It's Going to be Okay

Today's gift is it's going to be okay.

Do you ever have one of those days where you look at something that has just been "handed" to you and think....are you kidding me?  Really?  Today?

And of course the timing of those things "handed"  to you are never at the right time.  Either you have something planned and now have to cancel.  Or you already had a busy week with hardly any time to yourself and then this happens.  Or your husband is going out of town and you know you will have to deal with it alone. Or whatever other situation you can think of.

Timing of things is never really "right"...is it?  Sometimes it is or sometimes I find at the time the timing wasn't right, but later down the road when I look back at the the timing of something that happened the timing was perfect.   But usually the answer is never obvious...it always leaves me guessing one way or another.

When days like these happen, I just look at my daughter and think to myself...it's going to be okay.

And it usually is okay.

It is at times like these when I think instantly....what an inconvenience this is for me....but then I really have to think....is it really about me?  There is always a bigger picture.

Today I had one of those days.

And I just looked at my daughter and knew it's going to be okay.

When something happens in my day to throw in a monkey wrench, I often will look at my daughter for some comfort....

• I think to myself how would she deal with this...the way she is with Rett Syndrome and if she didn't have Rett Syndrome? 
• I think to myself wow, she deals with so much every single day and I am complaining about this.  
• I think to myself my daughter is an extremely strong person and she has made me the strong person I am today and....

.....it's going to be okay.

It is okay and will be okay.  Life will go on...just like it did yesterday, today and will tomorrow.  We may have extra baggage to deal with, but it's going to be okay!

Here is a quote for today....

Life doesn't get easier, you just get stronger-Author Unknown






© copyright 2012 – All rights reserved
365 Days Gift

The Little Things #9

Today's gift is the little things...#9.

My daughter was in a mood when I picked her up from school today.  It was a mood where I didn't know which way it was going to swing....get better or get worse.

I was hoping and praying it was going to get better as I never like to see her upset, but today in particular I need her to be in a good mood because she had her second chiropractor appointment.  After last week I was really excited and I didn't want to miss today.

I let her have "her space" when we got home and hoped she would come out of it...on her own.  She had some down time on the sofa and then walked into the kitchen still with her "look" and walked back over to the sofa.  I asked her if she wanted her snack and she said yes, with a smile.   I was hoping we were on our way to being in a better mood......and we were.

I don't know what it was because even after her snack she still wasn't 100% so I can't say she was hungry.  I kept trying to make her laugh to keep her spirits up so we could make the appointment.  I even called them to give them a heads up in case we didn't make it.

When I told her it was time to go and where we were going, she jumped right up and was eager to leave!  I think that is a sign she enjoys going...what do you think?!?!?!?

As soon as we walked into the office, they called us back and she was grinning from ear to ear as soon as she saw her doctor.  It was like she had been in the happiest mood all day!

I was so proud of her for pulling through and working through her "funky" mood.  I still don't know what caused it...maybe she was just tired.  However, ever since we stepped foot into the chiropractor's office today she has been all smiles.  I think this is a very good sign that she not only enjoys going, but it must make her feel better.  In hindsight, maybe I should have told her right when I picked her up where we were going....maybe then she would not have been in her "funky" mood.

Since she is of few words, I have to rely on her body language all the time.  If you know her well, you will be able to read a lot from her actions.  You know what they say...actions speak louder than words....

....and her ear to ear grin as soon as she saw her doctor explains it all!

Here is a quote for today....

Sometimes the questions are complicated and the answers are simple- Dr. Seuss



© copyright 2012 – All rights reserved
365 Days Gift

Trying a New Restaurant

Today's gift is trying a new restaurant.

Two days in a row of taking my daughter to a new restaurant....woohoo!

I remember the days we could not go out to eat.  Whether it was due to behaviors, not being able to sit still and be patient, screams and high pitch noises...we just never went out.  It also led to one of us leaving the restaurant early...which was not fun.

Then slowly we began to transition her going back to restaurants.  We would bring her electronics (back then her iPod), edibles, eat early (like 5:00...on the nose), and we would visit the same restaurant over and over and over again to get her used to going out.

As I have always said with everything we do with her repetition is key.

She became used to going out to eat to the point we were not only able to introduce her to another restaurant to be able to put a new one into our rotation, but we were able to slowly fade our "props" we needed in order to make it through the meal.

Fast forward to the present....today we have at least four staples we chose from in our rotation for restaurant choices...not including any fast food chains.  We do treat the kids to a meal out on the weekends often, so after a while our restaurant choices being to get old.

Yesterday I tried a new deli and as you read she loved it.  And I timed it perfectly too so it was not  crowded!  Today we took another chance and tried a new restaurant with the kids.  It was a new one for them, but not for us.  It actually is one of my husband's favorite bbq places so he was excited to introduce it to the kids.

They loved it!!!  Yippee...another restaurant to add to our rotation!

