Friday, October 25, 2013


It feels like a year since I last opened my blogger write.   However, on Wednesday, October 30th it will be only THREE months!

When you do something....anything....every single day it just becomes a routine.  The norm.   And sometimes you have to take a step back to see what others see.  To see your life and every thing around you from a different perspective.  For one day or ten days or not do the norm.

A break.  A hiatus.  A holiday.  A vacation.  Whatever you call it....take it.

That is exactly what I did.  What I needed to do.

Challenging myself to blog for 365 a row...about my daughter with special needs was not easy.  Finding the gift she gives to me daily...was challenging.  Some days it was blatantly obvious, while others I was still searching well into the night.

Blogging about my true feelings and opening up to friends, family and complete strangers was hard for me.  However, I knew keeping everything bottled up inside would only make me feel worse.  I knew getting it out would not only help others who try to understand our world get a better picture...a better understanding, I knew there was probably another parent out there who was struggling with the same feelings I had and I hoped my words gave them strength and encouragement.  For everyone I hope my gifts from my nonverbal daughter, was a chance for everyone to reflect on their own their own families.

Since I  have completed my myself, I have made many changes in my own life.  For the better.  I have truly seen what is important and what matters.  I feel energized and ready for the next challenge.  Right now, I do not know what that is, but I am sure it is not too far away.

My blog, 365 Days of Gifts from My Nonverbal Daughter has come to an end.  However, the gifts do not.  The gifts my daughter has given to you....will continue to give every time someone reads them.

Thank you for sharing the past year with me and I hope you will continue to follow our everyday journey over on my other blog which took a holiday when 365 started.  Here is the link

Emilie and Anna amazing daughter who keeps on!

© copyright 2012 – All rights reserved
365 Days Gift

Tuesday, July 30, 2013


Today's gift is patience.

I have wanted to write a post about the gift of patience for a while;  however one day it came to me that this gift would be best as the last gift.

Why?  Because the gift of patience is one I work

My daughter is one of the most patient people I know.  She waits for so much and after she waits she probably is hoping and praying we know what she really wants!

Being patient is hard....probably one of the hardest things to learn and to practice.

I have learned from her that everything takes time and you have to be patient.  As much as I would love for things to happen overnight, they do not.  I have to take a deep breath and trust, if it was meant to be, it will happen.  If it doesn't happen then it wasn't meant to be or the timing wasn't right.   It has taken me a long time to try and practice living this way....and I still work on it...daily.  Some days I am better at it than others.  But just when I need a reminder, my daughter will show me a sign that I need to be patient.

My patience is tested daily.  All three of my children test my patience and some know how to push me over the edge more than the others.  However, of all my children, it is my nonverbal daughter who truly understands what patience is.  Can you imagine waiting for someone to unlock the magic gene so you can talk?  So you can use your own two hands...functionally?  So you can walk around without having someone be within arms reach?  So you can have privacy?  So you can live the life you deserve?  And while she waits so patiently....for just about everything, she does it with a great attitude.

I honestly do not know how she does it.  I honestly do not know if I could do it.  She simply amazes me.  And at the same time it kills me to have to watch her wait....patiently, when of all people she should be demanding!

Watching my daughter deal with her struggles associated with Rett Syndrome, old and new, is truly inspiring.  Over the last 365 days I feel like I have connected with her on a whole different level.  I have so many emotions going through my head as this chapter...this challenge....this blog comes to an end.

I am rejuvenated as I have learned so much more than I ever thought possible.
I am ecstatic I actually stuck to my promise to myself and blogged about a daily gift from my nonverbal daughter for one whole year.
I am relaxed as I have learned from my daughter how to find my inner "calm" and to not worry, but to let God worry for me.
I am inspired as there is no better teacher than someone who doesn't take anything for better teacher than one who teaches through actions and few words.
I am proud...proud of my daughter for all she has accomplished, all she has learned and all she has overcome and most importantly for who she is.
I am a little sad as I have truly enjoyed writing about her daily gifts, learning from them and sharing them with others...sharing them with you.
Finding the true gifts amongst the grey has helped me deal with all the pain over the years.

I will be honest, there is still a little piece of pain which will always live inside my heart for my daughter.  I do not think it will go away until there is a cure for her.  Until that day....I will have to live just like my teacher has taught me....patiently.

Here is one quote and one poem to end my year of gifts.....

Living with silence teaches a great deal.  When you cannot speak, you learn to share more from the heart.  Instead of giving words, you give love- Author Unknown

A Special Child
You weren't like other children.
And God was well aware, 
You'd need a caring family,
...with love enough to share.
And so He sent you to us,
And much to our surprise,
You haven't been a challenge,
But a blessing in disguise.
Your winning smiles and laughter,
The pleasures you impart,
Far outweigh your special needs,
And melt the coldest heart.
We're proud that we've been chosen,
To help you learn and grow, 
The joy that you have brought us,
Is more than you can know.
A precious gift from Heaven,
A treasure from above,
A child who's taught us many things,
BUT most of all "REAL LOVE".
By Sharon Harris

Monday, July 29, 2013

Keep Calm and Carry On

Today's gift is keep calm and carry on.

Remember in one of my posts from last week I mentioned in due time I would fill you in on how the Rett Monster has affected my daughter...again. Well, here it is.

The day we left for our trip to Texas....the first night on the daughter started having seizures. We were in complete shock and somewhat in denial.

We were full of questions and full of fear.

When we travel we always get two hotel rooms....makes sleeping much more enjoyable....and a way we can actually sleep!  The first night on the road my husband shared a room with my daughter and I stayed with our other two children.  He was the only one to witness my daughter having seizures that night.  He was nervous, scared and obviously wasn't expecting it!

It was four days later when we witnessed another series of seizures.  It was at this point we knew the Rett Monster was rearing its ugly

The last one on our trip was on July 5th at 1:26am ( yes, I remembered every single one ).  I couldn't sleep anymore as I was so upset for my daughter.  I really have not witnessed someone having a seizure before and it was scary. Watching your daughter shake uncontrollably is one of the worst things....ever.

I couldn't believe she had to start dealing with another aspect of Rett.  I couldn't believe it!  I emailed two of her doctors to ask for help and advice since we were traveling and away from home.   After I sent the emails, I just laid next to her....holding her hand and looking at her.

Just like I made a promise to her the day she was diagnosed with Rett, I made the same promise....I would never give up on her.   I believe in her and always will.

At this moment I told myself, this is just a bump in the road.   The best thing to do is to keep calm. Whatever happens is going to happen regardless of any "extra" worrying I do or do not do.  I also thought how my daughter could be affected in so many other ways by the Rett Monster or other medical conditions....and is not. While we are upset of her new issue, we still have so much to be thankful for.

Today she had an EEG performed so we can get a better picture of what is going on with her seizure activity.  After another "happy" day for my daughter I couldn't believe we had to go in and have this test done.   It doesn't hurt, but it takes time to place every electrode...28 to be exact...on her head, while keeping her still!  And then making sure she doesn't rip them off while entertaining her for the actual test.

The technician was one of the best we have had...ever!  Before he did anything to my daughter he explained it to her by showing her exactly what he was going to do....on her hand!  This right here is huge all by itself!  He just assumed she understood everything you say without us having to tell him!

To say my daughter rocked the EEG is an understatement!  She was awesome!  Through it all....she still had a smile!

This picture says it all...keep calm and carry on!  My daughter does this so well.  Whatever life hands her, she learns to overcome it.  She hardly let's something get her down.  Instead she hits it head on and keeps moving forward.  She knows it isn't easy, but she knows it is worth it!

I have learned to keep calm and carry on from my daughter.   It wasn't until this new issue was introduced into our lives that I truly saw myself take her motto and use it.

