The Thrill of the Ride

Today's gift is the thrill of the ride.

Happy Easter! I hope you had a blessed day. I know I did!

The Easter Bunny surprised the kids with tickets to SeaWorld! I have to say it was one of the best family days we have had! Riding rides, watching incredible shows and everything in between- it was a whale of a time!

My daughter with Rett Syndrome hasn't been on a ride in years! While the main attraction to SeaWorld was not the rides, the kids still wanted to go on some. We all went on the Journey to Atlantis, very similar to Splash Mountain at Disney, but it has an extra "roller coaster" piece at the end! The picture at the end tells the story! I love our expressions! My daughter laughed from the minute we got on, till the minute we got off. She really liked it!

 

Since she had such a thrill from the first ride, I took her on a roller coaster, but not a big one. We used our guest assistance card (one of the only positives about having special needs...you never

have to wait in lines!) and went on her second roller coaster ever!  Again...loved it! I think she loves the need for speed as she enjoys going fast! She definitely likes the thrill of the ride.

I was so incredibly happy for her today as I know she truly enjoyed SeaWorld and had a blast! Tonight at dinner we went around the table saying what our favorite part of the day was and what our favorite ride- my daughter said riding the rides was her favorite (I believe it!) and the water ride ( Journey to Atlantis ) was her favorite ride. She didn't hesitate at all to let us know what she enjoyed!

I am going to bed tonight with a heart full of joy, love and lots of blessings! I couldn't have asked for a better Easter Sunday.

Here is a quote for today....

Life is like a roller coaster. It has its ups and downs. But it is your choice to scream or enjoy the ride- Author Unknown

A Little Lady

Today's gift is how she was a little lady.

My daughter was a little lady today! She was perfect all day long and acted like a true tween- a tween on a good day!

She had great manners, she listened, she was in an incredible mood- everything about her today was a real gift. However, one thing she did today is pretty new and she has started doing it more frequently.

Sitting with her legs crossed...like a lady! You know what I'm talking about -right? Not having your legs crossed at the ankles, but the knees. Multiple times when I looked at her today, she was sitting straight up with her legs crossed.

She looked so mature to me.

One part of me was like wow I can't believe how grown up she is getting. She really is almost a teenager (in 17 months!!!!). The other part of me was sad- as I wish I could keep her young...keep her as a little young lady where I could protect her forever.

I love the person she is becoming, I love how far she has come since her diagnosis of Rett Syndrome and I can't wait to continue on this journey of growth with her. However, I do wish I could slow down time and keep her a tween until research has proven a cure or treatment- in humans for Rett Syndrome. But since the latter isn't possible, I will continue to help her be the best young lady she can be!

 

Here is a quote for today....

I am not what I have done, I am what I have overcome- Author Unknown

Excited for Spring Break

Today's gift is she is excited for spring break.

My girls had a half day today and my son did not have Pre-K. When we picked the girls up from school my oldest with Rett Syndrome was super excited! She was in a great mood- saying lots of "mommy's"! I know she knows spring break started today and she has a week off from school. Who wouldn't be excited about no school-right!?!

I am convinced my daughter was acting appropriately about today starting spring break due to the fact she has been listening to her peers all week. She has been feeling the same level of excitement but shows it differently.

I am sure she is also looking forward to a break from school and therapies as she works so hard all week-extra hard than most. A break to her, is the same to you and me - a time to recharge the batteries!

I am excited to spend a week with my kiddos...having no schedules, no therapies, no to-do's...just a week of pure family time!

Here is a quote for today....

It was one of those March days when the sun shines hot and when the wind blows cold: when it is summer in the light and winter in the shade- Charles Dickens

A Little Possum

Today's gift is a little possum.

My daughter is funny. She truly has a sense of humor and knows when to pull it out. I love the days when I can look back at the number of times she made me laugh.

Tonight is one of them.

Sleep has always been an issue for her. Whether it is falling asleep or staying asleep...just sleep. However, the past year for sure has been great in this department...knock on wood!

Unlike most children, we have to stay with her until she is asleep...100%. We can not read to her and then leave...she will follow us out. It has always been like this and whether it is a habit we created or how Rett Syndrome affects her, it can't be broken. Luckily, she usually falls asleep now within two stories.

There is a science to leaving her room...as she is a light sleeper...but only when you are getting out of her bed! You have to inch out, body part by body part until you are completely out of her bed. It actually works the core muscles well when you are balancing either just on your tail bone or one foot!

You did it...you successfully climbed out of her bed. She is sound asleep and you can tell by her breathing she is in a good sleep. You start to tip toe away and BAM...she pops up and is bright eyed...smiling!

We call this playing little possum! It is a gift because it is funny....she is totally playing us and knows it. I'm laughing now...because she went right back to sleep. But trust me there are many nights when playing little possum is not funny.

Tonight is a night she leaves me laughing and I'm happy she got the last laugh!

 

Here is a quote for today...

A good laugh is sunshine in the house- Wiiliam Makepeace Thackeray

Her Hairbrush

Today's gift is her hairbrush.

Not so much the brush...but rather what she did with it!

Tonight while I was blow drying her hair, she picked up her hairbrush and handed it to me!!!

This is a first!

After the first time, she kept picking it up and then tapping it on the floor...with rhythm, as if she were playing the drums.  She had quite the beat too!

I took a couple of pictures.  The one that interests me the most, is the first one.  Even after she picks up "something" she is interested in, she still goes back to wringing her hands....as if her hands were being attracted together again by two magnets!  The whole time she is wringing, she still holds onto the object in her hand...pretty talented...and I would think kinda painful?!?

The next picture is her tapping the brush on the ground...to her own beat.

I just love how she handed me her brush in an appropriate setting and at an appropriate time!  You never know when life is going to hand you little surprises...