I am so proud of my daughter and how she has adjusted to trying new places.  She trusts us to help her overcome any fears of the unknown.  She trusts so so much, we do not need any reinforcements anymore!  How incredible is that!?!?!?!  She walks in and sits down just like the rest of us!  We took baby steps to get here, but every step was worth the climb!


Here is a quote for today....

Ever accomplishment begins with the decision to try- Author Unknown




© copyright 2012 – All rights reserved
365 Days Gift

A Day with My Girls

Today's gift is a day with my girls.

Last night my son told my husband he wanted more "daddy time" on the weekends.  Meaning more time with just him and daddy.  I am so proud of him for speaking up.

I "get it", trust me.

We spend lots of time with and doing things for my daughter with special needs.  She requires constant attention, where my other two do not.  So to them we are always with their sister.  And they understand why.  They are very aware and mature for their age; however, I get they need "extra" attention too. And we try to make sure they always have it, but sometimes we get caught up and it doesn't happen.

Thanks to my son, we decided today we must make it a priority to focus on each child over the weekend.  It is more about having "daddy time" though as they each get me individually during the week.

Today my husband took my son for three hours for "boy" time and the girls and I had "girl" time.
We had the best time together!  We went to the mall to do a little shopping, we went to the craft store and we went to lunch!  My daughter was incredible through it all.  I did have to think of how many places we were going to go to as she starts to show signs (gets swipey) when time is up.  I timed it perfectly as at the craft store she was started to get "touchy" with everything.

I took the girls to a new deli for lunch they haven't been too and they loved it.  A friend recommended it to me a while ago; however I just tried it a month ago and it has been in my rotation of lunch places ever since.  One of my favorite things about this deli is they sell true Italian Leaf cookies...just like the ones I grew up eating!  I bought three (one for each of us) as our special treat.

The girls loved them!  And so did I.  It has been years since I ate one and it brought back so many good memories.  I thought I would have to take my children back to Connecticut where I grew up to get some good Italian cookies!

Yummy!!!

I can't wait to have many more dates with my girls.

Here is a quote for today...
The love between a mother and daughter is forever-Author Unknown

Pride

Today's gift is pride.

This morning the 4th grade at my daughter's school had a recorder concert.  You remember those from your elementary school days?  I remember mine...let's just leave it at that!

Every year each grade does a concert.  I have to be completely honest and say I didn't know why my daughter was taking part in this.  Up on stage.

She can not hold the instrument.  She can not play the instrument.  She doesn't want it near her mouth.  Why was she going to all the practices and standing up on stage for the performance?  It didn't make sense to me.

Until today.

She wanted to be like her peers.  She wanted to listen and watch her peers.  She wanted to try.  She wanted to have fun.

before they started playing

She was so proud of herself up on stage.  Proud of herself for standing there for 30 minutes.  Proud of herself for trying to play the recorder.  Proud of herself for being there for her friends, just like they are there for her on so many occasions.

She was smiling and dancing...swaying back and forth as her friends played the music.  It was as if they were playing for her.  And she didn't care she wasn't playing the recorder.  In all honesty, she probably was thinking to herself she got the better deal!  I tend to agree with her!


The best part was her teaching assistant, her "Anne Sullivan", and how she supported her in this concert.  Not just physically in case she fell over due to her balance issues right now, but I mean emotionally too.  She wanted this to be a fun experience for her, not something she dreaded.  Her "Anne Sullivan" really wanted to see if she would try blowing into the recorder herself, but needed to find a way to get her to put her mouth on the instrument...as she didn't even want to do that.  So she decided to put marshmallow fluff on it as she she loves marshmallows.  Guess what?  It worked a little bit, but not much.  The funnier part was after she had the recorder to her lips, her lips would then be a little white from the fluff!  My good friend who I was sitting next to and I would motion to "Anne Sullivan" to let her know to wipe her lips off!  It was really sweet how tried to think of ways to get my daughter to want to try.  And she did try...and that is all we can ask of her.

If you had never met my daughter and "Anne Sullivan" before today, it would be safe to say you witnessed an amazing connection between to people.  You can see it in their eyes, in the way they speak to each other (words and no words), in their movements, in every step they take.  My daughter was having the time of her life up on stage...doing what she felt comfortable doing....with her peers and she didn't care what anyone thought.  And "Anne Sullivan" was there every step of the way giving her all the support she needed.

Seeing her smile and her dance on stage made me realize....this is what it is all about.  Having fun and not caring what others think.  Being proud of who you are and what you are trying to do.  My daughter was definitely proud of herself today....and I was too!

Here is a quote for today...

Take pride in how far you have come and have faith in how far you will go- Author Unknown

notice the white "fluff" lips?

starting to swing back and forth...her dancing

loves watching her friends

© copyright 2012 – All rights reserved
365 Days Gift

Space

Today's gift is space.