I had a really good cry when it first was apparent we were indeed dealing with seizures.  I then took a deep breath and decided I needed to carry on, carry on for my daughter.  I pray every night and leave all my worries with God.  By allowing him to worry for me, I am able to keep calm.

And I have to say, I should have listened to my daughter a long time ago....this way is much better!  I honestly feel like a different person.  This is just another storm we must ride out....but together we will carry on.

Here are three quotes for today....

I will not cause pain without allowing something new to be born- Isaiah 66:9

When God pushes you to the edge of difficulty trust him fully because two things can happen; either he'll catch you when you fall or he will teach you how to fly- Author Unknown

You never know you STRONG you are until being STRONG is the only choice you have- Author Unknown

P.S.  As I was writing this tonight, I went in to wake up my husband who had fallen asleep putting my daughter to bed and this is what I found....I am not the only one who loves to hold her hand!

Sunday, July 28, 2013

Happy Happy Happy

Today's gift is happy happy happy!

My daughter had a overall happy day today.  Whether you consider Sunday a day to wind down the weekend or to start the week....our day was a great one.  A happy one!

She started the day by sleeping in....she is her mother's daughter!  Then we went to church.  My daughter truly loves going to church.  Just like there is something about being by the water that calms her, she is equally as calm in church as well.  She loves the music, she loves listening, she loves people watching, she loves it all.  I love seeing her like this!

After church we took the kids out to lunch and then we came home to relax and get ready for the busy week ahead.  Camp Amica (the camp I run out of the home for my daughter and her typical peers) starts this week!!!  When we talk about it she lights up...she loves being around her friends!

Then we enjoyed a delicious dinner at our friend's house with two families.  Two families who "get" our family and are beyond supportive of us.  We love being around these friends as they understand our family and will do anything to make our daughter feel comfortable.  I remember the days we would do all of the entertaining because it was easier for us and easier for our daughter.  Now because of the amazing friends we have we can take our daughter to their homes and she feels right at home.

Today was one of those days where you look back on it and was a great day.  From the moment my daughter woke up to the moment she went to bed, she was happy.  Days like today make me happy.  Days like today I wish we could have all the time.  Days like today are the ones you will remember most.

Days like today you hope is an indication your week is off to a great start!

Here is quote for today....

I can only think of one thing greater than being happy, and that is to help another be happy too-  Jim Thomson

© copyright 2012 – All rights reserved
365 Days Gift

Saturday, July 27, 2013

Impromptu Drive

Today's gift is an impromptu drive.

My daughter loves to ride in the car.  If we could drive anywhere it would make traveling much easier for us!

Since she enjoys riding in the car so much it actually makes impromptu drives easier.  However, there is still the land of the "unknown" once we arrive.  We could live a life of "what-ifs" and not do anything....but we don't.  We go, we do and we take it minute by minute.

This morning my husband and I tried paddle boarding together for the first time.  It was so much fun and I highly recommend it!  We spent 2 hours on the river this morning and it was the perfect way to start off the day.  The water was calm, you could hear nature and it was incredibly peaceful.  I guess being on the water this morning made us want to see water this afternoon....with the kids.

After lunch we put in the kids in the car and drove to the river....or the rivah.  My daughter loves being by any type of water....pool, lake, river, name it....she loves it!   I honestly find she is more relaxed near water.

After driving around we stopped for an ice cream treat.  My daughter chose mint chocolate chip for herself and enjoyed every last bite.  Ice cream treats are the best wherever you go!

i scream, you scream, we all scream for ice cream!

"Impromptu" drives, get togethers, events, etc.....are the best.  I truly love them.  Typically there is no stress involved and you just go with the flow.  We are so blessed we are able to enjoy impromptu "things" as I remember the day we could not.....and it wasn't fun.

Having fun without the planning involved is the best and also is a nice surprise for everyone.  And of course when there is water involved it is a double bonus.  No matter spring, summer, fall or winter being by the water instantly soothes the soul.

Here is a quote for today.....

When you do things from your soul, you feel a river moving in you, a joy- Rumi

© copyright 2012 – All rights reserved
365 Days Gift

Friday, July 26, 2013

Her Pointer Finger

Today's gift is her pointer finger.

Another beautiful day here equals more porch time.  I can't believe the amazing breeze we are having in July!

My daughter loves sitting on our back porch.  I honestly think she would sleep out here if I let her....who knows maybe I will let her sometime.

When she is outside she loves to either take in nature by relaxing and taking in all the sounds.  Or she likes to play on her iPad.

As she is on her iPad I am just amazed at the use of her pointer finger.  She is extremely blessed to have incredible finger isolation.  If she didn't have the finger isolation that she does, then when she touched her iPad with her whole hand and no finger isolation the same button would be pressed over and over again OR nothing would happen. When touching anything "i" related you need to be rather precise in where and how you touch the button.

If she pressed a button but didn't receive the output she was expecting it would be extremely frustrating for her resulting in her not staying engaged or interested in the iPad anymore.

Lucky for her....lucky for us.....this is not the case.

Can you imagine not being able to use your hands the way you want to?   Can you imagine only having one strong finger to help you be able to actually do things....on your own?  I am so thankful my daughter has this strong pointer finger to help her be able to make choices, initiate requests by pointing, have fun, and to be able to help her not wring her hands by having that one finger busy.

I am sure there is another finger my daughter would like to show to the Rett Monster...but she hasn't....yet.

Something so little to most, yet something huge for another.  Something truly life changing.

Here is a quote for one day....

A dream is a wish your heart makes- Author Unknown

Thursday, July 25, 2013

Talking TO Her IPad

Today's gift is talking to her iPad.

Yes, you read that correctly.  My daughter was talking TO her iPad today!

Probably one of my favorite features on any ACC (augmentative communication device) device is the voice output.  Whenever you hit a button, the button pressed is spoken back to you.  The button acts as your voice.

I honestly feel my daughter loves this part too!  It talks for her.

Along with the iPODD (which she is still learning) she also still loves her iPad.  She uses it more for watching movies, listening to music and playing games than speaking....but she does still visit her communication software on it to talk fairly often too.

Sometimes when you hit a button there is a little delay in the voice output.  Especially when you are trying to get the device to speak the word accurately for when you have made changes or added a button.

This afternoon my daughter and I were sitting on the back porch.  It was GORGEOUS outside and we were taking in the incredible weather like it was candy!  She was listening to music on her iPad and then she was "talking" with her software.

She was on the page with all her school teachers and she was hitting their buttons.    These buttons are some of the buttons where the voice output is on a little delay.  As she was pushing the button, it would say "Mrs".....and then there would be a brief pause before it would say the last name of the teacher.  She kept hitting the same two teachers  over and over again....and they both happen to be her speech therapists at school.  One she calls by her last name "B" and the other one she calls by her first name "T".

So this is what daughter would hit one of their buttons....the voice output would say "Mrs" and in the delay portion she would say "B" or "T" for which ever one it was....and then you would hear the iPad say their last name!  She did this over and over again.  It was so cute!  There are not many times when I have seen her TALK TO her iPad like this before....if ever!

I think she misses seeing them and she was letting me know it.  We are very blessed to have B and T on her school team....they truly believe in my daughter....and she knows this!

Here is a quote for today....

You are never too old to set another goal or dream a new dream-  C.S. Lewis

© copyright 2012 – All rights reserved
365 Days Gift

Wednesday, July 24, 2013

Excited to See Daddy

Today's gift is excited to see Daddy.

My husband has been away for the past three nights and we picked him up at the airport early this evening.  I don't know who was more the kids!

I think it is safe to say we were all very excited to see him!  However, one little girl was super excited to be going to get daddy.   All the way to the airport my daughter was saying "daddy, daddy, daddy". She was all smiles dancing in the back seat.