Here is a quote for today...

Choose to shine- Author Unknown



© copyright 2012 – All rights reserved
365 Days Gift

Worrying about a Friend

Today's gift is worrying about a friend.

Today was a PT (physical therapy) day.  As you know from previous posts, my daughter loves going to PT.

She did great today and she did everything they asked, but she was focused on a friend who also does therapy at the same time with a different therapist.  Her friend, was not in a happy mood, and my daughter was pretty concerned for her.  This was interesting for me to witness, as my daughter has never shown this side of herself....to this extent.

Usually, when someone is upset, she will be interested in them for a little while and either stop....or get upset herself.  Today, she was very concerned about her friend.

She kept looking over at her and if she was in a position to walk over to her...she would.

I love how my daughter showed sympathy and compassion today.  I love how she was worried and wanted to make sure she was okay.  I love how I was able to witness this level of concern she was having for a friend.

I sometimes wonder, does she worry if someone is upset...worry on the same level you or I would....and today I know the answer is yes....without a doubt.

Even though my daughter didn't get down on the ground and give her friend a hug, I know they understood each other's silence and "look" in each other's eyes.  Their lives are not easy, but it is nice to know they have a friend who completely understands.

Here is a quote for today....

I will never understand all the good that a simple smile can accomplish- Mother Theresa



© copyright 2012 – All rights reserved
365 Days Gift

Helping Around the House

Today's gift is helping around the house.

Even though we had a snow day today...life still had to go on.  Chores in the house still had to be done.

There really was no reason why the kids couldn't go to school today, but they called it last night...so it was too late.  Funny how all the snow days happen the last week before a break too!

I had tons of laundry to do today, as well as change the sheets on the bed and vacuum.   Since I had three extra set of hands around the house I put them to work too!

My daughter with Rett Syndrome loves to help where she can...and I know where she loves to help me around the house.   One of her favorites is actually with the laundry.  Whether it is putting the clothes in the washer/dryer or handing me the clothes to fold and sort.  Today, right after I took them out of the dryer they were nice and warm and I laid them on top of her.  She thought this was hilarious and she didn't move as the clothes were so toasty warm!

When it was time to vacuum she would help pick up things off the floor so they would not get picked up by Mr. Vacuum and then she would supervise.  She is a good supervisor too!

I could have let "my day" turn into a "snow day" too and not do anything that needed to be done...but we all know if I did that the rest of my week would have been "off" and extra busy.  So instead, I decided to make it a fun day of chores around the house...having the kids help too!  They love to help!

I'm so worried about things being done "my way" now and then, that I don't have them help me as much as they could.  But after today, I realized sometimes (ok many times) things don't have to be perfect and it is a better lesson to have the kids help then to have things look their best.

And it was excellent for my younger two children to see their oldest sister participating with us....if she can help mom....we can too!  We took this "snow day" and turned it into a "spring cleaning day"....after all it is Spring....isn't it!?!?!?!

Here is a quote for today...

The most memorable days usually end with the dirtiest clothes- Author Unknown


© copyright 2012 – All rights reserved
365 Days Gift

Watching Her Sleep

Today's gift is watching her sleep.

Tonight I knew my daughter would have an easy time falling asleep as she was going to bed a little past her normal bed time....which meant she would be tired.  We had dinner at a friend's house this evening and while we were there we received the email that there would be NO school tomorrow due to SNOW.

Yes...snow!!!  It is March 24th and we have snow on the ground.

It was my turn to put my daughter to sleep tonight.  I knew she was going to fall asleep while I was still reading the first book to her as she just had that tired look in her eyes.  And I was correct.  After the first book, I just laid next to her and watched her sleep so peacefully.

No hand wringing.  No anxiety.  No worries.

Just a nice, peaceful sleep.  She was so relaxed.  Her eyes would even flicker a little as she was drifting off into a deeper sleep.  I could even feel her body relax as she sank into the the mattress more and more.

I love looking at all my children when they are sleeping.  There is something beautiful about a sleeping child...and I don't mean that they are quiet!

I love watching her drift off into dreamland and knowing her little body is going to be so relaxed and free from her daily stresses when she is asleep.  A time when she can totally release all the tension in her body she carries around all day.  Tension from the daily hand wringing,  anxiety and working overtime from using the extra energy it takes her to complete simple tasks.  If anybody deserves a good night's sleep, it is her!

Here is a quote for today...

A mother's arms are made of tenderness and children sleep soundly in them- Victor Hugo






© copyright 2012 – All rights reserved
365 Days Gift

Bonding with Midnight

Today's gift is bonding with Midnight.

My daughter bonded with our dog today, but in a new way.

Usually she will let him sit next to her for a little while before she will pull his fur or ear...to which he gets up and moves. Today was different.

My daughter was on the sofa watching one of her shows and Midnight climbed up and sat next to her. He sat next to her for the longest time yet (at least 30 minutes) without my daughter doing anything to him other than resting on him! It was incredible to see! It was like they were buddies.

Sorry for the weird eyes on Midnight!

We have always wanted them to have a special bond and I think they are starting to form one...slowly...in their own way. I know Midnight realizes she needs extra attention as he has started to act more protective around her...in little ways. At the same time, I think my daughter is starting to realize how comforting he is to her.

To see them together today, made my day! I love that she has her own puppy now.  And I know they love each other too!

Here is a quote for today...

Happiness is a warm puppy- Charles M. Schulz

Story Time Shared with her Sister

Today's gift is story time shared with her sister.

My gift today, is short and very sweet.  Tonight when I was putting my daughter to bed, my middle daughter came into her room and asked if she could listen to the story with us.  I said sure.

Then I asked my daughter if she wanted her sister to read to us and she replied with a "la"...which is her yes.  So my middle daughter gave her sister a choice of two books and she picked the one she wanted her sister to read to her.