How many of you like your space?  Space where you can escape all by yourself with no interruptions? I know I like mine...whenever I can find it!

I like to just sit sometimes and enjoy the peace and quiet in my house.  With three kids, a husband and a dog it is hardly quiet around here.  And I enjoy when I can "escape" to someplace in the house for some "space".

This afternoon my daughter sat on a chair in my husband's home office/study which is in the front of the house.  She hardly goes into this room other than to walk in and walk out.  I thought she was just sitting there while my mom and I talked in the dining room and she would follow us back into the kitchen when we were done.

But she didn't...she stayed in the chair.

My mom left and I was getting ready to unload the dishwasher.  Before I started I walked over to my daughter to check on her and she was still sitting there.  I told her I was going to be in the kitchen if she needed me.

By the time I was finished unloading the dishwasher and cleaning up in the kitchen about 15 minutes had gone by...and my daughter still had not come into the kitchen.  It was at this point when I thought to myself....let her be.

She needed her space.  If she wanted to walk into the kitchen, she would have.  Obviously she wanted some alone/down time to herself.  Of all people who deserves it the most, it is definitely her!

I can imagine how she would want some "space" in her life.  Because of the Rett Monster she requires assistance and supervision all the time.  She doesn't know danger.  She really isn't too fearful.  She has a high pain tolerance.  Sometimes her walking is unsteady.  She cannot walk up or down the stairs unassisted.  She can not feed, clothe, or do basic activities of daily living by herself.  All of these reasons is why she needs someone with her...always.

I would want my "space" too if someone was constantly on me.  Unfortunately there are not too many instances when we can let her have her "space"; however, in her home there are more opportunities which present themselves...like today.

I was excited for her today that she not only knew she wanted her own space, but was able to enjoy her time alone.  I was equally proud of myself for letting her be....and letting her have this time to think, reflect, listen, relax...whatever it was she wanted to do at that time.  Sometimes I have to look at the situation and think....what would I want if the shoe was on the other foot?  And today, I think I made the right choice....she wanted her own space.

Here is a quote for today....

I think it's very healthy to spend time alone.  You need to know how to be alone and not be defined by another person- Oscar Wilde



© copyright 2012 – All rights reserved
365 Days Gift

Sleep

Today's gift is sleep.

If you have been following my blog you know in the past my daughter has battled sleep issues...not wanting to go to bed, getting up in the middle of the night and waking up early in the morning.

We have been in a good sleep pattern with her for a long time (knock on wood).  It is so refreshing for everyone to have a good night's sleep.  If she sleeps....we sleep.

However, in the past two weeks her "going to sleep" has been fantastic!  She is asleep as soon as she crawls into bed most nights.  Until you have dealt with a child who has had sleeping issues for years which included spending countless nights driving them around town to get them to fall asleep to spending hours in their room in hopes they will fall asleep soon....you don't know how incredible this is!

I think back on where we started with her sleep issues and just shake my head.  It was miserable.  It was exhausting.  It was hard on us as a family.  It was a part of our life I am glad that is over.

Having had experienced the bottom of the barrel when it comes to sleep issues, it makes us appreciate the incredible sleep patterns she has today.  Just as much as she needs a good night's sleep, we do too.

I love watching her fall asleep as her body relaxes and she drifts off into dreamland.  I would love to know what she is thinking as she falls asleep and what is dreams about.  I love how she doesn't have to fight her body anymore to fall asleep and she can just drift peacefully.  I love how she can truly get a solid night's sleep and doesn't have her body waking her up in the middle of the night.  I love how she can be refreshed in the morning....just like she should be!

A good night's sleep is the key to a good day.  Since her sleep patterns have been incredible her behaviors have decreased....significantly....amazing how that works!  School days are fantastic too!

Let me just end this post by knocking on wood, one more time and hope I didn't just jinx us by writing about awesome her sleeping is these days!

Here is a quote for today...

Sleeping is nice.  You forget about everything for a little while- Author Unknown


© copyright 2012 – All rights reserved
365 Days Gift

Growth

Today's gift is growth.

Being an advocate for your child with special needs is exhausting, sometimes frustrating and also rewarding.

For many in the special needs community around this time of year we start to cringe,  as spring means IEP and Eligibility meetings.  Trust me when I say....THEY. ARE. NOT. FUN.

This afternoon we had an hour and 45 minute eligibility meeting to determine if our daughter "qualifies" for special education.  Every six years they have to re-evaluate to make sure every student in special education still qualifies.  Clearly she still has Rett Syndrome...so she still "qualifies".  However, it isn't that simple.

Evaluating equals testing....which means in the past month my daughter has had four people perform tests on her over ten different days!  On top of her "regular" day!

Stop reading this now and give her a big round of applause!  Who wants to be tested PERIOD, let only for 10 days!

I think another reason "we", parents of a child with special needs, do not like these meetings is because it is a day (or days) of listening to what your child can not do, what is hard for them, and where they fall within assessment results.  No one wants to hear negative things about their child...no one.