And then she did her famous...'I am super happy' pose....arms over the head!

sorry they are blurry...she was so excited.....she was dancing nonstop!  

From the moment he got into the car till the moment she fell asleep she was by her daddy's side.  You could tell daddy's little girl definitely missed her daddy.

My other children can tell me they miss us when we are gone...they can vocalize their daughter can not.  We have to watch her body language and also listen closely for the few words she can say to express her feelings.  After eleven years I can interpret a lot from my daughter; however, there are still times I feel lost.

Tonight's feeling of excitement and joy was not a was 100% accurate.

Here is a quote for today....

Some people don't believe in heroes, but they haven't met my dad- Author Unknown

Tuesday, July 23, 2013

Fun Day with Her Friend

Today's gift is a fun day with her friend.

My daughter has a fun week planned. Two friends are coming over this week to hang out!  Today one friend came over.

She loves spending time with her friends.  They truly make her happy.  There are no words to describe how it feels as a mother, to see a friend of your child's....your child with special needs....treat your child with such compassion.  My daughter's friend understands my daughter.  She helps her whenever she needs assistance.  She communicates with her using not only her own voice, but the iPad and be an example to my daughter as modeling is key.  My daughter's friend is patient with her and doesn't take it personally if my daughter is not on her A game one day.  She is one of my daughter's true blessings.

"Anne Sullivan" took my daughter and her friend out on the town today.  They started at PT with my daughter this morning.  This isn't the first time my daughter's friend has accompanied her to PT.  I love it when her peers go as they get to see exactly what my daughter goes through on a weekly basis just to keep moving.  They get to not only see what my daughter experiences every week, but others like her. It is a glimpse into a world they do not see often, but one that exists for to many.

After physical therapy the three of them had fun going to a local art museum, walking around downtown and enjoying lunch out.  We are so incredibly blessed to have "Anne Sullivan" for many reasons, but one I never truly thought about was until my daughter started getting older.  When my daughter "hangs out" with her friends or goes places with them...."Anne Sullivan" can go with her and it is "cool" and accepted by her peers.  If I went, it wouldn't be so cool at all!  Even my daughter wouldn't want her mom tagging along all the time...who can blame her.  But "Anne Sullivan" is truly thought of among my daughter's peers as the big sister.

My daughter's friend stayed over well after "Anne Sullivan" had left.  I love watching my daughter interact with her friends.   I love seeing the genuine friendship they built on actions and few words.   I love watching her friends get involved in her world....because they want to.  I love watching how comfortable my daughter is around them....and them around her.  I love it all!

One of the sweetest moments today was sitting next to them as they watched a movie.   My daughter was tired from not only a busy day, but also from getting up early.  As they watched, my daughter laid her head on her friends shoulder.....and her friend didn't mind.  It melted my heart...

Friends are important for all of us.  I couldn't be happier for my daughter that she has some amazing friends in her life.  I just hope and pray as time goes on, they remain true friends.

Here is a quote for today....
Friendship isn't about who you have known the longest. It's about who walked into your life, said " I'm here for you" and proved it- Author Unknown

Monday, July 22, 2013

Hanging Out with Her Brother

Today's gift is hanging out with her brother.

Early this evening after dinner my daughter walked into the playroom and sat on the sofa.   Her brother was in there playing Wii and she wanted to hang out with him.

It was the most precious and sincere thing I've seen her done in a while.  She didn't want to bother him, like she sometimes does, but truly wanted to sit and watch him play.

I let them have their time for a little bit, then I went in to join them.  We all hung out where my daughter wanted to instead of us telling her where to sit.  It was the perfect way for us to unwind from the day.

I love watching my daughter with her siblings.  She has a different relationship with both of them and they each help each other grow.  They get along, but they also have "typical" tiffs like "typical" siblings.  Siblings for my daughter have been the best gift to her!

Today's gift was one which is small, but one packed with lots of love!

Here is a quote for today....

In a family love is spelled T*I*M*E- Author Unknown

Sunday, July 21, 2013

FaceTime with a Friend

Today's gift is FaceTime with a friend.

Let me ask you a question, does your child text or FaceTime with their friends? You probably answered yes to this question. And my answer is yes for my other two children too. Well, actually my 6 year old son doesn't text his friends, but he does text and FaceTime his family.

I know my oldest daughter would be doing the same thing...if she could....on her own. But she can not.

The next best thing is having her friends FaceTime her, on her iPad or FaceTime her sister to talk to her. And tonight after dinner one of her friends did FaceTime her!

My daughter's face lit up like a Christmas tree when she saw her friend. I love to see the joy they bring to my daughter. I love how my middle daughter helps her sister connect with her friends by holding the iTouch or iPad so she can see them and will also follow her around the house if she is on the go so they can still interact. Something so easy, yet means the world to someone.

Technology today has really helped people with special needs in so many ways. But from a friendship point of view it has made a huge difference in my daughter's life. FaceTime is a game changer for relationships and friendships for someone in our shoes. From us being away from our daughter to her friends wanting to see her and talk to her...FaceTime allows this to be possible. They can do all the fun things they would do in person to make my daughter laugh over wi-fi! In person is always better, but when it isn't possible FaceTime is second best.

Here is a quote for today....

Technology is a given, not a debate- Author Unknown

Saturday, July 20, 2013

The Little Things #11

Today's gifts are the little things #11.

When you have kids and you are away from them it is so hard not to think about or talk about them. It can be anything from a song you hear reminding you of them, another child you see doing something they do or just the fact you can picture them with you enjoying the place your visiting too.

This afternoon as I was sitting in the sun looking out into the water of the Chesapeake Bay I couldn't help but think of my three kids and how they would love it here. Each one would love different things showing their personalities. And it is often at these times when I tend to feel upset for my daughter with Rett Syndrome and how I wish she could enjoy everything like her siblings.

There is something incredibly relaxing about the water. It helps clear my head and truly helps me think. I was having all these thoughts run through my head of how if we brought all the kids here there would be some things my daughter couldn't do which my other two would want to. And then it is a case of divide and conquer....which I don't like....but a concept we know all too much about. But just as I was thinking this out in the water comes a mom on a paddle board with her child sitting on the front.

It was then that I reassured myself, a trip is what you make it. Everything we do has to be altered some way, but it doesn't stop us from going and doing. Of course it would be ten times easier if Rett wasn't in our life, but it is. And we don't take for granted what we are able to do.

So if we have to divide and conquer at what. At least everyone is having fun. The most important thing is we are together and enjoying the moment.

When I saw the mom with the paddle board, I couldn't help but wonder if my daughter would sit on it with me. I don't know why not as she has an unbelievable core. And of course she would be sitting in front of me with a life jacket on....and I would have someone else near by. It is something I would love to try with you never know until you try.

My daughter has definitely taught me how to make the best of a situation. She has taught me to appreciate what is truly important in life. She has taught me to try new things and be adventurous. She has taught me to live life to the fullest. And all of these values I try to apply to our life together...and it has made all the difference!

Here are two quotes for today...

Change your thoughts and you will change your world- Author Unknown

Embrace imperfection, it's a sign you're not afraid to try new things- Author Unknown




Friday, July 19, 2013

Her "Anne Sullivan"

Today's gift is my daughter's "Anne Sullivan".

Our entire family was incredibly blessed when my daughter's one to one...her "Anne Sullivan" walked into our lives. She started as my daughter's teacher...and still very much is....but something more came out of the relationship.

She became a friend to all of us. She became like a big sister to me. She became like another daughter to my parents. She became like an aunt to my other two children. She became family.

She truly is the big sister I never had.

