up on her. In trying to make her life better and the best it can while living with Rett Syndrome (this is my passion), I am not only making my life better, but also others. Others who know my daughter or girls like her and others who do not....do not know her or have even heard of Rett Syndrome.

Girl Power 2 Cure is an incredible organization and I want to share my passion of this organization with you. Of course, I am involved with them because of my daughter....this is a given, but being in a conference room talking about the "bigger" picture you realize what an amazing opportunity Girl Power 2 Cure is for all girls...Rett Syndrome or no Rett Syndrome.

Girl Power 2 Cure offers family support to families when their child is diagnosed with Rett Syndrome and the families feel helpless, hopeless and alone. The support comes from other mothers who have also walked in your shoes. Girl Power 2 Cure helps you plan events to raise awareness AND funds for research, as research is the ultimate way to a cure. But Girl Power 2 Cure is much bigger than this....just listen to yourself say the name out loud. Go ahead, say it now....Girl...Power...2...Cure.

The word "girl" is not only talking about the girls with Rett Syndrome as they need support...they need hope...they need a voice...to help them change the world. The word "girl" also means the "typical" girls in the world...their mother, their sisters, their grandmothers, their aunts, their cousins, their friends, their peers, the girls they don't know...the possibilities for these other "girls" is endless. Together...Rett Girls and Non Rett Girls are going to come together to cure Rett Syndrome.

However, what the Non Rett Girls are doing by joining our mission is more than helping to find a cure. They are first and foremost believing in the girls who live daily with Rett Syndrome. They are doing what comes naturally in life to us all, they are forming friendships. Everyone needs a friend to walk through life with, but girls who are suffering, girls who need support, girls who need help, girls who need a voice...they definitely need a friend. They need a friend who can provide help, give support (support on a friendship level), and who can help be their voice until the day comes when they can speak for themselves.

The Non Rett Girls are teaching the world about the Rett Girls and how they are the same, but Rett Girls have been given different daily challenges to live with from mild to severe. They will become understanding, compassionate, and patient young ladies and women later in life due to their work with a friend with Rett Syndrome. They will not take life for granted, but truly learn to appreciate every thing they can do...for themselves. In today's world, you don't see these qualities in our youth all the time. We are a society fixed on going and doing and while we are going and doing, we are attached to our phones, iPods, iPads and the level of daily interaction between each other has been lost to texting.

If I didn't have a daughter with Rett Syndrome, and I found out about an organization like Girl Power 2 Cure, where my daughters could be a part of a movement to help girls who are suffering, I would jump on the opportunity. I would jump on it...first, because I always teach my children what it means to be appreciative. I never want them to not appreciate anything they have or can do. The best way for them to learn is to show them....physically...someone else whose life isn't as easy as theirs.

Second, I want to teach my children from a young age about giving...giving their time to help someone else....giving their money to help someone else...giving their support to help someone else. Teaching philanthropy at a young age helps shape our children for the future. Life isn't about ourselves and being selfish, it's about helping one another.

Thirdly, how incredible would it be for my children to be part of an organization who helped be part of a bigger mission to cure a disease? Just writing this gives me goosebumps. Goosebumps because it is going to happen...a cure. Rett Syndrome research has come a LONG way in a SHORT amount of time. The gene which causes Rett was found in 1999....they REVERSED Rett in mice in 2007....in 2012 they found bone marrow transplants show VERY promising results....the question is no longer will there be a cure, it is now when will there be a cure.

I hope after reading this post you can not only hear my passion for my daughter and Girl Power 2 Cure, but feel it. Girl Power 2 Cure is about making a difference....a difference in the life of a girl suffering from Rett Syndrome and a difference in the life of a girl who is helping the girls who are suffering.

Instead of quotes for today's post, I would like you to go to www.girlpower2cure.org and learn about Rett Syndrome, learn about Girl Power 2 Cure, learn about the girls who are living with Rett Syndrome. There is a place to click which reads, "Meet the Girls"...go ahead meet them. I know you will love them and I know they will be honored to share their story with you. Just like two typical girls are not alike, two Rett Girls are not alike.

Saturday, September 22, 2012

Opportunity

Today's gift is opportunity.

While I am not with my daughter today, it is because of my daughter why I am here....at a Board Meeting for Girl Power 2 Cure.   If my daughter did not have Rett Syndrome, I don't know if I would ever have been introduced to this syndrome OR if I would have ever been introduced to Girl Power 2 Cure.  However, she does have Rett Syndrome and Girl Power 2 Cure is a big part of our life.

I have always loved volunteering for different service organizations and always knew this would be a part of my life....giving back.  I just never realized the organization I would be volunteering my time for would be promoting a disorder my daughter lives with.   Having a true passion to the cause you are promoting changes the whole picture, especially when the passion is your child.

All day I was in a conference room with 10 other dedicated people who want to CURE Rett Syndrome too!  Some have a daughter with Rett Syndrome and others do not; however this doesn't change our ultimate goal.  It is because of my daughter I have been introduced to these amazing people and why I have been given this opportunity to make a difference.

My daughter is making a difference in this world by teaching everyone she comes in contact with about Rett Syndrome and how she may have different challenges to face everyday, but she is still an 11 year old girl....with the same likes as most of her peers.  She has taught me about making a difference and through her I have learned how to share her story....our story....with others.

I (we) promised my daughter when she was diagnosed 6 years ago we would NEVER give up on her. My passion for her, is for her to be able to live the most typical life she can with Rett Syndrome.  I want her to experience life like her peers.  My passion parallels the mission of Girl Power 2 Cure..."...by harnessing the spirit of girls to help fellow girls who are suffering".   I am honored and excited to be given an opportunity to not only help my daughter, but also to help typical girls...peers of my daughter....to make a difference in the lives of girls who are suffering.  Because of HER, I want to Help End Rett.

Here are two quotes for today....

The ladder of success is best climbed by stepping on the rungs of opportunity- Ayn Rand

In the middle of difficulty comes opportunity- Albert Einstein



Friday, September 21, 2012

Her Kisses

Today's gift is her kisses.

I love giving my children hugs and kisses multiple times a day. I love telling my children I love them and how proud I am of them throughout the day. I want them to know I am always thinking about them and care for them beyond words.

Whenever I go away on a trip and I am away from them I feel like a piece of me is missing. As I type this post I am sitting on a plane headed to my annual "in person" Girl Power 2 Cure Board Meeting. I hate to fly....we will just put this out there right now. So me being away from my kids makes me more anxious due to the fact I don't like flying on planes. I love getting places fast, but just don't care for flying....but of course I do it anyway.

This morning after I got the kids dressed for school and made sure they looked extra cute today, as it is picture day for the girls, I just cuddled with them a little bit more. It was like my daughter with special needs knew I needed this extra bit of comfort too. She just looked at me so intently, we locked eyes and then she pursed her lips and gave me a big kiss. It was as if she wanted to tell me to relax and everything is going to be ok.

Of course I hugged and kissed my other two extra too and even got a couple of games of Mario Kart Wii in with my son before his ride came to pick him up for preschool.