Today was different.

While yes we heard what she can not do, we also heard more.  We heard from her entire team so much positivity.

Our daughter has taught so many people who work with her in the educational setting how to believe.  And she doesn't do it alone.  Just like Helen Keller had Anne Sullivan, our daughter has a special believer in her life too.  The bond the two of them share is priceless.  The bond and understanding between them is what makes my daughter's education a success!  The bond and understanding between them is what makes other's believe in my daughter.  I can tell you with 100% certainty that if the circumstances were different and my daughter did not have an "Anne Sullivan" in her life, the tone around her education would be different.

The common themes we heard today were:

• We, the parents, actively seek treatments and evaluations from doctors who specialize with children in Rett Syndrome to make sure our daughter is getting the most current, up to date intervention possible----you better believe it....we promised her we would never give up on her!
• Her social interaction has increased with both engagement and desire to connect since her evaluation six years ago---six years ago was the same time "Anne Sullivan" came into her life...coincidence....I think not!
• Her observations this time reflect significant growth with compared to past evaluations completed at school
• She has shown significant growth with social awareness and initiation with students and staff alike
• Her receptive vocabulary is strong
• She had 2 pages typed by her speech therapist of all she CAN do and how she has grown in the past 6 years
• At this time it is difficult to determine the degree to which Rett Syndrome, especially verbal apraxia and motor planning, is impacting her ability to cognitively process tasks and respond in meaningful ways

The last thing I wrote is HUGE!  Since they can not get the information out due to her verbal apraxia and motor planning and since they BELIEVE in her so much and KNOW there is so much she wants to say...they are saying the results of the test are incomplete.  They will not put a number they do not believe in!

My 11 year old daughter has truly touched the lives of every single person at her school in some way or another.  Today, one of the therapist was crying....crying....in our meeting telling me, my husband and her peers (all 8 of them) how incredible my daughter is and how amazing it is to see her progress and how far she has come.  She believes in her so much and once you truly do, your life will change.  Needless to say, my eyes were not dry either.  And she was not the only teacher/therapist in the room to get emotional talking about my daughter.  To hear how my daughter has not only taught so much to the staff, but her peers melts my heart.  I know her peers are learning so much from her, I just hope they realize what a gift she truly is giving them.

So while I do not like these meetings, today's was different as we saw her growth in so many areas.  We know she has grown as we are with her every day.  But to see and hear it from another's perspective makes you look at the whole experience differently.  Although her verbal apraxia and motor planning due to Rett Syndrome signficantly impacts her ability to speak and coordinate motor movements and responses, she works hard to communicate with eye contact and facial expressions, smiles, words/sounds and her iPad.  I think it is safe to say, my daughter gives it her all and will not give up and doesn't want anyone else to give up on her either! 

Here are some quotes for today...

A good education is the next best thing to a pushy mother- Charles Schulz

I am only one; but I am still one.  I cannot do everything, but I can do something.  I will not refuse to do something I can do- Edward Everette Hale

Excellence is the result of caring more than others thinks is wise, risking more than others think is safe, dreaming more than others think is practical and expecting more than others think is possible- Howard Schultz

© copyright 2012 – All rights reserved
365 Days Gift

Trying Something New

Today's gift is trying something new.

This afternoon my daughter added another doctor to her list.  This one is voluntary and was not a necessity.

I decided to try a chiropractor for my daughter.

There are many opinions out there about chiropractors....either you love them or hate them.  I have yet to find someone who is middle of the road.  But each person has to make the opinion for themselves and that is exactly what I am doing....for my peace of mind and for my daughter.

I will say I didn't jump on this decision overnight.  It has been on my mind for a while and I talked to one of my daughter's physical therapists who also has a daughter with special needs.  She shared with me her experience with her daughter and gave me the name of the doctor they used.  I of course want my daughter to be seen by someone who would understand her and the possibility of her getting upset...and I wanted someone who was understanding with the circumstances.

He was great.  He was understanding.  He was straight-forward.  He was patient.  He didn't try to tell me he would be able to "fix her" or "cure her".  He said he would try and make her more comfortable with adjustments and let's see how she does.

I am willing to try just about anything to help her be comfortable and pain-free.  I am willing to do anything to keep her moving.  Where is the harm in trying this?!?

She was fantastic!  As soon as he walked into the room she was all giggles and grins!  She was very cooperative and laid down nicely on the table.  She is so tense and tight it took her a couple of minutes to relax her neck and lay her head down, but once she did....she kept it down.  She let him do the adjustments and he could feel exactly what I told him in our consultation.  All the technical terms he used were the same her therapists were using.

Below are my "non medical" observations from her appointment:

• once she remained calm, head down, she was very relaxed
• as he was making the adjustments, at times she would look at me (I was on the floor at her eye level holding her hands) like...what was that...but also with a look in her eyes, that it felt good...felt right
• she always had a smile on her face
• she was in a "different" mood after the appointment.....