"Anne Sullivan" had her "29th" birthday not too long ago and my mom and I wanted to take her away. Well, thanks to my husband, my dad and my mother-in-law this weekend we are celebrating! It has been planned for a while and the weekend is finally here.

I have to also thank my daughter for sharing her with me today as today was a day off from school work for my daughter. And once again, if it wasn't for my daughter with special needs, "Anne Sullivan" would never have entered our lives.

I honestly can not put into words how amazing she is. She cares and loves my daughter just like we do. She believes in her just like we do. She is incredible with her. She is the reason my daughter can do as much as she can. She is my daughter's angel.

But just as she is important to my daughter, she is important to me too. She is the big sister I never had. She is truly one of the only people I can talk to about things as she truly gets it, as she lives it with me. It being Rett Syndrome. She is the hand I need to hold when I'm scared, she is the shoulder to cry on when I need comfort and she always has a joke when I need laughter.

I can't thank her enough for all she does for my little girl, for me and for my family. She truly is an angel.


Here is a quote for today....

Every good and perfect gift comes from above- James 1:17

Thursday, July 18, 2013

Knowing the States

Today's gift is knowing her States.

My daughter has been on a roll playing games lately.  The key is catching her when she is willing to sit for a period of time and play.   When she does this she loves playing games.

While I was making the kids lunches today, "Anne Sullivan", my daughter and my son played a States game.  I was curious to see how "Anne Sullivan" was going to introduce this game to my daughter.

The game is played where you roll a die and what is shown on the die indicates where you move to and what type of State question you get asked.  No matter the question, you have to answer with a name of a State.

Right at the beginning, "Anne Sullivan" went to my daughter's iPad and pulled up her States page under social studies.  I didn't even know we had that button!!!!  In my defense, it is not one we would have used often as typically Social Studies is done in school...but now knowing it is there will be so helpful!!!

My daughter would roll her die and then "Anne Sullivan" would ask her a question and give her two States to chose from for her answer.  Would you believe she got EVERY one right!?!?!  I couldn't believe it!

I love watching her be able to play a typical game with her siblings.  I love watching them help her learn.  I love watching them get excited for their sister when she achieves success!  I just love to watch them interact.

This is the second game this week she has played and showed an interest in the game.   Not every time we ask her to play does she want too...and that is I said you have to catch her at the right time.  But knowing she can play and enjoys it makes me so happy for her.  And what makes me happier, is watching her play a typically game with her siblings....sharing a typical moment.

Here is a quote for today....

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

© copyright 2012 – All rights reserved
365 Days Gift

Wednesday, July 17, 2013

Giggles with Her Sister

Today's gift is giggles with her sister.

Short and sweet.

As most of you know it has been a hot and very sticky week!  My daughter loves to sit on the porch outside, but right now it feels like you are walking into a sauna sitting out there....even with the ceiling fan on.

She asked many times to go outside and I kept saying it was too is too is too hot.  Luckily she didn't get too mad at me.

After dinner she was standing by the door pointing and saying "go".  How could I say no!?!  So I opened the door and told her she could sit out there for ten minutes as it was still steamy.  I asked her sister if she would sit outside with her while I cleaned up the dinner dishes.

All I heard was laughter!  They were laughing non-stop.  Full on belly laughs.  And to be honest I have no idea what they were laughing at!  My oldest daughter was just laughing as she was throwing some cushions around and my middle daughter was laughing at her sister laughing.

the shirt over the head = laughing really hard and something is really funny

It was really cute and one of those moments where you find yourself laughing too....and you don't know just do!

There is nothing better than hearing the laughter of a child....especially when it is your own!

Here is a quote for today....

Laughter is the shortest distance between two people-Victor Borge

© copyright 2012 – All rights reserved
365 Days Gift

Tuesday, July 16, 2013

Feeling Relaxed

Today's gift is feeling relaxed.

There are not many times during the day when I can honestly say my daughter is "truly relaxed".  No hand wringing, being calm and looking like she has no worries in the world.

I hardly ever see her feeling this way when she is in a therapy.  The only time at therapy she gets like this is when she is being massaged....then who can blame her for being relaxed.  I would be too!

Today, she not only had physical therapy, but also the chiropractor.

Today was also the first day she laid on the table and was 100% completely relaxed.  The chiropractor was finished and she was still laying there!  She was so relaxed, I honestly thought she fell asleep!  It made me feel so good to see her like this as I always feel like she is so tense and anxious.  It made me feel really happy to see her like this, while she was being adjusted, as usually she starts to get a little anxious right before...even though she loves it!

She even relaxed on the wave table afterwards and never tried to get up before her time was finished!

I love to see her in a relaxed state as her body moves constantly throughout the day.  It truly isn't until she is asleep that her little body stops moving.  If she isn't walking around, her legs could be jerking or her hands are wringing.....something is always moving.

I wish she could have many more relaxed days and give her little body a rest.  I can't imagine moving constantly throughout the day. Sometimes we just need to be still....and relax....and take that deep breath.  I hope she enjoyed her minute of pure relaxation, she definitely deserved it!

Here is a quote for today.....

Relaxation means releasing all concern and tension and letting the natural order of life flow through one's being- Donald Curtis

© copyright 2012 – All rights reserved
365 Days Gift

Monday, July 15, 2013

Playing a Game

Today's gift is playing a game.

Last week Mimi brought the kids a new game to play.  She is always on the lookout for new games my daughter can play and games which can travel easily.  The newest addition to the game cabinet is Tenzi....a dice game.

Tenzi is really fun.  But what makes it really fun is the fact the whole family can play it...all five of us...even my daughter with special needs.

I played it yesterday with my son for the first time to understand the game.  There really isn't too much to understand as the directions are really easy to follow.  It was a fast moving game too, which is always good for my daughter.  She doesn't like waiting needs to keep moving.

This afternoon we had some down time before dinner, so I thought it would be a great time to introduce Tenzi to my daughter.  Granny was over too, so I was able to introduce it to her as well.  I also used this time to play the game using her iPODD.  I started off my telling her through PODD I had something to show her...a dice game.  Then I asked her through PODD what color she wanted to be (yellow, orange, green or blue) to which she picked blue.

The three of us played the game.  She truly enjoyed it and sometimes she would get our goat and throw the dice in the opposite direction, which required Granny to get up and get it and she would laugh (my daughter....not Granny!).  While we played I would say using PODD it was her turn to roll or she was done or it was my turn or it was Granny's turn.

My daughter was also enjoying a snack while playing.  She had been watching and hearing me say "another" through PODD for it was " her time for another roll".  Well, she took that icon today to indicate a different reason for wanting "another".... It was to tell me he wanted another pretzel!
How incredible was it that she was communicating to me using an appropriate word on a new page in her PODD book while playing a game!  She has always used the word "more" either verbally or through her iPad to indicate she wanted "more" to eat....never has she used the word "another"!

So in reality, even though she didn't say it verbally, she definitely gained a new word to add to her vocabulary list as she proved to me today she clearly knows the meaning of the word "another"!

And the best part of the game...was telling her through PODD, that she won! She was so proud of herself!  It came down to my daughter having one die left and me and Granny having two.....and the luck of the roll.  It must have been the good luck kiss my daughter gave her die right before she rolled it into Granny's get her the lucky number she needed to win!

What a fun way to end our afternoon. We are big fans of Tenzi and can't wait to play again!

Here is a quote for today....

Always walk through life as if you have something new to learn- Vernon Howard

Sunday, July 14, 2013


Today's gift is hope.

I have two blogs, but unfortunately the other blog has taken a back seat since I started this one.  It is really hard to write for one blog, let alone two.  Once this one is finished (16 more to go!!!), I will continue to write on my first blog, originally titled Her Climb, but changed it too Our Everyday, Finding Color Amidst the Grey, in October 2012.