It was so sweet watching them share this moment together.  Looking back on when we started a family I never would have thought my middle daughter would be playing the role of "big" sister to her "big" sister.  I always envisioned my oldest daughter teaching her "little" sister so many things...like riding her bike, tying her shoes, how to read, how to count and everything in between.

While my oldest daughter is not teaching her little sister the "typical" things a big sister teaches her little sister, she is teaching her much more.  She is teaching her patience.  She is teaching her about unconditional love.  She is teaching her about believing.  She is teaching her about how to treat everyone, no matter their differences with respect and how we are all the same on the inside.  She is teaching her compassion, empathy and how to be sympathetic.  She is teaching her life's greatest lessons at such an early age.

Do I get sad when I think about the things my oldest daughter can not do with or for her little sister?  Absolutely.  Every day there are times when I think about it.  I get sad for both of my girls.

But then I think about how incredibly blessed I am that my two girls have the amazing bond they do share.  To see them interact with each other and to truly love each other means the world to me.  At the end of the day, it doesn't really matter who is reading to who.  What matters is that there is love, friendship and a bond between them, as this is something no one can take away....not even the Rett Monster.

Here is a quote for today...

Sometimes being a sister is even better than being a superhero- Author Unknown



© copyright 2012 – All rights reserved
365 Days Gift

The Little Things #8

Today's gift is the little things...#8.

I remember shopping with my mom at the beginning of each new season for clothes and being so excited to wear them!  I remember our shopping trips and trying on tops, bottoms and shoes galore....and wanting to buy...all of it!  I still do!

Shopping for my daughter is not the same as when I went shopping with my mom.  Instead of taking her to the store, I buy the items at the store in different sizes, bring them home and see which ones fit...if any.  Or I order them online and have them shipped directly to me...which is easier all the way around.

I miss being able to take her shopping....like I did and do.  Of course I take her to the mall, but it isn't the same.  Picking out what she likes is the easy part.  It is trying the clothes on which is difficult.

Remember my post about her picking out the swimsuits she wanted...well they arrived!  Tonight we tried one on and she looks adorable in it!  Not only did she look adorable....we tried it on...without her getting upset!

This is one of four she picked out!

To get to this point, it did not happen over night.

I remember trying clothes on her used to be more of a chore than anything else.  She didn't like it and would let you know.  I would try a bottom one day and a top the next.  It would takes days to try on a bag full of clothes.  It was not fun!  And many times she would end in a behavior.  She didn't like the constant transitioning from one outfit to the next.  It was too much for her.

Getting dressed is also physically hard for her.  She requires assistance getting dressed and undressed, and she is stiff (when she wants to be...and getting dressed is not a favorite thing to do...so she locks her body up...used too), making getting clothes on and off a little challenging.  I see why she didn't like it.

However, she still had to try the clothes on to get ready for the next season.

Today, I am happy to report the days of not wanting to try on clothes is OVER!  I don't know if it was the repetition of always having her try clothes on.  I don't know if it was the fact I started buying the same pants/shorts in different colors so she only had to try one pair on to see if it fit.  Same with the tops.  I don't know if she just decided she likes to try clothes on now.  I don't know....

Or it could be a combination of all of the above.

Whatever the reason, I am thrilled for her and me!  The last thing I want to do is make her upset...trust me.  And having someone who is not fighting you like an octopus to try on clothes makes getting ready for the next season more enjoyable.  Now if only the weather would cooperate....we are READY for SPRING!

Here is a quote for today...

All great changes are preceded by chaos- Author Unknown



© copyright 2012 – All rights reserved
365 Days Gift

Celebrity Crush

Today's gift is a celebrity crush.

Every tween, preteen, teen....heck...pretty much every age girl has some sort of celebrity crush.  Why would it be any different for my daughter?

It isn't!

As you know from previous posts, she loves looking at books, yearbooks, picture albums...so magazines are no different.  Tonight after my husband came home from work and ate his dinner, he walked outside to get the mail.  When he walked back in, he told my daughter she had a piece of mail.

It was her teeny bop magazine!  A dear friend who knows the love my daughter has for pictures, magazines and celebrities gave her a subscription for Christmas.  It was one of the best presents.  She truly looks forward to it every month and it brings her constant joy!

You should have seen the smile on my daughter's face when he walked it over to her showing her the center poster.  It was as if Liam, Niall, Zayn, Harry and Louis were walking straight to her!

She has always had the same celebrity crush on one particular band member and I wanted to see if it was still the same.  I asked her, "who is your favorite"....and she pointed right to him...with no hesitation!

Zayn!

She is so quick...here she is going to point to Zayn!

And here she is pointing to him...again!

In case you do not know which one is Zayn, he is the second from the right.

He has been her main pick since day one and things haven't changed.  Her desk at school has him hanging up in her work area, as well as, she has a poster of him in her room.

She had the best time flipping through the magazine tonight and pointing him out in pictures!  I love how even though she can not tell me verbally who she likes, I still know and understand her celebrity crush!  I was once 11 1/2 too...I also was into boy bands....I also liked looking at teeny bop magazines and filling my walls with their pictures.  I love how she can share a joy I too enjoyed during my tween years!

Here is a quote for tonight....

We wanna live while we're young- One Direction






© copyright 2012 – All rights reserved
365 Days Gift

Impromptu Snack Outside

Today's gift is an impromptu snack outside.


Right after school today I had to drive my daughter 45 minutes away to get her AFO ( nothing compared to a UFO...it is her leg brace) adjusted as her new brace was irritating her on the side of her foot.   I knew I was picking her up close to right after lunch, so I wasn't worried about feeding her a snack right away.  However, I did indeed bring a snack with me.