What I mean about a "different" mood is she was extremely happy....and loving towards me.  It is like if someone does something really nice for you and it made you feel good....that type of mood.  Which made me think and feel her adjustments, made her feel good.

It didn't stop there....her walking was better when we got home...not perfect, but much better.  So much better...she didn't want to stop walking!  This is huge!!  You know she must be feeling better if she didn't want to sit down.  And twice when she was standing WITHOUT shoes on she was flat footed...this hasn't happened in a VERY LONG TIME.

Overall, I am very happy with today's outcome...with his patience, her cooperation and her results from one adjustment.  We are going to try to go once a week for 4-6 weeks and see what happens.  If it helps her with her walking....than it is worth every second and penny!

Seeing her today after her appointment, it truly was like she had a different sparkle in her eye.  Even at dinner, she leaned over to me, grabbed my face, on her own and gave me a big kiss....out of the blue!  I think she was telling me....thank you mommy!

Here is a quote for today...

Don't be afraid to fail.  Be afraid not to try- Author Unknown





© copyright 2012 – All rights reserved

PT at Home

Today's gift is PT at Home.

When I first typed the title of this, I started laughing as I immediately started thinking in my head ET go home!  Seriously, did anyone else think this?!?!?!  Anyway....

As I have mentioned in some previous posts my husband and I are going to start doing home stretches with our daughter over the weekend.  Well today was day one.

Day one, because we tried yesterday and she was resisting and we didn't want to make her upset.  I do not want her home stretches to be a negative experience for her either so we stopped.  I did massage her back yesterday (after all who doesn't like a back massage!!!), but she would not let us stretch her hips.

Today was a different day.

She was such a good "patient" for us.  It is definitely a two person operation and I knew it was going to be hard holding her on the exercise ball as I have seen her therapists in action....but I didn't know it was going to be a workout for me too!  WOW!  We were both having a PT session...her's was more therapy (physical), while mine was more training (personal).

I was so proud of her for trusting us to help her.  We made it fun for her so she would not mind letting us work with her at home.  My husband would hold his breath and fill his cheeks with air and when she would reach over and touch his face, he would make a different noise!   She was laughing so hard.  She was stretching so well.  She had no idea she was working as hard as she was because she was having such a great time!

I know not all our home stretching sessions will be this "easy" and "cooperative", but I hope she will remember how fun it was and know it will be over before she realizes it....especially if she is having fun and laughing!

Here is a quote for today...

Surround yourself with only people who are going to lift you higher- Oprah



© copyright 2012 – All rights reserved
365 Days Gift

Her Name

Today's gift is her name.

I love the gifts which are short and sweet.  The ones that "just happen" when you are going about having a normal day.

This evening we took the kids and Granny (my MIL) out to dinner.  We were having dinner at one of our favorite, close to home restaurants.  The kids were coloring and playing games on their placemats while we were waiting for our food.  My daughter grabbed a crayon and was "coloring" her placemat too.  Then I flipped it over so we would have a blank piece of paper.

I asked her what her name was....and she told me.  Then I said let's spell it.  So she started rattling off the letters in her name.  Rattling them off....in order....with no hesitation!  And before we knew it all EIGHT letters were there!!!

She was SO proud of herself.   The look on her face was priceless....it was as if she was saying, "duh, I can spell my name"!

But we didn't stop there.  We then proceeded to spell everyone's name at the table!  As we were spelling them, she would look at the person too!  It was so sweet...and sincere.

She amazes me every day and so many of her accomplishments are all because one special lady believed.

We are forever grateful for her one to one teacher...her believer...her voice...her friend.  If it were not for this amazing woman in our daughter's life, she would not be where she is educationally and socially today!  Their motto together is to never give up.

And they both live by this daily!

Here is a quote for today....

Don't give up.  I believe in  you all.  A person's a person no matter how small- Dr. Seuss





© copyright 2012 – All rights reserved
365 Days Gift

Little Feet Meet

Today's gift is the Little Feet Meet.

Every year the Special Olympics does an event for the public school systems where the kids who are in the special education program participate in events like the olympics.  There is an opening ceremony and everything.

It is a day to honor all children with all different types of special needs.  It is a day where "our" children are the stars.  It is a day where there are no stares...no questions....just acceptance.  It is a special day for all involved....volunteers, athletes, teachers, parents, grandparents, friends, etc.

At my daughter's school every athlete is paired with a buddy.  A buddy who will help them through each event.  A buddy who is their...well buddy...a friend.   The whole school cheers them on before they leave.  My daughter came home with at least SIX posters made by her peers...her friends wishing her good luck!

Today my daughter participated in three events--she started with a run/walk, then a ball toss and ended with a jumping event.  She did great in all of them, with of course the ball toss event being her favorite AND best!