Back in April of 2012, I wrote a post on my first blog titled, HOPE.  This post was written when our journey with Rett Syndrome hit a bump in the road with my daughter and how hope had entered our lives in a couple of ways.

Hope always has a way of finding its way into our lives when we need it the most.  It really does.

The church we started attending a little over a year ago is called Hope.  I would love to say we have been regulars, but we haven't.  We were really good at the beginning, then we started going down hill.  Some of the reasons were to do with my daughter and others were not.  It left an empty hole in our I honestly felt.

After being away for the last FIVE out of six weekends, we finally made it a much needed priority to go back to church.  It felt incredible to be back.  It was exactly what I needed and as soon as we entered I felt the "hole" go away.

Last Saturday I wrote a post titled, "A Message".  What you do not know (yet, in due time you will) is that this message came at a time when my husband and I really needed it as my daughter was having the Rett Monster enter her world in a way he never had before.  The "message" of hope that was given to us that Saturday morning I will never forget.

My daughter loves going to church.  She sits with us and does not attend the regular Sunday School class...yet.  I still say "yet" as I would love for her to participate, but the other side of me also enjoys having her be by our side listening to the sermon.  She loves the music and loves people watching.  If she didn't enjoy it, then I would help her in Sunday School.  Right now, this is a good fit for all of us.

We watched a short video in church this morning, which was extremely funny....and she laughed appropriately!  She was laughing at the joke just like the rest of us!  And she was able to witness two babies getting baptized.

Then at the end of church as we were walking out of our aisle, the gentleman behind us, tapped my husband on the arm and said something.  I couldn't hear as it was loud from the music, but by the tears welling up in my husband's eyes when I said, "what did he say" told me it must have been powerful.

Once we were out in the hall, we pulled over to the side and he told me the gentleman said, "thank you for loving her".  Ok...tears in two parents eyes!

Two wonderful messages of hope one week apart!  You know what they say....things happen in threes!  I am very curious what my third message of hope is going to be.

I went on to get our other two children and while my husband was waiting for me, the man came up again to him.  They started talking and he ACTUALLY knew what Rett Syndrome was...I mean REALLY knew!!!!  He asked my husband if there was anything he could do for her and he said, "just please pray for her".   I can not thank this gentleman enough for taking the time to say those five words which really meant a lot and truly caring about us and our daughter.

Why do I call both of these messages, messages of hope?  Because both are telling us how special our daughter is and how she was given to us to love, nurture and care for, for a reason and how through hope, we will see this journey through.  Both of these messages would not have been given to us if it were not for our daughter having special needs.

Getting this message today at HOPE, was the sign I needed to remind me we do need to go to church as much as we excuses.  I feel like a different person when we leave church on Sunday and it helps me start my week of right.  I have tried it the other way...praying at home, on my own.  And it isn't the same.

Both of these messages were perfect for my husband to receive first hand too as he deals with his emotions and concerns with Rett Syndrome differently than I do...we all do.  It was a perfect reminder for him too, that sometimes we do need a place we all can find hope on our own personal level.  All of, my husband, my daughter with Rett Syndrome, my middle daughter and my son.   We all need hope in our lives.

Here is a quote for today....

For I know the plans I have for you, says the Lord.  Plans to prosper and not to harm you, plans to give you hope and a future- Jeremiah 29:11

© copyright 2012 – All rights reserved
365 Days Gift

Saturday, July 13, 2013

Her Love for Boo

Today's gift is her love for Boo.

My daughter loves the movie Monsters Inc.  This movie came out when she was 7 1/2 weeks old!  I don't know when the first time she saw it was, but I do remember it was instantly a favorite!   It was this movie which got her saying the word "boo".  When she was little many people would come up to us and say she looked like Boo in the movie.  And she did.

This summer as you know Monster's University came out and I can not wait to add it to her collection of movies.  There is something about Boo, Mike and Sulley that she loves.  Maybe it's just the fact they make her laugh and she is happy when watching them.

With all the hype of the new Monster's University movie the stores have all kinds of Monster's themed items...books, dolls, toys, games, etc.  Right before our road trip I bought her a new Monster's book...Boo on the Loose.  It is an early reader one and the reason I bought it.  I was hoping and thinking we could read it together.  What a better motivator too, than to read about her favorite characters!

We read it over our trip, but tonight was the first night she was "awake" enough when I put her to bed to be interested in reading it with me.  I let her read all the words she could say (some required a partial prompt) where others did not.  She said all three characters names by me just pointing to their pictures on the page....(Boo=Boo, Mike=Mi, and Sulley=I would say Sull and she would say E).  This part of reading the story was her favorite!

After we finished the book, she looked at me and said in her most sincere voice, "Mommy"....which to me means she was so happy!  I asked her if that was fun and she said, "ya"!

I love taking what she knows and what she can say and use it in a totally appropriate, typical setting. Of course the book isn't on peer level, but I don't care.  It is on her level...and a level I never thought she would be on.

This was taken in September of 2011 at Disney!

Here is a quote for honor of the movie here is a quote from Monster's Inc....

You're not supposed to name it.  Once you name it, you start getting attached to it- Mike to Sulley in regards to naming the little girl, Boo.

Friday, July 12, 2013

Getting Her Point Across

Today's gift is getting her point across.

Even though my daughter can not communicate verbally, she has many ways to get her point across. As you know from previous posts she will use the words she can say to request something she wants.  But not all the when she can not verbally express the word she wants to say.

Frustrating.  I can't even being to imagine.  I think we should all try it for one day.  To live in her shoes. I bet we wouldn't make it an hour.

If she doesn't have the word she often will use gestures or actually get the thing she wants.  If I had to pick a favorite gesture she uses to get her point across, it would be how she indicates she would like her legs she did tonight.

She waits for you to sit next to her and within minutes she will throw her leg over on top of your lap, pull her pant leg up (if needed) and point to her leg.  If you stop, she will wiggle her leg or make a sound to indicate she wants you to continue.  She really cracks me up.

I know where she gets this gene!   I love a good massage!

Even though there are many ways for her to express what she wants, there are many days we are still left in the unknown.  The days we are lost are often the times we wish we understood or could help her the most.

Here is a quote for today...

I know it's been tough, but I'm still cheering for you...always...- Author Unknown

Thursday, July 11, 2013

Being Calm

Today's gift is being calm.

My gift today is one of those gifts which is actually given to me almost every day by my daughter.  There are so many different situations we put her in (some stressful, some not) where she is so calm.   When she is calm in a stressful situation I am always most impressed and wish sometimes it would rub off on me.

Well, today probably for one of the first times her gift of being calm, did rub off on me.  And I didn't realize it until long after it happened.

This afternoon I was trying to get in a quick manicure as my nails really needed it.  Little did I know that after my 45 minutes of relaxation, I would be a "little" stressed for the next hour or so.  Right at the end of my manicure a man walked into the salon (no hold-ups!) and asked if anyone in the salon drove a black SUV.  I said, "I do".  To which he then explained he "clipped the tire and there is a little scratch on the side, but nothing that can't be wiped off".  He then went on to point to the shirt he was wearing noting the name of his company.  He was very quick and out the door.

First, I was shocked.  Second, I trusted him as he actually came in to find the person whose car he hit.  Third, being alone, I didn't want to go out to the car and talk it over with him before he left (you never know in today's world).  And fourth, as soon as he left, I took a picture of his work truck leaving, how close he was to my car and got the license plate.

Little did I know someone else was taking pictures the whole time too!

After he pulled away another man started walking around my car....actually inspecting it.  So I talked to him (he happened to be a doctor in the office two store fronts down) in front of the salon and he witnessed the whole thing! He was taking pictures as he assumed the guy did a hit and run.