We were extremely lucky in that we not only made good time getting there, but also there was no wait! We went straight back and were seen immediately. He made the adjustments and we were on our way.

I was going to give her her snack when we got back in the car, instead of in the waiting room, so we could at least have the windows rolled down since it was a gorgeous day.  I knew we would not be having another 65 degree day for a while (according to the 10 day forecast), so I wanted us to enjoy all the Vitamin D we could!

As we were walking to the car, I noticed two picnic tables and a bench off to the side of the walkway. Have these always been there? I have never noticed them before, including when we drove past this area already today!

I pointed them out to my daughter and started walking toward the bench. We sat down, had a snack and soaked up some Vitamin D.  It was quite peaceful sitting on this bench, under a tree, listening to the sweet sounds of spring.  I did not have this part of our visit planned today...at all..but it was the best part.  It was extra special too as we got to share it with my dad (AKA Poppy).

My daughter loves being outside so I knew she would just love to sit on the bench in the sun while eating her snack.  Who wouldn't?  It is really nice to sit down and take in all the sounds around you, and take a deep breath before going back to the daily tasks which are always waiting for you.

Impromptu surprises, events, memories...whatever you want to call them, are the best...as they are not planned....and they have a great way of sneaking into your life when you need one too!


Here is a quote for today...

You are somebody's reason to smile- Author Unknown

The Laundry Game

Today's gift is the laundry game.

Whenever I do the laundry and my daughter is nearby, I always think of ways she can help me with a common household chore.

This afternoon during snack time I decided I had a few minutes to fold the laundry before my daughter would be up and about.  She was sitting on the sofa enjoying her snack and we were listening to music.  My son was also in the room playing on his iPad.

I wanted to engage my daughter in helping me, but clearly folding laundry was going to be a challenge for her and I wanted to make it fun...not work!  Instead, I would hold up an article of clothing and ask her who's it was...Mommy's, Daddy's, B's or E's.  She would tell me and then I would put it in the appropriate pile for that person.  She was having so much fun, that my son asked if he could play too!

She was spot on for who's clothing I was showing to her too!  Only one time did she get it wrong...out of a large load!!!  I was so proud of her!

Who knew doing laundry could be so much fun!  Now if I could only find someone to fold for me and I can tell them which pile it goes in!

Here is a quote for today...love this one...

Good moms have sticky floors, messy kitchens, laundry piles, dirty ovens & happy kids- Author Unknown






© copyright 2012 – All rights reserved
365 Days Gift

Quiet Time with Mom and Dad

Today's gift is quiet time with mom and dad.

I know my daughter loves her one on one time with us. We always try to make special individual time just for each child.

Tonight it was my husband's turn to put the younger two to bed and my turn to put our oldest to bed....every night we rotate. He was done putting his two little ones down, before I started putting my daughter to bed.

We were still in my room relaxing and cuddling and spending time together when my husband came in and jumped in the bed with us! Our daughter was nestled in between us and she got the biggest smile on her face!

We each grabbed a hand to hold and snuggled with her talking about the fun weekend we had and how she was so good all weekend. I asked her if she liked having alone time with just mommy and daddy and instead of saying "yeah", her smile got bigger and bigger. I think that is a yes for sure!

Our quiet time was no more than ten minutes as it was getting late, but it was ten minutes of pure one on one time which I know all my children crave. One on one time is so important and we try to make sure they receive it daily...a few times. It is not only good for them, but us too!

Having this special time with her was the perfect way to end the day!

 

Here is a quote for today....

If you want your children to turn out well, spend twice as much time with them and half as much money- Abigail Van Buren

Agreeing....Appropriately

Today's gift is agreeing appropriately.

My gift today...is short and sweet.

My middle daughter enjoyed the afternoon and evening out as she is at a sleepover birthday celebration. After we dropped her off my son asked if we could go to one of our family's favorite restaurants for dinner. We said we didn't see why not, but we had to run some errands first.

As we were driving around my husband commented on how nice it was in the car without the youngest two bickering about the littlest things...they are always annoying one another. Before I had a chance to agree, as the car ride was refreshing, my daughter responded with a loud "yeah"! We looked at each other and then said to her, "it is nice not to hear them argue over silly things isn't it". And she said, "Yeah" again followed by a giggle.

She knows how annoying it is too!

I love how she was listening so intently to our conversation and was able to voice her thoughts too...appropriately!

Here is a quote for today....

Let life surprise you- Author Unknown

Her Company

Today's gift is her company.

It doesn't matter what we are doing, I just love my daughter's company.

We can be...

sitting on the sofa, watching a movie, driving in the car, taking a walk, playing ball, swimming, reading together, eating dinner, or doing absolutely nothing and I love being with her.

I love listening to her say my name...over and over again. I love how she looks at me. I love how she snuggles up close to me. I love how she will throw one leg over mine when we sit next to each other on the sofa, giving me a sign she doesn't want me to go anywhere.

I love to look into her eyes and wonder what she is thinking...truly thinking. I love to listen to her giggle at all the right places when we watch her favorite movies. I love watching everything she does...just like she loves to watch me.

For some reason she stares at my nose! She was starting to give me a complex, lol! But lately, I honestly don't think it is my nose she is staring at, but my mouth. She is watching my lips move when I speak...watching to see if hopefully she can try and imitate me. Sometimes I will catch her making movements with her lips like she is truly trying to say something! I love how hard she tries.

Sometimes we have rough patches while we are in each others company, but all the good times take over the memories I remember. I am one lucky mom who has a daughter who loves to be in my company too!

 

Here is a quote for today...

Being happy doesn't mean that everything is perfect. It means you've decided to look past the imperfections- Author Unknown

 

Hand/ Eye Coordination

Today's gift is hand/eye coordination.