As I mentioned in my post yesterday her walking has become a bit "funky" so the run/walk was a challenge for her.  Half way down she stopped and her one leg started to shake.  What didn't stop was the crowd cheering her on....all the way till the end!  This event was hard to watch as she used to be able to run down the track with no difficulties.

The jumping event I think is her second favorite for two reasons- she loves to jump (in place) and her FAVORITE teacher (well 2nd favorite to her one to one who is just....well....amazing!!!) picks her up and jumps with her!

Throughout it all she had lots of smiles and giggles!  She enjoyed having her support system there and kept looking at us to make sure we were watching her.  I love how we make it a family tradition...our whole family cheers her on.  I keep both of her siblings home from school as this is a special day for their sister, just like a dance recital or sports competition.    I keep them home from school so they can support her, like she supports them.  I keep them home from school so they can see how hard their sister works and how there are many other children who have all different kinds of special needs.  I keep them home from school so they will be well rounded children.

Another special part of the day is seeing my other friends out on the field with their special child and their families.  I love how all of our children have different special needs, but this is one day they are all the same.

I think my little Olympian is going to sleep well tonight   She had a busy day participating in her events she has worked hard practicing with her buddy!  I loved seeing her shine on her special day.  The Little Feet Meet gives her an incredible sense of pride.  I know we know how incredible she is, but I just want her to know how incredible she is!

Here is a quote for today....

Let me win, but if I can not win, let me be brave in the attempt- The Special Olympics Oath

doing the run/walk

her cheering squad

my daughter and her buddy

playing ball in between events

ball toss

this smile says it all....this is her favorite teacher!!!!

getting another ribbon

such a special girl!!!

© copyright 2012 – All rights reserved
365 Days Gift

Pushing Forward

Today's gift is pushing forward.

Lately my daughter has developed some walking issues.  She is still able to walk; however, her walk is funky and she is leaning forward more and more.

It must be so painful for her to walk like this....if only she could tell me where it hurts.

I,  along with everyone else who works with my daughter, have been trying to rack our brains...why....why the change.  These are the answers we have come up with...

• she is having another growth spurt (happens all the time when she has one AND my other two children are having one right now too!)
• she is tiring more easily now (she does ALOT of walking at school....I mean ALOT)
• she is extremely tight in her hips and this is adding to the problem (they stretch her at PT, but she DOES NOT like it...but they still do it because of how tight she is...and it needs to be done)
• her scolosis
• the progression of Rett (she had a regression stage years ago...I think this option is highly unlikely)

Whatever the reason, we need to figure it out so we can help her push forward....and not regress backwards.

Well, today at PT (physical therapy) they stretched her....and I mean stretched her to the point, where she usually doesn't like it and will let them know it!    The part where it is uncomfortable for her because it hurts.  The part that has to happen to avoid future problems.  

She pushed forward.

She let them massage her till she was so relaxed she was drooling!  This massage was more of a deep deep tissue massage....the kind that hurts, but feels good.

She let me them stretch her sides and hips over a huge ball...you could see the stretching and knew it must be painful as she is so tight.

She let them do it all...without any problems.....without any whimpers....without any fuss.

She pushed forward.

And it paid off.

Today her walking was better.   After her bath I massaged her back and it was not as tight.  For the first time in months, her back was flat on her left side when she is lying down, where usually it is a little raised!  When we walked up the stairs tonight to go to bed, she did something she hasn't done- in a long time.  For the first six steps we have railings on both sides of the steps.  Tonight she held onto both railings...hands apart...and walked up the first six steps-ALL-BY-HERSELF!  Immediately, I thought....should we continue the railing on the right all the way up?!?!?!

I wish I could stretch her like they did today at therapy...every day.  However, I would need to grow another two arms, as it truly takes two people.  One is holding her on the ball with all their might and the other is getting her to reach for things to get a good stretch.  Looks like my husband and I have our homework cut out for ourselves on the weekends!  The extra stretching is going to help her AND make it easier at PT too!

It is amazing what one good physical therapy session will do!  I am so excited that she pushed forward today, when I know she wanted to pull back.  I think tonight she saw and felt a difference too!  I hope she remembers how good she felt tonight and will understand when we ask her to do it again...and again...and again.  She was in a great mood....and I know she just "felt" good too!  Sweet dreams little lady, you deserve it!

Here is a quote for today....

You are going to want to give up.  Don't.- Author Unknown

© copyright 2012 – All rights reserved
365 Days Gift

Being a Good Team

Today's gift is being a good team.

This morning my husband left for a work trip very early...before the kids were up....which meant the morning could be interesting for me.

You see I help my daughter in the morning...wake her, wash her, dress her, etc....while my husband gets breakfast ready downstairs.  When I come down he will feed her and have breakfast with all the kids while I am doing last minute preparations to get the girls out the door for school- on time.