It's funny how kids sense your feelings sometimes without you even mentioning them. My kids knew I needed extra love this morning, my son knew I needed to take my mind off flying so we played Wii, my middle daughter made me laugh with her hide and seek games she plays with her sister, and my daughter with special needs knew I needed those extra kisses.

Here are some quotes for today...

Children are a great comfort in your old age-and they help you reach it faster too- Lionel Kauffman

No one else will ever know the strength of my love for you. After all, you're the only one who knows what my heart sounds like from the inside- Author Unknown

Motherhood: All love begins and ends there- Robert Browning



Thursday, September 20, 2012

Her Climb

Today's gift is her climb.

Her climb...to overcome all her daily challenges.  Her climb to catch up with her peers.  Her climb to be the best she can be.

This morning was a PT morning (physical therapy for those who are not familiar with my lingo...I wish it was personal training as I could use some right about now!), which means we have extra time in the morning.   My daughter slept in and I got her ready leisurely allowing us to have a relaxing morning. Many people start their day with a cup of coffee or tea, the newspaper, watching the news, or whatever is part of their morning ritual.  Well, for my daughter, she starts her day (and often ends it too) watching Hannah Montana.  We watch DVD's of all the seasons and we also watch her movie, Hannah Montana, where she tells her story, how Miley is also Hannah.

Today, we had time to pick up where we stopped watching the Hannah Montana movie the other day, which happened to be right at the part where Brody finds out Miley is also Hannah.  I know many people have different opinions of Hannah Montana and Miley Cyrus, I get this. However, in our house she has become a part of my daughter's every day life.....I'm not kidding. Everyone in my house has pretty much every episode from Season One (our favorite) memorized!  Even my daughter has her favorite episodes and lines and when she sees them or you say them she starts laughing.  There is something about Hannah Montana/Miley Cyrus my daughter just loves and finds comfort in her...her shows....her music.   It is just like when your child loves Elmo, Dora or The Wiggles....they make your child happy, they love the music and we want nothing but happiness for our children....especially when they face uphill battles daily.

When I started my first blog, it was after we saw the Hannah Montana movie.  I named my blog, Her Climb, after the song The Climb, from her movie.  The words to this song were too perfect for my daughter and how she fights every day to be a "typical" 11 year old.  And let me remind you, being a tween girl is hard whether you have special needs or not.

We listened to The Climb this morning and then ran out the door to physical therapy.   There really could not have been a better song for us to start our day together than this one.   Here are the words....

The struggles I'm facing
The chances I'm taking
Sometimes might knock me down, but 
No, I'm not breaking 
I may not know it, but 
These are the moments that 
I'm gonna remember most
I've just gotta keep goin', and 
I gotta be strong
Just keep pushing on

There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be an uphill battle
Sometimes I'm gonna have to lose
Ain't about how fast I get there
Ain't about what's waitin' on the other side
It's the climb

My daughter's daily challenges start every morning with her not being able to sleep sometimes...and poor sleep habits can lead to other issues throughout the day.  She has trouble getting dressed by herself, she can not wash herself or brush her teeth, she can not brush her hair or style it, she can not prepare her meals or feed herself without assistance, she can not walk up or down the stairs alone without assistance....she requires help with all aspects of her day.  She WANTS to do everything by herself, but it takes time for her to learn the skills needed to do them alone.   I don't know if she will ever be able to do the things I've listed above "alone", but having her be able to do them with minimal assistance is our goal.

Everything she does is a mountain she is trying to climb.  For example the latest climb has been, getting her strength back from her tendon lengthening surgery she had on September 29th, 2011.  I never would have thought it would take her 8 months to start walking again....and this is walking with lots of assistance.  I know it was so frustrating for her, as she was my energizer bunny who never stopped and ran around the house and jumped on furniture...yes she loved to do this!  To see her determination to get her strength back was inspiring to me.  She tried and tried and when her legs would start to give up, she would sit briefly and then try again.  Physical therapy was not fun at times, but you know what they say....no pain, no gain.  She needed to be stretched and I am sure at times this was painful, but we did not want to lose the range she just gained from surgery.

When she finished school in June, we decided to go hard core with physical therapy over the summer, in hopes she would be able to walk unassisted back into school in the fall and would not need her cruiser during the day.  Over the summer she worked extra hard to get her strength back and I am very proud to say, she is not only walking around school, but running and skipping!

When we left therapy this morning, the program coordinator who does not provide clinical care for the patients, said it is amazing to see the progress she has made since she started therapy with them in May. She said she is a different child...the one who walked in needing to hold my hand and would bend at the waist as she was unsure, is now not only walking in on her own, but when her therapist is getting the next station ready, my daughter will run in the opposite direction!  Noticing her strength is back not only is apparent at therapy, but at school too.  Teachers, her peers and other parents are commenting on how, "she is walking again!"...something they too missed seeing her be able to do.

Her walking is just one example of her climbing a mountain.  Everyday we are working on new skills with her to get her to be the best she can be with Rett Syndrome.  Whether it is talking, reading, science, social studies, activities of daily living (like feeding or dressing), walking...you name it...it is hard for her and is a challenge.  Something so "easy" we take for granted EVERY DAY is not EASY for many people, but HARD WORK.  Until you live with someone who faces these challenges daily, you don't think about them...you just do them...it becomes second nature.

The latest mountain my daughter climbed was gaining her strength back to walk again.  She did it!  Sometimes it did knock her down, but she didn't break.  She kept goin' on....she was strong...and just kept pushing on.  It was an uphill battle for her.  It definitely wasn't about how fast she was going to get there and it wasn't about what was waiting on the other side....it was the climb.  The climb....the courage....the determination...the strength to overcome this struggle she was facing.   And when she got to the top....guess what....the view was great!

Instead of quotes tonight, please read the words to the song again.  The first time I heard the words to this song, I immediately thought of my daughter.  And every time I hear it, I think of every mountain she has climbed and how yes....these are the moments I do remember most.





Wednesday, September 19, 2012

Counting

Today's gift is counting.

Do you remember the first time your child started counting?  They started with 1..2..3 and then added 4...5....and then 6...7...8...9 and 10.  And of course took it from there.  This is how most stories go...right?

My story with my daughter who has Rett Syndrome took a different path.  My daughter didn't start counting....out loud....until she was nine.  Not nine months.....nine years old.  We worked with her at school and at home and counted everywhere we went.  We made it a game and she liked it.

I can tell you we have 5 steps to get up to our front porch....we have 4 steps to get into the house from the garage....we have 5 steps to get to our patio from our back porch and we have 15 steps to get upstairs....and of course if you climbed stairs to go up....you have the same number to come back down.

Everyday we count with her....and she counts with us now!  Repetition, repetition, repetition....it works...trust me!  My daughter wants to talk to us so badly, so she listens intently to everything we say. She is listening and taking it all in with hopes she will be able to say the same words.  You know what they say....practice makes perfect.  Well, in this case I say repetition equals rewards!

What I love about my daughter counting now, is she will finish my sentences for me, if numbers are involved.  For instance, when I am talking to her brother and he is ignoring me I will start to count, in hopes it will get his attention as he knows he will get in trouble if I get to three.  So I will start counting...1...and my daughter will say 2....3....and keep going to 10!  I crack up every time!  I love it!  I love how she is using counting with a purpose...and of course a giggle!