My daughter has incredible hand/eye coordination.   It is truly amazing.

We first noticed it years ago when she was playing with her favorite toy....a ball.  And we still notice it today.  It does not matter what size ball you bounce to her, she will always hit it right back to you!  Not only will she bounce it back to you, she can hit the ball back to you while looking in another direction....crazy!

So many times, like today, we will be bouncing/hitting the ball back and forth and she will be looking at the television while the ball is on its way to her and without looking will hit it right back to me!   She never misses a beat.

Equally as amazing as the above, she can also take a ball and through it at a certain target and get it every time.  For example, our kitchen chandelier is a favorite "target" as she loves the reaction she gets from it when the ball hits it...it swings!  When she wants to get our attention while she is playing with her ball, she will start throwing it at the kitchen light, as she knows I will respond.

Both of these skills amaze me because most of the day she is wringing her hands.  Unless she wants to do something on her own or she is asked to do school work, she is wringing them.  If I walk over to her and try to break her hands apart, it is as if I were trying to pry open an old rusty door that has been shut for years...it isn't easy.  And when I do finally get them apart, she is so strong she gets them back together quickly like magnets!  However, when she wants to use them, she frees them as quickly and easily as she needs to.

Hand wringing and how it pertains to my daughter will always be a mystery to me.  We are so lucky she has the functional hand use she does have and is able to use them purposefully.  Whatever it takes to get them apart is fine by me, as long as "it" is keeping her hands busy so she does not lose hand use.

Here is a video of her from 2011...she still plays with a ball just like this today; however, I do not have current footage.  I apologize for the video layout...it was a new phone at the time.  But the video is a great way to see what I am talking about...especially with her hitting the ball and then immediately going back to wringing her hands.

Here is a quote for today....

Where there is a will, there is a way- Author Unknown


© copyright 2012 – All rights reserved
365 Days Gift

Picking Out Her Own Swimsuit

Today's gift is picking out her own swimsuit.

It is almost "that time of year"...swimsuit season!  I love getting my kids new swimsuits and I try to get them early so the ones they really want are still available.

Today was the day I was having the girls pick out which ones they liked.  I pulled up the website on t he iPad, and showed my daughter her choices.  She took each one in and looked at them for a good while, before pointing to her selection.  The top with all the different patterns were in one box and the bottoms were in another box.

First she picked out which type of bottom she wanted.  Second, the pattern.  Third, the top...which I was interested to see if she would pick the matching pattern to the bottom...and she did!  I was so excited!

I think she was more excited that she had a say in choosing her swimsuit this year.  I asked her if we could try a new style this year too and she said yes.  So now with the swimsuit she chose, we picked out another bottom which will coordinate with the top she picked too!

This is not the color combination she chose, but the swimsuit!  Isn't it cute?!?!

Something so easy.  Something we take for granted every day.  Something everyone should have a voice in.  An opinion.

I try to always ask her what she thinks as often as I can, because I know she cares and wants to voice her opinion.  But I will not lie, sometimes it is easier to do it for her...and quicker.  Times like today, make me realize how much she truly enjoys telling me more about her likes and dislikes and I need to wake up and be more aware of her desire to do so.  It will take more time, but every second is worth it to know more about my daughter.

Here is a quote for today...

In the midst of winter I found there was within me an invincible summer- Camus



© copyright 2012 – All rights reserved
365 Days Gift

Power

Today's gift is power.

I know I have mentioned the unbelievable amount of strength my daughter has, but I do not know if I have ever mentioned the amount of power she has...as in force.

She is one strong girl.

It is quite fascinating to me how strong she is...honestly.  When you look at her she is tiny, but all muscle.   When I think about all the things she does every day...for instance wringing her hands with such force, it  doesn't surprise me she has biceps...with definition.  Or when she doesn't want to lay her head down all the way, it is like she is in a constant abdominal crunch...for over 3 minutes.  I think I would have abs of steel too....heck maybe I should try it!

As you know one of her favorite things to play with is a ball....any type (except golf balls luckily!)...any size.  Today she was bouncing the yoga ball around the house...dribbling it.  She would bounce it to her brother and he would bounce it back.  For the most part he was very gentle, but being a boy there were a couple of times I know he was trying to see if he could get it past her.

He used all the "power" he had and bounced the ball to her so hard, I literally thought she was going to fall over... (mom...as in my mom reading this...relax!).  Instead, she stopped it with ONE hand and laughed!  Which then made me laugh too...and she pushed it right back with just as much "power".  Luckily, they did not make a game out of seeing who has "the power" and went back to being gentle.

Not only did she show me her power today with the ball, but also at physical therapy on the swing.  This is where she is suspended on her stomach into the air and she has to hold onto the cord and pull herself front and back to get herself swinging.  It is a workout for her....but she does it...with ease!

And then of course there is the ninja power...which we haven't seen too much of lately...so I will save this type of power for another day...a day when our little ninja has visited.

Power, Force, Strength....and one unbelievable little girl who never gives up.  She is a fighter and I pray every night she wins this fight and is able to use power, force and her strength in areas she is not able to use them due to her limitations with Rett....like play tennis for instance one day.  Not hand over hand tennis...but a true game of tennis.

Here are two quotes for today...

Passion is energy.  Feel the power that comes from focusing on what excites you- Oprah Winfrey

There is power in positivity- Author Unknown

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365 Days Gift

Flipping Pages of Her Yearbook

Today's gift is flipping pages of her yearbook.

My daughter loves to look at pictures, magazines and books.  So it comes to no surprise that her yearbook would be right up there of things she loves to look at.  She loves flipping through the pages and finding her friends....and herself.

Sitting her down to look at her yearbook is one of the activities I can give her to do so I can either start dinner, blow dry her sister's hair or fold laundry.  It is a "quiet time" activity.  It is also another activity which keeps her hands moving!!!