I asked him if it was just a scratch, like the guy said it was and he said, "not unless you call a scratch a dent.  Your car actually moved when he hit it".  Okay....this is where I would have normally become really upset.  But I didn't.  I was extremely calm.  I wasn't even mad!

I got into my car, called my husband to let him know I was going over to the business of where the van was from (in the area I was already in) and to have him be on call in case I needed him.  I was there in less than 5 minutes.  The van wasn't in the parking lot, which meant they probably had no idea what happened.  I was correct.

I walked into the store, asked for the manager, got the owner and told him what happened.  Again through it all I was very calm.  I actually even said many times as he was apologizing to me that accidents happen and how I was happy he actually came to find the person whose car he hit.  The owner wasn't too happy with his employee, but was very pleasant with me.

I got his insurance information and gave him my name and number.  As soon as I walked into the door at home, his insurance agent was on the phone and everything moved along smoothly.  I have an appointment tomorrow at the body shop for them to look at my car to see how long it will take to fix the passenger door and the quarter panel.  Not only do I have an appointment, but the body shop which their insurance carrier uses is the place I get my car serviced.  And they will give me a loaner car....a car just like mine!

While it was a process when I got home (total phone time talking to everyone was 1.5 hours) everything went way better than I expected.  It was at this point, that I realized how calm I had been.  I never raised my voice, I never got upset, I was just calm.  It was refreshing.

It was also at this time that I realized my daughter's gifts she gives to me go further than the day she gave me the gift.  The gifts are always there.  They are there when I need them for strength, support, love, to laugh, to cry, to reflect, for comfort, or just a memory to make me smile.  The gifts are there for me from her to use in my life wherever and whenever I need them.

Her gifts are life changing and are gifts which keep on giving.

Here are two quotes for today....

Positive things happen to positive people- Author Unknown

You create your own calm- Author Unknown

© copyright 2012 – All rights reserved
365 Days Gift

Wednesday, July 10, 2013

A Full Sentence

Today's gift is a full sentence.

Well, it just seems like magic would happen today as it is my son's 6th birthday!  Though you would think he would get all the good vibes; however, I think some jumped off him and hit my daughter.

My daughter read an entire sentence OUT LOUD today!  She has been working on reading her sight words so hard.  Back on December 3rd, I posted that she was reading..and reading to herself too.   And trying to read the words out loud if she could.

Today, she did!  She read....

As soon as I came back from getting my middle daughter at camp,  I walked upstairs to see my daughter.  "Anne Sullivan" ran over with excitement and said she read an entire sentence today....on.her.own!  I immediately said, "let me hear it!".

So she read it for me, her sister and her brother!  We were all so proud of her!!!  I looked at her and said, "shut the front...." and before I could say "door", she did!   We all started laughing!  I love how she gets our sense of humor!!!

I then gave her a big hug and said "I love...." and she looked up at me with her big green eyes and said "me"!  Melt. My. Heart!

I do love her.  I love her so much sometimes it actually hurts.  Like this I am writing this, she is getting over a bad behavior.  She was tired from getting up early and was falling asleep outside on the porch.   I went to move her inside to take a nap as it is so humid and she didn't like all.  

After such an wonderful morning and early afternoon, it was sad to have to have a doozie like this.   But do not think that this behavior is going to make me forget about the magical moment we had as soon as we got way!  Nothing can take away those moments.  This is just an example of how a great day can take a wild turn and we just have to roll with the punches.

Behaviors come and go, but memories always remain in the heart.

Here is a quote for today....

Dreams fly on magical wings when you follow your heart- Author Unknown

© copyright 2012 – All rights reserved
365 Days Gift

Tuesday, July 9, 2013

Making Choices....One at a Time

Today's gift is making at a time.

It is really hard to wait for something when you really want it, isn't it?  I find this to be true with many things when it comes to my daughter.

First and foremost, I want a cure.  End of story.

That was the obvious one.   Looking back on her 6 1/2 years of living with Rett Syndrome (she is 11 1/2 and has been dx with Rett since 5) there are many "things" I wanted to happen for her way before they actually did.

I wanted her to be able to go to bed much easier and without us having to drive her around (took at least 2 years for the driving to stop and 5 1/2 for her sleep to improve).

I wanted her to be able to feed herself...with a fork (took 5 years) and drink from a cup which she holds on her own (took 3 years) and get a cup of water herself from the faucet (took 2 years).

I wanted her to be able to not scream (took 2 years) and for her behaviors to decrease significantly (took 5 years).

I wanted her to be able to swim...the best she could (took 6 1/2 years).

I wanted her to be able to navigate an iPad (or some sort of age appropriate technology) and this took 2 years.

There are plenty of things I wish she could do...just like her siblings or and play (alone with her friends), ride a bike, have sleepovers (AT her friends house), go to "typical" camp and play "typical" sports, talk back to me, etc....the list really is endless.

The one thing I really want is for her to talk to me.  Tell me about herself.  And we are still working on it!

As you know from previous posts we are working on her iPODD.  It takes time.  It doesn't happen overnight.  This is easier said, then done.   I wanted her to take to this new way of communicating immediately just like you would learn to brush our teeth.  But, asking this of her is not realistic or fair.   It is the equivalent of someone asking you to learn a foreign language and learn it immediately.  Not likely.

The speech therapist who taught us PODD said it could take 6 months to one year....for her to show consistent interest in her PODD book.   Repetition is key.  I know this.   I know this works with everything else we do with her, so why would this be any different?  It is not.

While she may not show interest every day, or every other day, but when she does she is spot on. Today, she expresses to her "Anne Sullivan" that she wanted to read a book...using her PODD.  Not only did she request it, but then went and picked up the book she wanted her to read!  Talk about communicating!

While the "gift" wasn't directly with me, it is still a huge gift.  It shows her using her iPODD the way she should.  It was natural and not forced!  It showed she made a was her choice and her's alone.

I know this road with PODD is a curvy and bumpy ride between learning all the symbols and learning the layout of the book.  It is hard for me too to learn all the pages.   I don't know why I expected it to happen overnight...maybe it is just because I want to know so much of what is inside her 11 1/2 years worth!

Even though we don't have days like today every day or every week that is okay.  What is important is that she hears and sees us using it while talking to her.  Our repetition is going to help her want to use it too and before we know it....just like everything she has learned through practice over and over again, it will click.  And then she will be "talking" up a storm.

Until that day, I will listen to her "talk" through PODD on the occasions she wishes to "speak" through PODD.

Here is a quote for today...

Never let the things you want, make you forget the things you have- Author Unknown

Monday, July 8, 2013

Catching Up

Today's gift is catching up.

The first day back from vacation is always the hardest.  Getting back to reality after being away takes a toll on all of us.  It took such a toll on me, I apparently was still operating on Central Time as I picked up my middle daughter 45 minutes LATE from her FIRST day of camp!!!

This morning, oddly enough my daughter was the first one up and ready to go at 5:30.  I was surprised as I thought for sure she would have slept in.  I guess she couldn't wait to see her "Anne Sullivan" this morning.

All day she was in a great mood, but as the day wore on she was starting to get a little sleepy.  I couldn't blame her as I was getting sleepy too!

Right before "Anne Sullivan" had left, my daughter had fallen asleep on the sofa.  She looked so peaceful I just couldn't stir her.  In fact she looked so comfortable I thought I would close my eyes for a little bit too!  And I did....and so did my son.  The three of us, including Midnight all took a little nap together.

It was the best and exactly what we all needed!  And I didn't feel guilty taking one as I had done everything I needed to do shopping, laundry, unpacking and putting away clothes.