Every morning when we walk downstairs in the morning, I say here we go...1...and then in order for us to get to the next step she has to count.  She can not count past ten and this doesn't bother me as I never thought I would hear her count TO ten!  When we get to eleven, I say it and then the twelve through fifteen I have her make the "t" sound she can make along with the numbers I know she can say.  Who knows maybe in another 2-3 years she will be counting even higher out loud!

In the summer when we are at the pool, she loves telling anyone and everyone to GO when they are going to jump in....so why not include counting here too.  She has to count to three for them and then say GO!  Think about it....in this example she is saying FOUR words in a row....one, two, three, go!  Every place we can use words we know she can say, we do...over and over and over again as to help her keep these words, but more importantly for her to know we are reacting to her speak to us. We want to hear her voice!

Ask her what grade she is in and she will tell you.  Ask her how old she is and she will tell you.  Ask her how many brothers and sisters she has and she will tell you.  She cooks weekly at school using numbers while measuring her ingredients.  I didn't realize how often we use numbers until I had a child who could not say them.  When you are working so intently with someone to get them to speak, your whole perspective of language changes.  You realize what words you use a lot...you realize how you talk...you realize they are listening to everything you say and one day they will repeat a word they have been hearing over and over and over again.

Tonight when we were walking upstairs to take a bath, as soon as her foot hit the first step she started counting...ON HER OWN!  And when she hit 10...she kept making sounds like she was trying so hard to say 11...12...13...14...and 15!  I was so proud of her!  She works so hard at EVERYTHING she does...daily.  She makes me proud with all her accomplishments and I know she is equally as proud in herself.   There is nothing like hearing your "non-verbal" child counting.  As I said, repetition equals reward and here the reward of speech is priceless!

Here are two quotes for today...

Whatever we plant in our subconscious mind and nourish with repetition and emotion will one day become a reality- Earl Nightingale

Never give up on a dream just because of the time it will take to accomplish it.  The time will pass anyway- Earl Nightingale

While they were saying among themselves it cannot be done, it was done- Helen Keller








Tuesday, September 18, 2012

Typical Sibling Interaction

Today's gift is typical sibling interaction.

As I just wrote the words above, I am laughing at myself, as I am in shock even thinking this is my gift today. The interaction between them is not the warm and fuzzy type, but the yelling, driving the other one crazy kind of interaction....which ultimately drives ME crazy! But this is "typical" behavior of "typical" siblings!

While it drives me crazy, it is also funny...funny to watch my oldest push the buttons of her siblings, just like they do to one another. It is equally funny to see them react to her versus each other. They do give her more time to "bother" them before they really start telling her to stop or the whining starts coming my way. I try to tell them "to work it out" amongst themselves when they want me to intervene. I am here if they really need me, but 99% of the time they can work it out between each other.

They must know I have book club tonight, as they ALL decided to act wild and push me over the edge. Or it is this weather we are having...whatever the case, I am counting down the hours till book club.

It is funny how they "must know" it is my one night out, as it is also the one day they all need me....at the same exact moment. It is the one night they all have to get on each other's nerves. It is the one night they have to do everything in the book to make me want to fast forward the clocks!

Through all the "craziness" the gift from my daughter wanting to join in and make mommy crazy too is incredible to see. Especially since she laughs the whole time. She knows she is being funny....she knows she can get away with it....she knows it really does make me happy...deep down (lol)! I love when she can be as typical as she can and I love it when I'm in the moment....and for the moment my family looks "typical" too.

The quotes I leave you with tonight, are more funny thoughts (from someeecard...the website is called someeecards), than quotes....

Why do they want dinner every single night?

I'll love you forever, like you for always, but if you continue to scream like that I'm going to pretend I don't know you.

Shhh, Mommy's on the phone. Let's be really quiet and behave until she is done. Said no child ever.

And lastly, not from someeecards.....

They know me in a way no one ever has; They open me to things I never knew existed. They drive me to insanity and push me to my depths. They are the beat of my heart, the pulse of my veins, and the energy in my soul. They are my kids- Author Unnown



Monday, September 17, 2012

Her Willingness to Learn

Today's gift is her willingness to learn.

I love knowing my daughter loves to learn!  Being in school with her friends and learning the same material they are, I truly feel makes her want to learn.  They are her motivator.

The school work my daughter is doing makes me so proud.  I can honestly say I never thought she would be able to take spelling tests, to learn to read, to learn her continents, to learn science and to learn social studies.  She loves science....I have no idea where she got this from!

Today she brought home 3 different folders for her homework.  I was amazed at what was in them!  The questions I had to help her study were...how many regions are there in Virginia (5) and name them all (she had to match their name by placing them in the correct place on a map).....the bodies of water in Virginia (4 rivers, 1 ocean and 1 bay)....and match them correctly on the map....and how many States border Virginia (5) and name them....by matching them correctly on the map.

I am beyond proud of her for learning about the same material her peers are, even if it is not as detailed as their work. She was so excited to do her homework with me this afternoon and I loved sharing this time with her too.

We never give up on her and we never stop believing she can do it...."it" being anything she puts her mind to.  The support she gets at home is carried over at school as well, so no matter who she is with, the common thread is believing in her.  She may not be doing exactly like her peers, as far as school work is concerned, and the work may need to be modified for her, but nonetheless she is doing work like them and it is all we can ask of her!

Here are some quotes for today....

Tell me and I forget.  Teach me and I remember.  Involve me and I learn- Benjamin Franklin

Optimism is the faith that leads to achievement, nothing can be done without hope and confidence- Helen Keller

My heart is singing for joy this morning!  A miracle has happened!  The light of understanding has shone upon my little pupil's mind, and behold, all things are changed! - Anne Sullivan

Sunday, September 16, 2012

Down Time

Today's gift is down time.

After my eventful evening last night, I was extremely thankful today for having lots of down time.  Everyone in the house (including my mother!!!), slept in until 7:30...this is a first...for all of us!  This in and of itself was a gift to me.  But having a very low key day was a bonus.  I never know what the day is going to hold for my daughter, but she must have known mommy needed today to be rather calm and stress free.  I can not thank her enough for this!

My mom was here to help me all day and we had a relaxing day.  The girls were pretty upset after last night, so it was nice to spend some time hugging them and letting them know I was okay.  It was a scary time for all of us.  While I was comforting my own children, it was nice having my own mother here too to comfort me.  We have shared similar situations with me and my allergies one too many times in the past.

My daughter has brought many special people into our lives and we are one lucky family to have some amazing friends.  A friend of my daughter's and her family surprised us with a delicious dinner tonight...even with a nice bottle of wine.  While I was tempted....I will have to wait on a glass, my body isn't 100% back just yet.  I am beyond thankful for your thoughtfulness!

My phone was either buzzing with texts, ringing or receiving lots of emails with friends checking in on me....I am thankful for everyone who was concerned.

My girls were amazing and they were very good to me today.  I always enjoy down time with them as we go, go, go so much during the week, but today it was particularly special and just what the doctor ordered.

Here are two quotes for today....