She knows exactly where certain people are too in the yearbook!   You can ask her to point to someone and she will find them immediately.  It is also fun to see who she points to over and over again.  Sometimes I have to ask her sister who the student is, as I have no idea.  I often wonder why she is pointing someone new out to me....

Did they treat her well at school?  Did they say something mean?  Did she like what they wore?  Did they do something at school she wants to share with me?  The questions are endless.

What is a yearbook?  A yearbook is...according to google "An annual publication giving current information and listing events or aspects of the previous year, esp. in a particular field"...

In a particular field....like elementary school.  

It makes me so incredible happy to know she is utilizing her yearbook just like her peers....just the way it should be used....to take a walk down memory lane!  It makes me equally as happy to know she is represented in the school community and she has the happy memories to remember!

Here is a quote for today....

The best part about pictures is that even when the people in the photo change, the memory it contains never will- Author Unknown

Feeding Herself

Today's gift is feeding herself.

I know I have mentioned in the past that we are very fortunate my daughter has functional hand use.  It truly is a blessing.  Even though she still has some functional hand use, it does not always come easily to her.

This is why we are constantly trying to keep her hands busy so she doesn't lose this skill!

She has been feeding herself with a fork for a while now...though it took us a while to get to this point. By no means, do I mean she picks up the fork, forks the food herself and puts the fork into her mouth and every single step associated with feeding yourself.  Her "feeding herself" is picking up her fork I lay in front of her (with the food already on it) and she puts the fork into her mouth and then lays the fork down for another bite.

This is HUGE for her!  Actually this is HUGE for any girl with Rett syndrome really!  So I will say...this is her feeding herself!  

Of course finger foods are easy for her, but we always want her to be as independent as she can be.

It must have been the incredible weather we were having here again today, because her feeding herself at dinner tonight was on fire!  She was incredible!  Not only was she putting the fork back down for me  to get another bite ready, she was also telling me by pointing what she wanted me to fork!  And if I didn't get it right she let me know, by adamantly pointing to the correct item she wanted!

Our dinner this evening with Granny was a wonderful!  The food, the company, the conversation and seeing my daughter feed herself like nothing was holding her back was a perfect way to end the weekend! 

Here is a quote for today....

Out of difficulties grows miracles- 1 Peter 5:10

Fun in the Sun

Today's gift is fun in the sun.

Spring is in the air and I don't think anyone could be happier than my daughter. She definitely is a warm weather person as she does not like the cold. Not only does she love warm weather, she truly enjoys being outside in the fresh air.

Today it was gorgeous outside and my daughter played outside for a good portion of the day. She is a different person when it's not cold outside. She is more relaxed and happier (and she is a pretty happy person). Seeing her run around outside, swinging, playing ball with the dog and her siblings, laughing, and walking brought the biggest smile to my face.

Whenever my daughter is having fun in the sun...whether at home or at the beach, I think it is one of those times when she tries harder to overcome the Rett Monster. The Vitamin D she gets from the sun, must give her the extra strength to push on as nothing holds her back when she is outside!

I wish we could live someplace where the temperature was warmer all year round as I know it must make her feel better in so many ways. I can tell during the winter months she might be uncomfortable sometimes as it takes her longer to get moving and do things which usually happen with ease. While she can not tell me if she is achy or if her bones/muscles hurt, I know warmer temperatures make her feel so much better. Her whole disposition is better. I think she may get the winter blues like many of us do!

I'm so happy spring is around the corner...followed by summer. We have had a very cold winter this year and I know my daughter is ready for it to move on! She woke up smiling and went to bed smiling....that is a sign of a great day!

 

Here is a quote for today...

Live in the sunshine, swim in the sea, drink the wild air- Ralph Waldo Emerson

 

Greeting Someone at the Door

Today's gift is greeting someone at the door.

Friday in our house is music therapy day.  My daughter loves music, so it comes as no surprise that she loves music therapy.

While we were waiting for the music therapist, my daughter kept going by the front door, as she knew she was due to arrive at any minute.  After one of her runs by the front door, she came to the end of the hallway which looks into the kitchen, looked at me, and then pointed to the front door.

Adamantly.  With purpose.  She definitely was telling me something.

She sure was!  She was telling me she saw the music therapist out front getting all her goodies out of her car.  I love how she can get her point across when she wants to by using her pointer finger.

I love how she could tell me today someone was "here", even though she didn't say, "mom, someone is here".   I love how even through very few words, I understand her.  I love how she communicated with me purposely.

As they say, actions do speak louder than words.  Today, she proved it!

Here is a quote for today...

People may doubt what you say, but they will believe what you do- Author Unknown

Look Mom...No Cavities!

Today's gift is look mom, no cavities.

I think you can guess by my title, my daughter went to the dentist today.  She was a such a good patient...and I have to say this was one of her best appointments.

I always take my dad or mom with me when I take my daughter to the dentist.  I never know if I am going to need the reinforcements of an extra set of hands or not.  When my daughter goes to the dentist it is a different experience from when my other two children go and probably the way your child goes to the dentist too.

For starters, my daughter's anxiety level increases as soon as we walk into the dentist's office.  You can see it in the intensity of how she wrings her hands.  And it only increases once we get back into our private room.  This is usually a room they would perform filling a cavity or doing an extraction as it is out of the way, in case the person in the room becomes unhappy.

She isn't the only one sitting in the examine chair....I am too!  I sit down first and then I put her between my legs.  I need to hold her still while the dentist does her dental examine and this is the best way I can make sure her third arm isn't going to come out giving the dentist a surprise.