Tomorrow is probably going to be another catch up day for my daughter too as she hasn't had physical therapy in a week, but I know she will handle it.  In fact, I bet she is actually looking forward to her stretches as I can tell she is tight from sitting in the car.

Maybe there will be one more nap in our future this week....I won't argue!

Here is a funny quote for today....

When life knocks me down, instead of getting right back up....I usually stay there and take a quick nap- Author Unknown

© copyright 2012 – All rights reserved
365 Days Gift

Sunday, July 7, 2013

Playing DJ

Today's gift is playing dj.

Well, after 2750 miles, 46 hours in the car driving, 10 meals on the road, 6 gas fill ups, 5 Starbucks stops, and unknown visits to Cracker Barrels across the southeast for potty breaks we are back home!  The last 8 hours of our 46 hour drive where in pouring down rain!!!

Through it all the kids were incredible, our visit was perfect and we have tons of wonderful memories to last us a lifetime.

Needless to say traveling by car is much easier for our family, especially our daughter.  She just loves to go for a ride and look out the window.  On this trip she was lucky enough to visit parts of Virginia, North Carolina, South Carolina, Georgia, Alabama, Mississippi, Louisiana, and Texas.  We drove two different routes so the kids could see more!

Just as much as my daughter loves to ride in the car she also loves to listen to music while she is riding along.   Don't we all?!?!  We all have different music we like to listen too depending on our journey and so does she.

She had the best time today playing dj in the backseat!!!!  We listened to a little Jack Johnson, Aly & AJ, China Anne McClain, LMFAO, Miley Cyrus, One Direction, Taylor Swift, Michael Franti, and I am sure there is more!  She also likes to dance when she listens to her music.

I enjoyed having her chose our music playlist during our drive today.  Sometimes it was the whole song and other times in was just clips.  Whatever it was, it was her showing us what she likes and we enjoyed every minute of it!

Here is a quote for today....
Music speaks what cannot be expressed, soothes the mind and gives it rest, heals the heart and makes it whole, flows from heaven to the soul- Author Unknown

© copyright 2012 – All rights reserved
365 Days Gift

Saturday, July 6, 2013

A Message

***If you did not see my post from Friday please go to as I posted it this morning. The title is "A First".***

Today's gift is a message.

Well, we started our 1300 mile journey this morning at 5:10.  We decided to take a different route home to show the kids different parts of the USA.

Our route started us on a Texas road which once you get out of the "bigger" cities you mostly see countryside. The countryside was beautiful, but along with the country comes not many choices to stop and eat breakfast.

After we drove through the town of Garrison, population 895, we hit a "larger" town...Timpson with a population of 1,171!  Would you believe it, we actually found a restaurant...a brand new Subway!  I honestly think it was the only restaurant in the town.  And I was happy it was clean!

When we pulled into the parking lot, there was only one other person dining inside.  It was a gentleman, who looked to be about in his 70's and probably a "local"... given the time!

My husband walked in first with my oldest daughter as I was investigating a rather large beetle in the parking lot with the youngest two.  Everything really is bigger in Texas...even the bugs!  When my husband walked in, the first thing the gentleman said to him was " I can see the spirit of God in her. You have something very special in your hands."

Your speechless....right!?! I was too when my husband told me!

It wasn't like this man witnessed us with our daughter for any length of time!  It literally, was just the two of them walking into Subway.

After we had breakfast, I took all the kids for a potty break and then brought them out to my husband, before it was my turn (mom's are always last!).  As I was leaving I told the nice man to have a wonderful day and he wished us a safe drive home.

When I got into the car, my husband was rather quiet.  Then he said "do you know what that man said on my way out....he said make sure you listen to her when she speaks".

Speechless again!?!

I see why my husband was quiet.  Those were two very powerful messages we received.  Two messages from a complete stranger.  Two messages that I honestly felt were given to us for a reason.

Looking back on our journey driving through the small towns of East Texas we were joking if we would even find a place to eat.   Little did we know our breakfast in a town of 1,171 would have had such an impact on our lives.

And yes, the man is exactly correct, we do have something very special in our hands and I couldn't be happier to call her my daughter!  If it wasn't for my daughter, we would never have met this man or heard his message as we would have flown to Texas.  I am a believer in everything happens for a reason, and apparently there was a reason we were given "a message" today.

Here is a quote for today....
Being a Christian isn't about knowing a set of propositions- it's about knowing Christ and acting on his behalf in the world- Francis Chan, Forgotten God

Friday, July 5, 2013

A First

***I apologize for not posting my blog last night. I completely forgot about it until I was in bed half asleep. We had to get up early to start our 23 hour car ride back home. I hope you can forgive me!!!***


Today's gift is a in she did something for the first time.

I know I mentioned in my post 'A Little Fish' that when my daughter has her aqua jogger off and my husband holds her up (horizontally) in the pool she will use her hands and kick her feet. This has been the only time she has come closest to "swimming".

Her aqua jogger is a little belt which goes around her waist. It does a great job of allowing her head to stay above water, but also letting her roam about on her own. She "swims" vertically more like riding a bicycle than swimming through the water. In the past two years she has figured out how to float more on her back with her aqua jogger on too.

But today...

She figured out how to get herself horizontal in the pool....with her aqua jogger on....and swim using both her hands while kicking her feet! We have never seen her do this. Yes she kicks and swims about...but as I said always vertical...never completely horizontal!

I am so proud of her for figuring out how to do this! And you can tell by the smile on her face just how proud she was of herself too!

Now that we know she can do this, we ask her to "swim" for us before she wants us to go "d" (down, under water) for her.

With repetition and lots of swimming I am sure before we know it this will be her "normal" swimming.

Here is a quote for today....

You've only got three choices in life: give up, give in, or give it all you've got- Author Unknown


***It is hard for me to post pictures while I'm gone. When I get home I will add pictures and video to all my posts. Then I will put links to them in another post. Thanks!***

Thursday, July 4, 2013

Meeting New Family and Friends

Today's gift is meeting new family and friends.

Usually when we travel we always meet someone new.  This is no different for our current trip we are on.

My children have seen more family in the last two months than they ever have.  Between my grandmother's 85th birthday party and now this trip to Texas.  While in Texas they have visited with their grandfather, grandmother, great-grandmother, two aunts, cousins and boyfriends. Of all these people, my daughter had never meet three of them before.

She loves meeting new people.  I love watching her when she interacts with new family or friends.  She says things in "her lingo" and I love to watch them try to figure out what she is saying. But the best part is watching both of them when they "connect".  She gets them wrapped around her little finger too.  She gets them to smile as her smile is contagious.  She lets them get a glimpse of her they want to learn more about.

This afternoon we were visiting with my cousins and meeting my cousin's boyfriend for the first time.  She just kept smiling at him and trying to get his attention.  It was so cute.  And then when they left we all went into the pool.  This was the first time my dad had all his daughters and grandchildren together!  And his son-in-law and my sister's boyfriend...and his mother.   We were all either outside by the pool or in it.

 It was a very happy moment for me to see everyone playing with each other and having fun.  I loved watching my daughter tell my sister's boyfriend "d" which means in you must go underwater. He quickly learned every time she said this to him, she wanted him to go underwater.  And she would belly laugh every time.

Just as much as it warms my heart to see my daughter interact with new family and friends it equally warms my heart to see them treat my daughter just like my other two children.  From a mother's perspective this is all I could ask.

Today was a fabulous fun- filled day.  One which filled my heart with lots of joy.  Family is important and I couldn't be happier for my children that they have so many family members who love them.  And who knows...maybe the "boyfriends" will be family one day too....and if so my daughter gives her seal of approval!

Here is a quote for today....

Family...we live, we laugh, we play, we love- Author Unknown

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365 Days Gift

Wednesday, July 3, 2013

A Little Fish

Today's gift is a little fish.