Life moves pretty fast, if you don't stop and look around once in a while you could miss it- Unknown

Besides the noble art of getting things done, there is a nobler art of leaving things undone- Lin Yutang






Saturday, September 15, 2012

Never a Dull Moment

Today's gift is never a dull moment.

There are many days when my daughter with special needs will do something and the timing is all off. It can be right when we are walking out the door to go somewhere, it can be right when we are going to bed, it can be in the middle of dinner....any time....any place. It keeps me on my toes for sure and always teaches me how to stay calm in a stressful situation. And let me tell you....it has paid off.



Tonight was MY night to have my timing all off ending our evening on anything, but a dull moment. I took my mother-in-law and my two daughters to dinner for some "girl time" as my husband took our son away on his first boys weekend. I have a severe nut allergy to tree nuts, so I am always questioning food I order. Tonight at a restaurant we frequent monthly, I ordered a salad I usually get. Well, tonight they must have been creative or something as after one bite of the crouton, my mouth started to get "a certain funky feeling". Great, perfect timing...is what came to my mind.



I will not bore you with the chain of events, just trust me when I say it was "nuts"! I went to the emergency room via ambulance. I am surprised I can still see straight given the amount of Benedryl they gave me in my IV. My awesome friend and neighbor jumped in and helped my mother-in-law with the girls until my mom could get to my house. I owe him big time!



I remained calm through the whole "event", and so did everyone else. Especially my 7 year old...I had mentioned a couple of times she was amazing and very mature for her age...and she blew everyone away tonight with showing them how things are done and keeping the peace in the house.



I was so concerned for my kids during this time....seeing their mom go off in ambulance probably was not how they intended to end our fun evening together. I felt helpless, but trusted my neighbor in this stressful situation to help my mother-in-law and daughters....and knowing my parents were in the car on their way down helped too! I give thanks to all the "not at the right time" things my daughter has done to help me for future stressful situations. It truly is never a dull moment in our house...but it keeps us on our toes!



Due to the fact my eyes are rolling back as I type there will not be any quotes for today. I'm off to dreamland!





Friday, September 14, 2012

Girl Time

Today's gift is girl time...as in time with your girlfriends.

I love spending time with my girlfriends, whether it is talking on the phone with them, meeting them for a cup of coffee in the morning, lunch in the afternoon or a glass of wine in the evening. Everyone needs a friend...we all need one person who we can be silly with, cry to, tell our secrets or fears, or just sit next to and no words need to be exchanged, but knowing they are there is all you need. I have certain girlfriends I turn to depending on what I need at a particular moment. I am truly blessed I have some amazing friends in my life, I truly am.

You know who else has amazing friends? My daughter with special needs. As I am typing this blog right now I am listening to one of her friend's sing to her in bed! I'm speechless! My daughter is having her FIRST slumber party tonight to celebrate her birthday which was over Labor Day weekend. It is one of those milestones I have wanted for her for so long, but one with fear too. For instance, if she misses her window to go to bed, then she will not go to bed for a long time...and guess what...I think we missed her window tonight. When she was at the point where I should have been putting her to bed, her girlfriends were in her room having "girl time" and I did not want to interrupt. She was having the best time, being "typical" and I was willing to take my chances for her to have this moment.

The "girl talk" they talk about too is....wow...where have I been? Luckily, I have a daughter three years younger than my oldest who brought us up in our music and television shows years ago, otherwise I think we would be still be in the Wiggles phase. So I know she is listening to what her peers are listening to when it comes to music. However, there are some areas which haven't made it to the forefront yet....like makeup, boys and some "older" conversation. Tonight the girls were all about doing each others makeup, hair and nails. We have done nails and do nails often, but makeup....not yet. I was really excited to see them do my daughters makeup and watch her do a "typical" fun activity her peers enjoy doing at slumber parties. I loved seeing them wanting to be a part of her first slumber party experience and making it all about her.

Then the boy talk started...much different than second grade boy talk! Oh, how easily we forget what it is like to be in 4th grade. It is so cute to listen to them talk about the boys who they think are cute and why.

While I LOVE the fact my daughter is doing something so typical tonight, a piece of me is also a little sad. I wish she could be a part of these "girl times" like her typical peers. I wish she could tell them about the boys she thinks are cute and why, I wish she could do their makeup instead of them doing hers, I wish she was downstairs having a "typical" sleepover, instead of being in her bed still trying to fall asleep....because I did miss her window. She is so tired, but wants to be doing what her friends are doing....she wants to be like them so badly. And I want her to be too! I just don't want her to not be in a good mood for the next two days because of one bad night.

But while she is not asleep yet, she has her one friend who doesn't want to leave her side. She is putting her back into bed when she gets up, she is singing to her, she is talking to her, she is laying next to her, she is there for her. She is having "girl time", it is just different...but you know what...I'll take it!

Two of her five friends are asleep and three are still awake....so she has outlasted two of her peers! While I wish I was asleep right now myself, this is what slumber parties are all about...the bonding...the girl talks...the staying up late...the girl time...and she is doing all of this too! Funny thing is, I see why my parents weren't the biggest fans of slumber parties....due to the fact they didn't get any sleep! I am beginning to get a taste of this tonight!

As I end this post, two girls who were alseep moved upstairs to go to bed and are now in her room with her and one is sleeping in her bed. I hope she follows their lead and drifts off to dreamland very soon. I have to say, I think she got a taste of a "typical" slumber party tonight....from makeup and nails....to boy talk...to girl time....to staying up much later than her bedtime....and while I am one tired Mama....I am also one proud Mama too. Proud of my daughter and so proud of her friends.

Here is one quote for today,

The language of friendship is not words, but meanings - Henry David Thoreau

Thursday, September 13, 2012

Knowing when.....to say when

Today's gift is knowing when....to say when.

My daughter does it best...when she wants to stop and relax she will do so wherever and whenever.  When she wants to rest, she rests.  When she is sick and wants to nap, she naps.  Her body is telling her  to slow down and she listens.   Her body knows when enough is enough.

I have been battling a cough for more than 10 days.  My husband and family can tell you my cough sounds like it is getting worse, rather than better.  My friends can tell you the same thing.  But I keep plugging along...I am doing fine...I have so much to do...I have to do x, y and z.   And before you know it, it is close to midnight and I am still up, yet I want to go to bed so badly!  My body is telling me  to slow down and get some rest and I am NOT listening.

So tonight, I am going to do what my daughter does....I am going to listen to my body and go to bed.

Here is one quote for today....

You can't soar with the eagles, if you hoot with the owls- Coach from Dematha HS

Wednesday, September 12, 2012

Love Does

Today's gift is love does.

You may read the gift and think, love does, what is love does? Love does doesn't make sense. Are you sure about this? Love does makes complete sense.

Love does is what you do because you know it is the right thing.  Love does is how you make someone feel.  Love does is what brings certain people into your life.  Love does is how you deal with challenges. Love does is what God would want you to do.

Today my husband and I celebrate 14 years of being married. As I write these two numbers...1...and 4.... I can't believe 14 years have gone by already, while at the same time I'm thinking of all the things we have accomplished together, all the places we have visited together, all the memories we have created together, all the ups and all the downs, all the twists and all the turns...and what love does for us every day.