Once we are all seated she starts looking all over the room wondering what is going to be going on.  I know she knows she is at the dentist, as she never forgets a face.  But I also know she still gets anxious. Luckily there is so much to look at in the different exam rooms, I try to take her mind off what is to come.  Today, I also explained to her that he was going to be counting her teeth and checking for cavities.  I even went as far as to put my hands into her mouth, hoping she was not going to clinch down on me!

And then the dentist walked in.

She starts looking from side to side really fast...looking at the dentist...and then the assistant....the dentist....and then the assistant.  When it was time for her "exam", I place one hand on the top of her forehand, keeping her head steady against mine and my other hand on top of her two hands so she doesn't try and give the dentist a nice bop.  Within minutes my hand which is holding her hand is sliding off her hands due to the fact her hands are so sweaty....from being nervous.  But other than that...she was the most still she has been I think ever!

I was so proud of her today!  I don't know what it was.  I didn't even have to break out my singing...lucky for them, right!?!  She kept her head still the entire time too, which usually becomes a little wiggly!

And the best part....she has no cavities and we are to keep up the good work!

I hate how she gets so anxious when she has to go to the dentist every six months.  I wish she could enjoy the experience like her siblings of getting the "cool" sunglasses to wear so the bright light doesn't shine right into her eyes, of a "typical" cleaning, of going to the prize bin and picking out a prize for being a super patient (the prizes are nothing she would be interested in....trust me...and I think her "prize" is getting out of the office!) and being able to relax herself and know everything is going to be okay.

Just like everything else we do for her, I truly believe the repetition of going every six months and seeing the same dentist, has truly helped us get her to the place where she is starting to be more and more comfortable when she gets her teeth cleaned.

Having fun and trying to "relax" while we wait for the dentist to come in!

Here is a quote for today I found and thought it was funny....
Keep calm and don't bite the dentist

Fun Snow Day

Today's gift is a fun snow day.

We didn't get the call until 6:30 (ish) this morning that school was closed.  My kids get up early...so they were already up for the day.  However, my daughter with special needs had fallen back to sleep (since she was up at 5:00) and I had just woken her up to give her her medicine she takes before breakfast.

I couldn't believe it...she could still be sleeping...

When I went in to get her up to bring her down for breakfast...at our normal time...she had fallen back to sleep.   I was so excited (and jealous) for her!  At least someone could take advantage of sleeping in.

The kids and I had a pajama day.  It was also a day where we would be helping each other out too and they knew this included helping me out with their sister.

I remembered around 10:00 that I had defrosted a pork loin and I wanted to try a new crock pot recipe. In order to get it in the crock pot, I was going to need the help of all three of my kids...the oldest one to listen and play with the younger two and the younger two to entertain their sister.

Not only did they play well with each other...they did so for an hour!!!  I love when they play with her...they will not do things she wants until she tells them verbally if they know she knows the word.  I think they are tougher with her sometimes than I am!

They were playing so nicely with one another I not only got dinner in the crock pot (it was delicious by the way!), I also made them apple cinnamon muffins for a morning snack!

Dinner!

Here are some pictures I took of them playing with her in the playroom.  She had to count to three and then say "go" and their name in order for the other one to push the chair off the sofa...which prompted a laugh out of my daughter!  Before this game, they were playing pass the ball...and saying a name and then bouncing it to that person.

Here is a video of the action too!!!

My oldest daughter is just like me...a sun bunny...so she and I stayed inside today, while my youngest two definitely earned play time in the snow.  While they were outside playing in the cold, we were cuddled up by the fire, watching Charlie and the Chocolate Factory (the original version), playing games and making hot chocolate for her siblings when they came in!

Snow days don't always have to be about the snow...especially in our house...but we enjoy them nonetheless!

Here is a quote for today...

Laughter is timeless, imagination has no age, and dreams are forever- Walt Disney

Her iPad

Today's gift is her iPad.

Just like any other 11 year old my daughter loves her iPad!  Actually, just like any child my daughter loves her iPad.

Whether it is looking at pictures of her family and friends, listening to music (One Direction, Jack Johnson, soundtrack to Soul Surfer and China McClain from Ant Farm are her favorites), watching episodes of Hannah Montana, playing games (like Cake Doodle), or using her Touch Chat software to tell us something....she loves being on her iPad.  It truly brings her so much joy.

And it is great for me too...obviously the most obvious reason is for her to communicate with us.  But it helps her be occupied so I can get dinner ready or do something else around the house.  If you read my post from the other day, you know she can be the energizer bunny.  When she wants to be engaged on her iPad she can and will be for a long time.

I also love watching her and listening to see what she finds interesting.  I love how she will pick a song and then continue to navigate her iPad to another app and then will go back into music to switch the song.  When you watch her do this....you think...apraxia...what apraxia?  How can she do this with such ease, when other tasks using her hands are difficult for her?

Tonight I needed her to be engaged with her iPad so I could get dinner rolling.  Early in the evening she was very active and I was having to ask my other two children to help out...which they always do.  Thankfully tonight she was into her iPad and I was able to get dinner made without any issues (and it was a great dinner if I might add...a keeper!)

And she did a first all by herself with her iPad!   Earlier in the evening my middle daughter was helping her FaceTime me in the kitchen on my cell phone.  They wanted to know when dinner was going to be ready.  Then about 10 minutes later they were FaceTiming me again.  I called to my middle daughter and said, I can't FaceTime, please come in here and tell me what you need.  To which she replied, "I am not FaceTiming you."  My other daughter was!!!!

I could not believe it....and I answered it immediately!  She had FaceTimed me....but I don't think she knew she had.  I was talking to her and she was looking at me....and then she got up.  I think she was a little confused too because she could hear me (as I was only in the next room over) so she probably thought she would just come see me.  Usually when we FaceTime someone they are not in the house at the time.  I would be confused too!