This morning, as soon as he left my daughter walked into my room.  Five minutes later my son did.

All I wanted was to shower and get some coffee.  Lucky for me, my daughter was a rock star and laid in bed while I took a shower!  My son went downstairs and made his own breakfast!!!  When I went down to check on him and get my daughter's pre-breakfast medicine, I noticed my husband got the coffee all together for me so all I had to do was hit start....what a guy!  This made my day....thank you honey!!!

The rest of the morning went extremely smoothly.  I just talked my daughter through everything and explained she may have to wait a little bit longer when we get downstairs as I have to get her breakfast ready too.  She understood and waited patiently and was incredibly good.

We had such a fantastic morning that we were ready a whole 15 minutes before they normally are for school!!!!  Now this is with NO beds made in the house (I am a stickler when it comes to this) but it got done when I came home from dropping the girls off.

I hope tomorrow is another great morning, but it is also a PT morning so we have some flexibility on time!  Having mornings/days/nights like these make you truly appreciate how much an extra set of hands really help!   On the other hand, it is nice too to have some quiet time all to yourself when everyone is asleep.  Though if I had to take my pick....extra set of hands OR quiet time...I would go with an extra set of hands...I can always hide in a pantry for a couple of minutes!!!

Here is a quote for today....

Teamwork divides the tasks and multiples the success- Author Unknown





© copyright 2012 – All rights reserved
365 Days Gift

Her Love for Ice Cream

Today's gift is her love for ice cream.

Almost every child loves ice cream...right?!?  All three of mine do, as well as, my husband and myself!

I vividly remember the first time my daughter held her own ice cream cone.  I was pregnant with our second child and she was 2 1/2.   I snapped lots of pictures of her enjoying her ice cream.  I didn't care that she was getting messy.  I just loved how she was enjoying the moment.  Little did I know, something so little, would be taken away from her years later.

enjoying her first cone, 2004

getting a little messy with her first cone, 2004

Today at 11 1/2 she can not hold her own ice cream cone, but she still loves ice cream.  She can help you with her spoon to feed herself, but with a cone she needs assistance.

Also as she became older, milk products later in the day and evening started to give her problems.  After many trials, we realized for some reason she has a sensitivity to milk and cheese any time after 2:00 p.m.  If she is going to enjoy a pizza or ice cream we give her some stomach medicine and she is fine.

My son is also starting to develop some stomach related issues so I am constantly trying to find new foods for both of them to enjoy.  And I found it!

Ice cream made with coconut milk!  It comes in so many flavors...flavors they love - mint chocolate chip, cookie dough, cookies-n-creme....you name it!  And it is delicious!

The look on my daughter's eyes when I carried over a small bowl of ice cream for her dessert...at night...was priceless!  She was so excited to be getting something she loves so much....and at a time she rarely has it!

As soon as the last spoonful was gone she was asking for "more"!  I wish I could have given her more, but I also don't want to upset her stomach.  I think she went to bed extra happy tonight knowing she has a special treat in the house she can enjoy....any time of day!

Here is a quote for today....

Stressed spelled backwards is desserts.  Coincidence? I think not!- Unknown Author


© copyright 2012 – All rights reserved
365 Days Gift

Anticipation

Today's gift is anticipation.

My daughter is quite funny- she really is.  She loves to have you scare her...as in playing peek a boo or hide and seek.

Her newest game is where she wants me to say "boo" and scare her.  We look at each other and stare into each others eyes.  After a while I will start moving my eyes, eyebrows, nose, mouth and she will start moving different parts of her face too!  She will start imitating my facial expressions!

Her eyes keep getting bigger and bigger, as she knows the big "boo" is right around the corner.   When I say "boo" she literally jumps and starts to laugh....and then says "boo" as she wants me to do it again...and again....and again.

My favorite part about playing "boo" with her, is watching her anticipate what is to come.  Watching her facial expressions and trying to imitate mine after a while.  I equally love it when she asks for more...."more boo".

Something so little brings so much joy to her (and me)....ah....the simple things in life.

Here is a quote for today....

sometimes I think the potential of something amazing is the most exciting feeling in the world- Author Unknown



© copyright 2012 – All rights reserved
365 Days Gift

Letting Me Know One of Her Favorites

Today's gift is letting me know one of her favorites.

Wow, we were all tired after last night!  Thankfully we didn't have anything going on today so it was a low key kinda day.

When my daughter sees something she wants, she will continue to point to it...getting more and more adamant until you figure it out.  Today while I was in the pantry she was pointing to the candy bowl- the one we keep up high!  She was so cute about it, I pulled it down and let her have a piece.

I opened her little box of assortment of candies from Easter.  I had filled six compartments with my children's favorite candy (each one got their own).  I asked her which one was her favorite candy from the six choices.  My thought was skittles (as she always picks them out)....so I was extremely happy when she pointed directly to the skittles too!