14 years ago we committed our love to each other and 11 years ago we committed our love to our first born, our daughter with special needs. Through our journey with her these last 11 years we have seen how love does....how it does work, how it does make you feel, how it does help you when you feel alone, how it does bring people into your life for a reason and how it does change you.

When my daughter was diagnosed with Rett Syndrome we felt alone, scared, mad, frustrated, and loved. What love does is it helped us come together at a time when we were at the bottom of the barrel. We couldn't believe this was happening to us and we certainly did not know why (and still do not have the answer).  It was our love...our love for each other and our love for her which helped us climb out of this deep, dark hole we were in. At this point we knew our life for our family, our life for our daughter wasn't going to be what WE had planned, and it certainly wasn't going to be perfect.  At the time of her diagnosis, we were married for 8 years, she was 5 years old, her sister just turned two and it was the day before Thanksgiving. Yes, we had a heartfelt doctor (there is a lot of sarcasm here!) at this time who felt the need to NOT wait until the Monday after Thanksgiving to deliver the news to us...the news which wasn't going to change in 5 days...the news which would change our lives forever.

Looking back now on "D Day", what we call the day we received our daughter's diagnosis of Rett Syndrome, love does was there with us....love does was the fact it was the day before Thanksgiving and while our world was just turned upside down, we still had so much to be thankful for.  Love does was the fact a week later we found out I was expecting our third child, a son, who has completed our family in more ways than one!  Love does shined through to show us we must move ahead and support each other no matter what comes our way.

Did you know there is a book called Love Does, by Bob Goff?  I am in my last chapter and it is one of the best books I have read.  Take the time to read it and I think your life will be changed too and you will begin to see how Love Does.  His books is overflowing with life and love lessons, you will not only enjoy them, but learn from them.

My daughter's diagnosis of Rett Syndrome made us stronger than we realize....stronger as individuals, but also stronger as a team.  Love did some amazing work when He trusted us with our daughter and love does still work in mysterious ways.

Tonight, on this special day, I would not only like to thank my daughter for showing us how love does by being herself and teaching us and others around her, but also my husband.  He is my best friend, he is my strength, he is my partner, he is my laughter, he is my everything....even when I drive him crazy.  I am not perfect and I have my faults (some....ok many)....but he loves me anyway.  He loves me with all my issues....because love does.

Here are some quotes for today....

...we need to stop plotting the course and instead just land the plane on our plans to make a difference by getting to the "do" part of faith- Bob Goff, Love Does

Living a life fully engaged and full of whimsy and the kind of things that love does is something most people plan to do, but along the way they just kind of forgot- Bob Goff, Love Does

You may not end up where you thought you'd be, but you'll end up right where you're meant to be- Author Unknown

Life has taught us that love does not consist in gazing at each other, but looking outward together in the same direction- Antoine de Saint-Exupery








Tuesday, September 11, 2012

Courage

Today's gift is courage.

This morning I went to a memorial service for a friend who helped me plan the catering portion of our last three big fundraisers for Rett Syndrome.  In the last three years, we not only talked about food and beverages or placement of tables, but about our families, our children and we learned about each other.   She was a genuine person, one you will never forget, one who is honest and caring.

On March 7th she was diagnosed with a brain tumor and she lost her fight with cancer last Friday (September 7th).  As I was listening to all the amazing and uplifting stories today about her courage during the last 7 months, I realized this was my gift today.

What is courage?  Courage is the quality of mind or spirit that enables a person to face difficulty, danger, pain, etc., without fear.  Having a daughter with special needs has made me have courage and I honestly do not know if I would have it, if it wasn't for her.  Weekly, monthly, yearly I have difficult situations and challenges I have to face without fear....to be there for my daughter and to be there for my other two children.  The strength I have gained from being a "special needs mom" has allowed me to become who I am today....it has allowed me to speak from the heart....it has allowed me to advocate not only for my own daughter, but others living with Rett Syndrome...it has allowed me to share my story with others.

Don't think I am never afraid, I do feel fearful sometimes, like when I think about the future for instance (thought about it today in the memorial service).  What if something happened to me?  Or my husband? or both of us?  How will this affect our family?  Will my daughter understand?  Without a doubt I still have fears.  But when I am faced with a difficult situation or when my daughter is in pain I face those challenges without fear.....for her.  I want to be strong for her, so she knows everything is going to be okay.  I do not want her to think something is wrong or to show my fear to her as she reads our body language extremely well.  And when your child is already anxious, the last thing they need is more fear.

I wish daily my daughter didn't have Rett Syndrome and I pray daily there is a cure or treatment...in her lifetime.  But through this "Rett Adventure" I have learned so much about life and I will be forever grateful for all the daily gifts she is giving to me.  She has shown me how to be strong and move on.  She has taught me to keep my head high and to not look back.  She has shown me how to be brave, when I want to cry.  With all she has given to me, I am better prepared to be there by her side when she faces a difficult situation, when she is in pain or when she is sick....without fear.  There is someone else who would love to do my worrying for me and I will let them, "Trust in the Lord with all your heart; do not depend on your own understanding.  Seek his will in all you do, and he will show you which path to take" Proverbs 3:5-6

Here are some quotes for today....

Having courage does not mean that we are unafraid.  Having courage and showing courage mean we face our fears.  We are able to say, "I have fallen, but I will get up"- Maya Angelou

Courage is not having the strength to go on, its going on when you don't have the strength- Author Unknown

It takes courage to grow up and become who you really are- e.e. cummings





Monday, September 10, 2012

Change

Today's gift is change.

I love being back on our school routine.....and the kids love it too.  I love having some "quiet" time to myself during the day....whether I am preparing dinner, doing laundry, exercising, grocery shopping, driving in my car....whatever it is I am doing having some time with no interruptions is wonderful.  All three kids in school, five days a week, between two schools....the girls go to one and my son is in his last year of preschool so he only goes for three hours a day unless he does extend a day.

For the past seven years one of my three children attended this wonderful preschool in our town.  I love everything about the school, except the distance it is from my house.  However, year after year, you become more involved in the school family and it gets harder and harder to leave.  Over the last seven years I spent one hour of my "three hour" preschool window driving in my car....to school (15 minutes)....back home or near my home (15 minutes)....back to school (15 minutes)....and back home (15 minutes).  It never "hit" me until this summer when I was driving my son back and forth for his summer camp how much driving I do every day taking him to school.

My kids were very happy at this preschool and they made some wonderful friends, as did we.  The school was supportive of our family and this school was even home to my daughter with Rett Syndrome when she went to preschool in her early school years.  The staff was incredible and knew us...they knew our story...we felt welcome and we felt comfortable.  

I went back and forth...and back and forth...and back and forth as what to do for my son for preschool this year....his last year of preschool.  Should I just bite the bullet and stay one more year....heck what is 8 years after doing 7.....or should I make the switch and make something "easy" for myself once in my life?  It was a decision where I was constantly making my pros and cons list....and then second guessing myself.  My husband was supportive in whatever decision I finally made...I knew where he stood....but he was going to let me make the final call.

