Rett Syndrome and the "bad days"

On a good day Rett Syndrome robs my sweet daughter of her ability to walk, to talk, to use her hands, to play, to sing, to color, to dance, to run, to swim, to hug or kiss her family, to grab a drink or a snack, to have any sort of independence at all.

 And THAT is a GOOD day.

 On a bad day (or, as the case is now, a bad 2 weeks) Rett Syndrome steals all of the above but goes a step further and brings on severe anxiety, unexplained pain, exhaustion, weakness that leaves my daughter unable to hold her head up at times, tremmors, long breath holding spells, poor appetite and screaming fits that last for hours on end.

Its pretty amazing what you can get used to.  I am so past the physical limitations that Annie has, they get me down once in awhile but not often, I know what a smart, wonderful, happy little girl she is and that's really all that matters.  But when the bad days hit it's hard to stay positive.  A couple days I can deal with, I love her through and she bounces back, we are even more blessed to see that happy smile after coming through some difficulty, but when the bad days start to out number the good and I can't fix anything, I feel quite sorry for myself and my sweet daughter that has to live this day in and day out.  I try hard to hold it all together but there is no break, no time out, no time off, it's constant, it's heart wrenching, it's suffering in it's worst form - in a child.  God, bless my Annie and bring some relief quick!

I saw this on a blog that I follow (www.spelloutloud.com) and it lifted me a little today.  I'm going to print on card stock, frame it and hang it in Annie's room - It's so true, even through the bad days He know's the plans for Annie.

A video for Annie

This is a video created by Mr. Daltons West Middle School 8th graders.  Words can't express how this video has touched my heart.  What a gift these children have given us.  Thank  you just doesn't seem like enough. 

If you are local please consider stopping by the Barnes and Nobels in Rochester on May 26 from 7 - 8:15 - we will be handing out flyers that will allow 10% of your purchases to go directly to girl power 2 cure for rett syndrome research! 

Closer to Love

5 years ago today I got the phone call that changed my life forever.  "you're daughter has tested positive for Rett Syndrome".  "God NO!  Not that one!" months of testing and searching for answers left us with the most devastating neurological disorder that had already stolen much of our 16 month old daughter and the nightmare had only just begun.  Our hearts will never be the same.  God in His infinite mercy has held us every minute of every day since that phone call, even when we had no business being held.  Because of all that is lost I have greater strength, and greater thanks for the blessings that surround me.  Annie has pulled me closer to love.  One day I will have her back.  One day I will hear her voice again.  I hold on to that hope and will fight tirelessly until then.  I thank God for every day He allows me to care for one of the most perfect angels the world has ever known.  I pray for His perfect time.  We are 5 years closer to a cure today.  

Annie walking through the years

I've said it before but it definitely needs repeating, Annie is the strongest little lady I have ever known!  A typical child may learn to walk by age 1.  James learned to walk at 15 months, Gracie it was about 13 1/2 months, and our sweet, persistent Annie has not yet met that goal but is consistently making progress each and every day towards this very difficult feat.  Here is a glimpse of her accomplishments:
At 1 Year Annie was standing and holding on all by herself!

 At Age 2 Annie was able to "walk" with a toy

and eventually a walker

And we started persuing intensive therapy programs

At age 3 Annie started using the theratog suit

 We continued to work relentlessly on Annie's walking:

 She had good days

 

And hard days

At age 4 we were able to fund intensive therapy and started the universal exercise unit and therasuit which helped Annie gain much needed skills and some pretty substantial muscle tone:

We then started the Lokomat - an intensive therapy that helped Annie start to bend her knees and gain stamina:

At age 5 Annie was able to get out of her chair and walk with assistance around a public place (like Chuck E Cheese!)

Annie continued to work on transitions and walking weekly during physical therapy at Beaumont.

We held Annie when she needed to be held,

and pushed her when she needed to be in her chair,

and helped her up when she wanted to be on her feet,

We will continue to cheer her efforts to walking independently but we will NEVER be too far to lend a hand whenever she needs someone to lean on!  

2011 Annie is now 6 years old, she is back on the Lokomat and will start another round of intensive therapy using the universal exercise unit in July.

Here is Annie walking today!

Annie walking with one hand

Annie we love you so much and have been blessed to be a part of your road to independence.  We pray and believe that you will be walking on your own soon but if that is not what God has planned we will spend the rest of our lives happily guiding you on the path that is chosen for you.  We love you beyond measure!  Daddy, Mommy, James and Gracie! 

but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.  Isaiah 4o:31