I love it when my assumptions based on her actions are correct!  And she takes after her mom as skittles are one of my favorite too!

Here is a quote for today....

Life is short, eat candy- Author Unknown

© copyright 2012 – All rights reserved
365 Days Gift

First Concert

Today's gift is her first concert.

Tonight my husband and I took the girls to their first concert.  We went to see R5.  Don't know who R5 is, you might know their main band member and not know it.  Ross Lynch, aka, Austin from Disney's show Austin and Ally!

A part of me was nervous going into tonight as it was a night concert- as night time can be a rough time for her.  She works hard...every single day and by the end of the day she is done.  I was worried about it potentially being a late night, the noise level, the crowds and everything associated with a concert.   But I was willing to take the chance to have her experience her first concert.

On our way!

Thanks to my husband's firm, we had incredible tickets. We were in the VIP section, had a table along the balcony which looked right at the stage and had its own entrance.  These tickets were the reason we thought we could try a concert with her!

The stage

The Girls

I love how we captured another mother/daughter  in the background too!

We had no idea there were THREE opening acts for R5...and after each one I kept praying that she would make it to see R5....that she would make it to the end.

She was doing great...laughing, smiling, even dancing in her seat.  She was having a fantastic time!  It was wonderful to see her take part in a "typical" tween experience and to truly enjoy it!  I loved that we were able to share this experience with her!

Right when the first act came out....she started holding on to dad tight!

Taylor Mathews!  He was on America's Got Talent the year Jackie Evancho won!

Sunderland Band

R5...Ross Lynch (front and center)

Loving the show!

One of the opening bands kept coming up to the balcony and I "befriended" him quickly with one of my daughter's purple cards. I talk Rett Syndrome wherever I go!  His band, Sunderland, is from Oregon and they were really good!  They were the act right before R5 came on stage.  I asked him if her thought he could help me out and find a way where we could meet R5 after the show.  He said let me see what I can do and I will be right back.   And right back he was!

McKinley (in black) and Kyle (in white) from Sutherland

While we didn't have a "meet and greet", we were the first ones in line right after the show to meet them and get their autographs!  McKinley was incredibly sweet and I can not thank him enough for helping us get to the front of the line.  His willingness to help, really touched my heart!

And the time was perfect for two reasons!  One, my daughter ran into her two great friends from preschool (she was so happy to see these two girls...they are the most sincere girls!) AND more friends from school! Two, we were starting to see our daughter "teeter" and knew things could go down hill fast.  We were pulling out all the strings and praying she could keep calm until after we met R5.

My daughter, her sister, and her friends from her preschool years (and their siblings) with McKinley! 

(he has a card too)

My daughter and her sister and friends with Taylor Mathews...see her purple card in his hand!

The late night....was my biggest fear...at this point it was already 10:00pm - TWO hours past her normal bedtime!

We met R5 and she was great.  She gave them one of her Rett Syndrome Purple Cards from GP2C and they recognized them!!!  Thanks to another Rett family who saw R5 last weekend....they were aware of the card!  Ross Lynch, started to hand it back to us, thinking all the cards were the same, and I said no this is a different face, a different girl living with Rett Syndrome, and one of the other band members sitting next to him said (I think it was Ratliff), "yes, that is a different girl on the card"!  They kept one card and we had them all sign one of her cards for her.

Right when I gave them the card!

All of them talking to her....

Her autographed purple card!

At this point it was a quick...meet, have them sign something and move along....quickly.  While I would have loved to had time to take pictures of them with my daughter, I think this was better as we were losing her quickly as she was exhausted.

On our walk back to the car we were telling the girls how much fun we had with them and how AWESOME they were!  While my daughter was laughing (Dr. Jekyll) she was also very much on her way to having a behavior (Mr. Hyde).

We were in the car, on the way home and if a behavior was going to happen we were okay for it to happen now...with just us.  And it did happen, full swing.  As soon as we got home she was super upset and it broke my heart.

Here we had an incredible night and now the Rett Monster has to take over and show his ugly head.  This is how Rett affects us sometimes...this is our life with Rett.

The questions I kept asking myself....

.....was it worth this behavior to have her experience her first concert?    I say yes for two reasons.  One, how would I ever have known if I didn't try.  And second, she was fantastic at the concert and truly was enjoying herself as she loves music.

.....will I try another concert?  I don't know.  If concerts were earlier, probably yes.  But the time is the one thing that is hard for her.  Maybe next time we leave after a couple of songs and not push it to the end.  But even then it is still late and she is all about her routine.  So, honestly, right now, I don't know.

But what I do know, is that even though the Rett Monster had to show up last night, he can't take away our incredible memories from her first concert!  Her smiles, her dancing, the sparkle in her eye....no one can take away!

Here are two quotes for today....

I'll look back on this and smile because it was life and I decided to live it-  Author Unknown

Life is trying things to see if they work- Ray Bradbury