I decided I would make the switch and move him for his pre-k year of preschool.  It was a decision which was extremely hard for me to make, but one I knew in my heart was the right choice....for him and for our family.  There are not many things I can control in my life, but this was one I could....and I did.

He started his first full week today and he is happy as a clam!  He jumped right into his new school and didn't miss a beat.  I am so happy for him...happy he feels comfortable and walks right in, happy he is close to home (which means a VERY short drive!), and happy he can participate in after school programs (he could not do this at his old school due to the driving time and having to get his sisters from school).

If it hadn't been for my daughter with special needs, I don't think I would have changed his preschool and I would have just "sucked it up"for one more year.  She has taught me change is okay and sometimes a change is what we need.  I see how throughout her life we have made changes to her routines, therapies and schooling and they either have worked or didn't work....but when the change was what was needed it was apparent immediately.

The change to the new preschool for my son has been HUGE for me.  I don't feel rushed in the mornings or in the afternoons to get things done, I am more relaxed as I am not driving on the interstate every day any more, I am able to take my son to his tae kwon do lessons right after school so we don't have to fit one more thing into our weekends.....and it has only been 2 days!  I can't imagine how I will feel after one month!  Change can be scary...as there are a lot of unknowns, but it can also be the right decision.  I have no regrets and I know this change was meant to be.

Here are some quotes for today......

God grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference- Reinhold Niebuhr

Your desire to change must be greater than your desire to stay the same- Author Unknown

Change isn't bad.  It's how we react to and adapt to a change which discerns whether it affects our lives in a positive or negative way- Author Unknown

To exist is to change, to change is to mature, to mature is to go on creating oneself endlessly- Henri Bergson


Sunday, September 9, 2012

Determination

Today's gift is determination.

Today was a gorgeous day!  The morning air had a crisp feeling to it and you could tell fall is coming soon.  I love the fall season!  Our family went to church this morning and we had a wonderful morning thanking God for all our blessings.  Little did I know he would be giving me a gift through my daughter when I walked out of church this morning.

After the service, my husband and daughter with Rett Syndrome walked outside to wait, while I went to get our other two children out of their Sunday School classes....I think he really wanted to enjoy the beautiful day.  I went to get my son first, as I could see my middle daughter's class was still meeting.  When I got my son, he saw his dad and sister sitting outside and wanted to go with them....so he ran along.  I was still waiting for my other daughter's class to finish.   As soon as her class was done, she saw me and we walked out front to meet the rest of our family.

However, they were not sitting where I saw them last.  I assumed they had already starting walking to the car, so we proceeded to walk in the direction where we parked.  As we were walking my middle daughter, said, "there they are"...pointing to the direction of the new playground.  She started running over to them as she wanted to enjoy the fun too.

As I walking to meet them, I noticed my son was up in the top of the playground equipment and my daughter with Rett Syndrome was at the bottom of the rock wall trying to get up.   My husband was right there with her, guiding her and waiting to see if she could do it.  It was a challenge for her for sure....but she was determined to get up to the same level as her brother.  She didn't get frustrated, but kept trying.  When she figured out she was not going to be able to get to the top via the rock wall, she walked around to the other side to the tiered steps....and walked up herself....with dad right behind her.   She was determined to have the same fun her brother was having (and sister too) and wasn't going to give up.  She kept walking until she got to the very top....and she was so proud of herself....as were her brother and sister for her.

The only way down was to turn around and walk back to where she started or to go down the slide....what do you think she chose?  She chose the slide....however, she has never really been a slide lover.....she prefers swings to slides.  But today...she not only went down the slide....she went down the slide by herself!  Of course, I was right by her side....holding her hand all the way down, as I did not know what she was going to think of this experience.   She loved it!

I was so excited to see how determined she was today to want to join in the fun with her brother, but what impressed me the most, was the fact she didn't give up when she knew "plan A" wasn't going to work.  Instead, she went to "plan B" on her own.....and reached the top!

Here are some quotes for today....

The difference between the impossible and the possible lies in a man's determination- Tommy Lasorda

When the world says, "Give up", Hope whispers, "Try it one more time"- Author Unknown

Every accomplishment starts with the decision to try- Author Unknown




Saturday, September 8, 2012

Being a Soccer Mom

Today's gift is being a soccer mom.

Before I had children I envisioned myself driving a Volvo station wagon filled with kids to various after school activities....sports practices....dance lessons....music lessons...girl scouts and being their taxi service.  And if the week days weren't busy enough, the weekends would be just as full!  I wasn't too far off....I used to have a Volvo, now its a Yukon XL and I do shuttle my kids around between sports, dance lessons and girl scouts.  However, this is how I would describe my "taxi" service about two of my children during the week.  With my oldest, the typical weekday after school activities have been replaced with physical therapy, speech therapy and doctor appointments.

When she comes home from school she is wiped out.  Think about it, she works overtime in school as everything she does from walking, to trying to talk, to learning, to eating requires extra strength, coordination and motivation.  I do not blame her at the end of the day when she just wants to crash on the sofa and relax.....I would too!  Many days she can do this; however, to keep her strength up, to help her coordination and to keep her motivated she must also have the therapies to help her.  We were able to move her physical therapy to the mornings before school....which is better for her as she is a morning person when it comes to being pushed, however, it would be nice for her to not have to be pushed first thing in the morning before school even starts.  Due to the fact she is tired after school, I do not want to make her do anything she doesn't want to do, as this usually will backfire.  But I want her to have as many typical experiences as she can....but there is only so much time in the day...in the week...in the month.   Weekends are the best options for her when it comes to any extra-curriculars and I want to make sure she is going to enjoy them 100% instead of just signing her up to do "something".  

Two years ago a grandfather started a Saturday soccer group right by our home for children with special needs. We were beyond excited, as playing with a ball is one of her favorite things to do.  She and my husband made "soccer" their special time together every Saturday morning.   Last year we had to miss the soccer season due to her surgery and we didn't know if she would be ready for this season.   As we watched her getting stronger and stronger with her walking we knew she was going to be able to participate in her sport this fall.

This morning we loaded up the Yukon with chairs, soccer balls, water bottles, snacks, three kids (two who were playing soccer), two parents and headed to the soccer fields!  Both girls are playing soccer this fall and not only are they playing at the same fields, but their fields are next to each other....which means I can put my chair in the middle and watch each of them!  It was a beautiful late summer morning, with a perfect blue sky and a light breeze....I had my son sitting on my lap....coffee in my hand and I was the proud soccer mom watching both of her girls.   My oldest daughter was enjoying her one on one time with her dad playing one of her favorite sports and she was so happy to be back on the field.  Even before we left the house this morning in her uniform she was grinning from ear to ear as she knew where she was headed.  Her coach gave her a big hug and was excited she was back...in full force!  My middle daughter was running around practicing all her soccer drills and having the time of her life too.

At this moment, I was so thrilled to be able to enjoy a "typical" soccer mom experience....where a mom is able to watch two children play the same sport....on a field....with a team...in a uniform.  It doesn't matter to me the difference in their skill level of the same sport.  The only thing I ever want for my daughter with special needs is for her to be as "typical" as she can with Rett Syndrome.  Today, she was practicing soccer...with a team...on a field...in a uniform...listening to a coach give instructions.....it doesn't get any more "typical".....in fact....when I changed directions to watch my middle daughter....she was doing the exact same thing.