As I have mentioned once (or twice) my daughter loves to swim.  She is so happy when she is in the water.  My middle daughter summed it up best tonight...she said " mommy, she is free when she is in the pool ".

She is free.

Free to swim.  Free to move about where she wants to in the pool.  Free to be herself.

I love watching her in the pool.  She loves not having anyone be "on her" like when she is on land.  I'm not saying we are not watching her...we are...we are just giving her her space.  The space she deserves.
If you think about it my daughter has someone "on her" throughout her day.  Because of this she also doesn't have much (if any) privacy.  So her pool time is "her" time to herself.  Her time to think.  Her time to be herself.  Her time to be free....for a little while.

The pool is probably the only place she can roam and do what she wants.  She loves to explore every inch of the pool.  Today if she wasn't kicking a toy animal around at the bottom of the pool, she was feeling the current coming out of the jet or touching the water coming out of the waterfall.  Or she was just enjoying swimming and floating from one end to another.  On.  Her.  Own.

The one time we are on her in the pool is when we take her aqua jogger off and we let her swim.  She loves to be free without her aqua jogger.  But without it, we have to be on her.

When she was swimming with my husband today, she was kicking her feet on her own will and pushing her hands through the water.  This is huge, as her hands are usually always wringing!  The whole time she had a smile on her face...a smile that could have lit up the world!  She was so happy!!!
This. Makes. Me. Happy.

It is days like these which make me realize how much not only does she deserve days like today to be free, I need to see her enjoy days like these to make me realize these "free" days are important for her. Just like you and I need time to ourselves, she does too.  Just like her siblings roam the pool and do what they want...she wants to too.  She wants to be "free" and I pray one day very soon she will be 100% "free".   But until that day, her being a little fish is the only way to let her be "free" for a little while.

Here is a quote for today....

My heart sleeps by the sea- Author Unknown

Tuesday, July 2, 2013

Bedtime Conversation

Today's gift is our bedtime conversation.

As I was putting my daughter to bed tonight we both grabbed the covers and cuddled underneath them together.  The bed we are sleeping in at my dad's is really comfortable and you can't help but want to cuddle!

We talked all about our day..our day of pure leisure.  We talked about how nice it is to not have any place to be and to just play all day.  We talked about how nice it is to detox a little from technology...the kids have hardly watched anything on the tv or iPad until tonight as we watched America's Got Talent. We had a great time iPodding about it!  We disagreed on three acts and agreed on one.
We talked about how we called Poppy and sang " Happy Birthday" to him via FaceTime.  We talked about the videos we made.  We talked about getting fro-yo.

As we were talking a text came through from "Anne Sullivan".  She is vacationing this week too!  So we decided to take a picture and send it to her.  My daughter had the best smile as she loves "Anne Sullivan"!

I loved talking about our day and watching her face as we talked.  I can tell by her eyes and facial expressions which part of the day excited her the most.  Recapping our day together is a nice way to end the day too.  Talking about the day out loud helps you to remember all the little things, as well as, all the big things.

The best part of the conversation was watching her smile as she was looking into my eyes with her big green eyes...and then watching her eyes as they got heavier and heavier and heavier....until she drifted off to dreamland.  Sweet dreams honey...sweet dreams.

Here is a quote for today....

Do small things with great love- Mother Theresa

Monday, July 1, 2013

Adjusting to New Time Zone

Today's gift is adjusting to a new time zone.

Whenever we travel we always try to keep the kids on their normal schedule as much as we can.  There are times to "bend" the rules a little, but for the most part the kids do best when their routine is consistent.  Especially my daughter with special needs.

Since we are in Texas now, the time zone has changed.   We are an hour behind our time zone at home. To most this doesn't seem like a big adjustment.  To my daughter it is huge.  So how do you try to stick to your normal routine when adjusting to a new time zone?

You just play with it and adjust as you go.  We try to stick to the new time zone for the most part and she has adjusted very well.  However, the one time where we see her wanting to go back to her "normal" schedule is with bedtime.  When her "normal" bed'time' rolls around she is ready!
On the other hand, if she goes to bed on her "normal" time, then it means she will get up earlier on her new time. Which we don't want!

So we split the difference and push her back a little.

And she has adjusted great!  Hasn't skipped a beat!  In fact she even slept in this morning...which was great for both of us!

Traveling is always an adjustment for us in general, but throwing something new in...even as small as a time change is something "big" we must get used to.  While I am sure it is hard for her body to adjust I am so proud of her for adjusting so well.  I still get tired at certain times and know it is later at home, so I am certain she feels it too.  And as soon as we get 'used' to the difference, it will be time to drive back home!

Here is a quote for today...

Wherever you are, be all there- Author Unknown

Sunday, June 30, 2013


Today's gift is the 'pool' .

After being in the car yesterday for 16 hours all my daughter wanted was to go in the ' pool ' at the hotel.   It was late and we wanted to get a good night's rest before hitting the road again in the morning. My daughter loves the 'pool' and she didn't stop saying the word 'pool' until she fell asleep.
In fact she got quite upset over the fact she couldn't go swimming.  We kept telling her tomorrow once we get to Popo and Gamma's house.

Then this morning as soon as she woke up she started saying 'pool' again as she remembered she saw one last night.   We kept promising her she would go in one today....however it would be 6-7 hours. While she understood she would get to go in a pool today...the time in which she had to wait wasn't the best news.  Throughout our drive today, she said the word 'pool' and we kept telling her as soon as we get soon as we get soon as we get there.

As promised after being on the road for 23 hours in two days she got to go into the pool at Popo and Gamma's house.  She loves being in the pool.  She truly is like a little fish in the water.  She was so happy to finally be able to kick and swim around freely after the long drive.  She was in a great mood to say the least.  The 'pool' was incredibly refreshing after our long drive to Texas.

Now for the next few days when she says 'pool' we will be ready to jump in with her.  The 'pool' is one place she can tell us where she wants to is the one place she can roam freely and we are only an arms length is her happy place.

I heard the word "pool" many times today.  But it is one of those words I do not mind hearing over and over again as I know how much happiness pools bring to her.  Next to hearing her say the word "pool" is watching her swim in one!

Here is a quote for today...

Just keep swimming- Dory from Nemo

Saturday, June 29, 2013


Today's gift is "flag".

Well, we started our 1300 mile journey today to visit my dad and step mom (aka Popo and Gamma). Thankfully all three of my kids are super car travelers!  And because of my daughter with Rett Syndrome driving is so much easier for us.

Needless to say we took plenty of breaks to stretch our legs.  A couple of these stops were at different welcome centers along the way.  As you may know the welcome centers not only have the American Flag, but also the State Flag.  We saw FIVE state flags today!

My daughter loves looking at flags.  The first time she said the word "flag" she was in preschool.  Since then she will say the word when she sees a flag.  There are times when the cat has her tongue and she will not say the word, but will stare at them.  She loves watching them sway in the wind.

As soon as she saw the flags today she started pointing and saying "flag".  At one of the welcome centers my son picked up a bunch of local magazines to look at in the car.  Usually I don't like have extra 'stuff' in the car when we already have enough, but today I let him as they have to be entertained for 22 hours!

My daughter saw one on the floor in the car, picked it up and started flipping through it.  She kept pointing out all the flags and saying "flag" to her sister.

I was so proud of her for showing us something that she likes in a magazine and in person and using the appropriate word too!  While this gift may seem little or insignificant to you, it is big for us.  Seeing her communicate with her sister in the backseat the best she could was beautiful to see.  I love little moments like these which really make you appreciation the little things!

Here is a quote for honor of our American Flag...

The land of the free, the home of the brave- Francis Scott Key