I love how she can use technology like an iPad just like her peers.  I love how she can be engaged with something for a period of time, to allow me to get dinner ready.  I love how tonight, when I looked into the family room, my three children looked like a "typical" family.  If you didn't know my story, would you know one of my children had special needs?  Would you be able to pick the child with Rett Syndrome out?

And since she is the "energizer bunny" you will notice shelves and tables do not have much on them...for she is also known as "swiper".  I learned many posts ago...to just not let things like that bother me anymore....it is what it is! 

(the sign on the playroom door is from my son to the dog, telling him he is not allowed in the playroom!)

I love how she amazes me....every...single....day!


Here is a quote for today....

Sometimes superhero's reside in the heart's of small children fighting big battles- Author Unknown

"E"

Today's gift is "E".

My daughter says "e" all the time.  And I wish I knew what it meant.

Some think she is calling me, by my first name as it begins with an "E".  Some think she is calling her brother's name as his name begins with an "E" too.  I don't think so.

I am at a loss.

Today it is a gift because she said it constantly and saying it brought her much happiness.  I wish I knew what "e" meant...what it stood for...

I asked her if she was saying my name or her brothers and she didn't respond.   If it was a yes, she would respond with a "la" which is her "yes".  But I didn't get a yes.  I got another "e" followed by laughter.

I can't help but smile too when she says it, because she says it with such excitement in her voice....it is impossible not to be excited with her.  Hey, maybe that is what "e" means...she is "excited" about something.

I hope one day she will be able to share with me, what "e" really means.  In the mean time I will keep trying to figure it out and listen to the sweet sound of her voice when she says it.

Here is a quote for today....

Just don't give up trying to do what you really want to do.  Where there is love and inspiration, I don't think you can go wrong- Ella Fitzgerald

Lazy Day Together

Today's gift is a lazy day together.

We had a family lazy day today...and it was great! I love lazy days! Between the cold weather and having had a late, late night out ( wow, my body does not bounce back after a late night out like it used to!) and my daughter with special needs waking up 3 hours after we went to bed....a lazy day was the answer.

Luckily, my daughter fell back to sleep...in our bed and slept in in the morning. But let me tell you, there was nothing productive about our day...(well, I did finish a book I was reading!).

I love how we did not have to be someplace at a particular time, I love how we were all snuggling in one room together (even the dog) having true family time filled with laughs, I love how there were silent moments too where you could reflect and take a deep breath, I love how we were in our pjs all day (ok...3 out of the 5 as my husband went to get milkshake treats for all of us from Cookout...if you never had them, they are incredible!) and I love how we could be lazy today.

The kids enjoyed it too. My daughter would snuggle any time, any day...but hearing my son say how he just loved having snuggle time and being lazy with me today was worth it too! My middle daughter's favorite part of the day was cuddling under the covers after eating our milkshakes as we were cold!

We ended the day watching one of our family's favorite movies, Soul Surfer. This movie is so uplifting and inspiring, it just leaves you feeling like you can do anything. So after a non productive day, but one filled with relaxation and after watching the incredible movie I am ready for the week to begin! Sometimes we need to put the brakes on and do absolutely nothing...and today was that day!

Here's to a great week!

 

Here is a quote for today...one of my favorite lines from the movie Soul Surfer.....

I don't need easy, I just need possible.

Tickle Monster

Today's gift is tickle monster.

Have you read this adorable book? I think it is one of my favorite books my children have now. I remember being tickled as a child, just like I tickle my children today. I think the best part of tickling them is hearing their sweet laughter. The laughter that comes from a tickle is like none other...especially the deep belly laugh.

My daughter does not laugh when she is tickled...it is like she is not ticklish. Not on her belly, above the knee, under her arms, under her chin, on her feet...no where. My other two children start squirming just at the word tickle.

I often wondered if tickle to her was just like pain...as in she doesn't experience it on the same level as most.

Until yesterday and today.

We tickled her while we were playing around and the sweetest giggle emerged! A giggle we haven't heard before...a giggle with her eyes squeezed shut like she was anticipating the next tickle...a giggle we have longed to hear from her!

Here is one of my favorite parts of the book...does it bring back memories from when you were a kid or memories of you tickling your children?

For my crowning achievement I' ll tickle your toes, and your elbows and your knees, your neck and your nose. And your earlobes, eyebrows and your chin quite a tally, I'll tickle them all for my big grand finale! - excerpt from The Tickle Monster by Josie Bissett

Regrouping

Today's gift is regrouping.

Today's gift from my daughter is more of an eye opening experience of how something comes so easily to me, but to my daughter it does not. Not that this was a news flash, but it made me see things differently.

This afternoon my daughter was all over the place...up...down...and all around. It is from times like these where she got the nickname the energizer bunny. She was nonstop and it was truly exhausting to watch...and be on her.

When she gets like this, she can not regroup like you or I, rather she needs help. She needs someone to sit her down on the sofa...sit next to her (sometime with a leg on her to keep her still or in her body soc for some pressure) and help her calm down.

When we get like this, we know we need to calm down and relax and don't need assistance in doing so.

I sometimes get so frustrated with her when she gets like this, but today the experience hit me differently. I always know she can't help it...but it was like the three ring circus today hit me head on and the light bulb went off!

I always help her to calm down when she gets like this, but today it was the fact of how she can't regulate her body...on her own...to even start to calm down that hit me head on.

So instead of waiting and waiting and waiting for her to try and calm down on her own, I intervened sooner to get her to regulate before I lost my mind. And it worked!

Where have I been, right?

I guess since I am always trying to get her to do things on her own, I was always waiting for her to do this too. And maybe she will one day, but in the meantime, I will continue to redirect her before the energizer bunny takes over!

Here is a quote for today....

Holding hands is a promise to another, that just for a moment, the two of you don't have to face the world alone- Author Unknown