Here are some quotes for today....

Do not underestimate yourself by comparing yourself with others.  It's our differences that make us unique and beautiful- Robert Tew

Whether it is a 14 minute mile or a 7 minute mile....it is still a mile- Unknown

Everybody is a genius.  But if you judge a fish by its ability to climb a tree, it will live his whole life believing that it is stupid- Albert Einstein

Its not what you look at, its what you see- Henry David Thoreau




Being Proud

Today's gift is being proud.

I received one of the most heartfelt emails today from one of the mother's in my oldest daughter's class.  It was one of the emails you read over and over and over again....because it makes you feel so good and it makes you feel so proud of your daughter.  It is one of those emails you want to keep reading....just because.

Here is the email:
My son and I had a long discussion about your daughter yesterday morning.  He was talking about how she was in his first grade class and what he remembered (they are in 4th grade this year together). It was so cute, he said "Mom, she is definitely the most famous student in our school with Autism" (she spends part of her day in the classroom for students who are autistic since Rett Syndrome is on the spectrum).  He wanted to know her first word that she spoke and we listed all the words that she says.  He wanted to know when she was diagnosed and what happened.  He also was fascinated that she was developing typically and then regressed.  His interest was surprising to me.  He is not a very social kid, so it was a fun discussion to share with him.

Can you see why, I would want to read this over and over again?  I am so proud of all my daughter does everyday....from trying her hardest in school....to teaching her peers all about her, in her own special way....to seeing the difference she making in other children's lives by prompting them to open up to their families and ask questions.

This afternoon, my middle daughter said, "Mom, E in my class said he lived in C's cul-de-sac.  When I asked him if he knew M who also lived in the same cul-de-sac, he said yes and asked me how I knew her.  I said she is friend's with my sister.  Then he said A is your sister"?.....And my daughter who was having this conversation said, "yes"....to which he responded, "I have been on her webpage and really like it".   My middle daughter couldn't believe it and you could see how proud she was to hear him say these words!   She is one of the biggest advocates for her sister and always will tell you like it is with her....so she loves to hear when someone else is taking an interest in her sister.

I could not have planned either of these stories if I tried.  When my middle daughter told me her conversation this afternoon, I just knew these were my "true" gifts for today.  These are the stories you always love to hear as a parent.....these are the stories I could hear every day....these are the stories which make me prouder and prouder of my daughter.  Emails and conversations like these show me she is making a difference in the world...one friend and one "gift" at a time.....and I couldn't be prouder!

Here is a quote for today....

She knew that she was formed by God's hands, dreamed up in His heart and placed in this world for a purpose- Unknown

Thursday, September 6, 2012

The Little Things...#2


Today's gift is the little things....#2

I don't think there is anything I like better than seeing all my children playing or interacting with each other....and having a fun time!   I love the sound of laughter from my kids...much better than whining and yelling...or the highly annoying sound my son makes when he plays with his trash trucks (really this humming sound will push you over the edge!).

Today my girls were sitting on the sofa watching TV and having a snack after school.  I had given my daughter with Rett Syndrome a bowl of pretzels and my other daughter had the bag next to her (away from my oldest).  When my oldest daughter was finished with her pretzels, instead of saying "more" like she normally does, she looked at her sister and grabbed the pretzel right out of her hand before she was going to put it in her mouth!  My middle daughter and I looked at each other and started laughing...all while my oldest went on eating the pretzel looking at us like we were crazy.  It was too funny!

So I asked her if she would like more....to which she replied, "ya".  More pretzels were placed in her bowl and I told her when she was finished she was not going to get any more.  Apparently, she didn't like this idea and when she was finished with her bowl, she started grabbing the pretzels out of her sister's hand again!  Watching her interact in this playful/joking manner was so fun to see...in fact...I liked it so much, I kept giving my middle daughter a couple extra pretzels just to be able to watch my oldest daughter be funny...one more time.

Moments like these give me the extra boost I need some days...and it is amazing how the "little things" are often given to me when I need them the most.

Here are some quotes for today.....

The little things in life aren't always little- Unknown

We sometimes underestimate the influence of the little things- Charles Chestnutt

Never lose an opportunity of seeing anything beautiful, for beauty is God's handwriting- Ralph Waldo Emerson


Wednesday, September 5, 2012

Faith

Today's gift is faith.

My daughter, like all girls like her who live with Rett Syndrome, place so much faith in their parents or caregivers hands.  The amount they trust us is unmeasurable.   Quite honestly, it is scary.  I find I question myself daily....am I doing enough for her....how is she "really" doing....should I push her harder or back off a little...is there anything else I can try....the list of questions is endless.

Thanks to my daughter, I have found I must have faith from her....to tell me through words or actions, I am doing ok...or great...or I stink at this job....whatever it is I will take it... so I can try harder if I needed.  She isn't the only one I turn to when I need faith in my life and it is mainly because of my daughter I have found faith in God.  I remember the day so vividly when I realized how big the void was by not having God in my life.  My family went to church my whole life and we continued to go up until my daughter with Rett Syndrome started experiencing challenging behavior.  Every year we kept putting it off....with excuses and excuses and more excuses....until finally we made it a priority.  (To read about this special day click this link which will take you to my other blog to read a post about this day.... Hope)

In the past four months, I have seen ways my life has changed....for the better...by me turning to God for the faith I need from him.  There are so many days, where no one (or at least I feel like this...there may be a few people) can truly understand how I feel and the only one I can talk to is him.  There are days when I have so many questions....why me....why my daughter...why Rett Syndrome....and he is the only one I can ask, as he is the only one who knows the answer.  There are days when I want to scream and cry for all the lives Rett has changed....and he is the only one I can turn to for this too (of course we have a support from other fellow Rett parents where we laugh, vent and cry together, but when it comes to wanting a deeper meaning only God knows the real answer).

Today was a day when many of my fellow Rett parents, Rett grandparents, and Rett siblings....were crying and asking these questions to God.  Why...why...why... Today a 4 year old girl lost her battle with Rett Syndrome.  I have never met this special little girl, but met her parents briefly in February when we ran the Princess Half Marathon together.....in honor of our daughters....who live with Rett Syndrome.   I don't even have words....I can't even begin to imagine what her parents are feeling....what they are thinking...I just hope and pray they can find faith in God to help them during this difficult time.  Their daughter was simply beautiful and I hope they will continue to find peace by looking at her pictures and remembering all the memories they shared together.  She is free now....free of Rett Syndrome....free to run....free to sing....free to be herself....

We may never know why God has chosen or trusted some of us to be the parents of children with special needs until our final days....when we too are free.  And maybe then we will be able to handle the answer better than if he were to tell us earlier.  Throughout our lives he wants us to have faith in him and to bring all of our problems to him.  He wants us to trust him.  He wants us to believe in him.  If we can't believe in him, then how can we handle the truth of why he has trusted us so much?

I have faith.  I have faith in my daughter.  I have faith because my daughter has faith in me.  I have faith because I have faith in God.  I may not know "why" God has trusted me so much, but I will not give up on him, my daughter or my family.  I will trust him and believe he has a reason for everything.  Of course, it is difficult to come to terms with this, especially on days like today, but I have to believe and trust this is his plan for me.

Here are some quotes for today....

Be faithful in small things because it is in them that your strength lies- Mother Theresa

God enters by a private door into every individual- Ralph Waldo Emerson

God didn't promise days without pain, laughter without sorrow, or sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way.  If God brings you to it, He will bring you through it- Unknown

Faith is daring the soul to go beyond what the eyes can see- William Newton Clark


Tuesday, September 4, 2012

Happiness

Today's gift is happiness.



I was greeted with two happy girls when I picked them up from school today! I knew they must have had a great day....and nothing could have made me happier. There is always a certain feeling I get on the first day of school....filled with "what ifs" (and of course they are the "what ifs" I have no control over)...and to see my girls bouncing out to the car put all those "what ifs" to rest.

Yes...both of my girls came bouncing out! This alone made me beyond happy to see, as we ended the school year in June with my daughter still in her "cruiser" from her tendon surgery. Everybody at school was thrilled to see my daughter up and about....watch out here she comes!

My daughter's teacher said she had a wonderful first day back and was ready to get to work....love it! She was all smiles when I asked her about her day....and when I asked her how her day was she responded, "good!" I know she was so happy to be back on a routine.

I love hearing about my children's day and I wish my oldest could tell me about hers....with her own voice...like her sister does. Of course, I know what types of questions to ask in order for her to answer using one of the 70 words she can say...and of course she can use her iPad to tell me. But I want to hear it from her....I want the nonstop...detailed version of every part of her day down to the last second. Yes, I just said I wanted her to be a chatterbox like her sister....who we often tell to be quiet as she talks too much. However, it doesn't stop her...must have inherited it from my side of the family...and I (we) would NEVER tell our daughter with Rett syndrome to stop talking! She can talk all she wants, whenever she wants...and when (yes I said WHEN) the day comes for a treatment I want her to not only tell me all about her day....her wishes...her dreams....her likes and dislikes....I want her to read to me like I always do to her.

Once we got home and settled down, we had snack together and looked at all the school notes they brought home. My middle daughter said something (so sorry forgot what it was and it isn't the point of my story) to which I replied back...and then realized my answer didn't make sense and said, "duh". Right back at me, my oldest daughter repeated "duh" .....and we laughed! She loves to imitate and it makes her so happy knowing she can overcome a great challenge...like apraxia. She makes me so happy....all of the time of course....but especially when she responds appropriately to a situation!

But the biggest moment of happiness for me today was when my husband walked in the door....not because he walked in and I was ready to say "tag your it"....too soon, in about a week (just kidding!)...but of the 100% total appropriate reaction from my daughter. He walked in and my son was in the kitchen to see him first...and ran over to him, saying "Daddy". Then my middle daughter jumped off the chair in the family room and ran into the kitchen saying "Daddy"..and tried to start talking about her day...( let him walk in the door first). And then came my oldest daughter....running...gallop style....from the playroom (where she was flipping through a book!)...into the kitchen right into Daddy's arms..and said the biggest "DaDeeeee!". Melted my heart and made me so happy...for her...for him...for me and for our family. It was a beautiful moment!

So without a doubt, I think my daughter had a fantastic day and she was happy! It goes without saying she brought pure happiness to me tonight....this is a memory I will remember for a long time!

Here are some quotes for today...

Happiness is the consequence of personal effort. You fight for it, strive for it, insist upon it, and sometimes even travel around the world looking for it. You have to participate relentlessly in the manifestations of your own blessings- Elizabeth Gilbert, Eat, Pray, Love

Happiness is not a journey, it is a destination- Ben Sweetland

Happiness is when what you think, what you say, and what you do are in harmony- Mahatma Gandhi

Happiness is not something you postpone for the future; it is something you design for the present- Jim Rohn

We tend to forget that happiness doesn't come as a result of getting something we don't have, but rather of recognizing and appreciating what we do have- Frederick Keonig



Monday, September 3, 2012

Believing

Today's gift is believing



If you don't believe in a person, especially one who has special needs how do you expect them to be motivated? Every person who works with my daughter believes in her and if they didn't they would not be part of her team. My daughter knows if you believe in her and if you don't....she is one of the best judges when it comes to this topic. I love watching her interact with people who are working with her. I know within minutes if there is a connection or not.

School starts tomorrow!!!! Can you feel my excitement? Honestly, I will miss having the kids home during the day, but it is time for them to go back to school. Summer could always be shortened by two weeks...this is when my kids start to get really bored and more disagreements happen. Today my kids were all off their rocker....even my son and he doesn't start pre-k till Friday! I always know the day and night before the first day of school!

My daughters are super excited to start school especially my oldest. Ever time I mention school, her friends, her teachers....she gets the biggest smile on her face. Since "meet the teacher" day she has been flipping the pages in her yearbook nonstop. She loves school, she loves the people and she loves learning. I firmly believe the reason she loves school so much is because everyone she encounters there believes in her!

They see how hard she works and how hard she tries...and she never gives up! Her friends believing in her is one of her biggest reinforcers too! And her teacher who has been by her side for years is the biggest believer in her...she helps others see the best in my daughter and why they should believe!

Of course when my daughter was first diagnosed with Rett Syndrome, I had lots of doubts, but as time passed I realized if there is a will, there is a way. Sure she can not ride a bike like her friends....she can not read chapter books....and she can can not type a report on the computer. But she can ride a modified bike, she can read on a level comfortable for her and she can type real words she as learned on a computer keyboard! Did I think this would be possible 5 years ago...no way. Did I think we would be able to modify reading or typing for her...no. But I (we) never stopped believing in her. Every year she amazes me in what she knows and learns!

Yesterday was her 11th birthday and for the second year in a row she blew out her birthday candles! The first time she ever blew out her candles was on her 4th birthday and then she didn't do it again till her 10th birthday...6 years later. In these 6 years we never stopped believing and always tried to get her to blow out candles...to no avail. However, before her birthday last year a close friend of ours would make this bubble sound noise to her which produced a blowing sound and motion. She thought it was so funny when he would do this and she tried to imitate him. Immediately we caught on to this and kept doing this sound often to help her try to imitate the blowing motion we all can do. Last year when it was time for her to blow out her birthday candle, we said "what does Mr. C do" and she did the blowing motion and blew her candle out...her one big candle...the number 10! It was one of those moments we will never forget. Due to us believing in her and not giving up on her, she was able to blow out 2 candles yesterday to represent turning 11!

I can only wonder what she wished for...I know what my wish is for her. She has taught me to never give up believing in her...and I never will. But her gift has also taught me to believe in myself....as there are many days I have doubt...and when those days come I just think of a little girl who believes in me to help her.

Here are some quotes for today...

Believe in your dreams and they may come true; believe in yourself and they will come true - Unknown

Believe and act as if it were impossible to fail- Charles F. Kettering

Success means having the courage, the determination, and the will to become the person you believe you were meant to be- George Sheehan