Thursday, September 1, 2011

There's Freedom in Release

I recently notice a friend's facebook status update "There's freedom in release...".  This friend has a child with special needs and although she didn't specify the situation my mind could only imagine the different possible things that she may have had to let go...dreams, expectations, a fight for inclusion, or maybe it was not even related to her child but something personal.  Whatever the situation, her update made me think specifically of the dreams and desires for my child I've had to release.  I have to let them go (kicking and screaming) and start revealing in the possibilities.  

Grace has been taking piano lessons since last October.  Because of the affects of cerebral palsy in her upper body, her arms, hands, and fingers are affected.  Not severely, but her movement is limited.  I had been searching for something that she could get involved in...something that was not therapy related.  We have a piano (I play), she loves music...then piano it is.  I had this vision of her walking up to the piano and changing people perceptions they had formed of her because she has CP as she begins to play beautiful music.  (Honestly I don't know if this would be her dream) She has enjoyed her classes which have mainly been learning music theory. She has yet to play anything recognizable or even play using her entire hand.  We had taken the summer off from piano lessons and I had decided to start up again.  This time she and Sophia would be taking from the same teacher, back to back lessons.

As I sat through her lesson this week, as hard as I fought it, I realized that this was not the time, and it may never be the time for her to take piano lessons.  It's just to hard right now.  She can tell you the beats to each note and tell you what a treble clef looks like, but she can't make her hands move along the keyboard.  It has also become more difficult as I watch Sophia excel and Grace barely able to peck out middle C.  So as I drove home from piano lessons, near tears, I let it go...we would take Grace out of piano lessons.  Now this doesn't mean she can't try again later but for now this is not her best use of time or our best use of resources for her.

video
I've struggled with the decision but it's finally made and there's freedom in release.  I'm letting go of this dream...for now.

Wednesday, August 10, 2011

Hi, Do you have CP? Can we talk about it?

Through our various therapies, support groups, etc, we know several children with varying degrees of cerebral palsy.  All an inspiration.  However, we don't know, personally know, any adults with cerebral palsy.  I often think about how Grace will be when she grows up and how I have no real personal idea...no one I can call and ask "so what is it like to be an adult with CP?".

About a month ago, me and the kids were at the library, Grace walking with her walker.  As we were leaving a man walks up to us.  From the his unusual gait, I assumed he had cerebral palsy.

Man:  Hi!  "Does she have cerebral palsy?" (Points at Grace)
Me: "Yes, she does."  (Trying to guide her out the door and up the ramp)
Man:  "She looks great!  Don't let anyone ever tell you she can't do anything."  (his speech affected by CP)
Me:  "Thanks so much!  We won't." (a little distracted by Sophia questioning his unusual speech...that is a discussion for later)

He then walks to his car parked next to ours in handicapped parking, gets in, and drives off.  I was so touched that he would stop and talk with us.  It felt kind of like I had gotten a pat on the back and an "everything will be okay".

If I didn't have my three with me (and again Sophia questions), I probably would have ran after him and asked if I could buy him a coffee and pick his brain.  Hopefully next time I will be better prepared.

Yesterday while at the grocery store, looking for an open register, a woman waved me over saying "Ma'am, I can get you right here."  She then turned to walk to the register.  There it was...the unusual gait!  Did she have cerebral palsy?  Can I ask her about?  Will she be offended?  I stood there very conflicted about what to do as she ran my grocery items across the scanner.  I didn't ask.  I was too afraid.  Of what...what would she say...would she want to talk with me about it?  Will Grace get those questions...or just looks of sympathy or even disgust at times.

Maybe I'll get another chance.  What should I do?  What would you do?


Friday, August 5, 2011

Talkin' about Walkin'

Since we have been home from St. Louis, I have had so many questions from friends and family about Grace's mood, behavior, feelings, etc since the surgery.  "What does she think about the surgery?"  "Does she say her body feels different to her?"  "Is she upset that she can't get around as well as she could before the surgery?" "How does she feel about what is happening?" etc, etc.

And the answers are...I don't know.  She doesn't talk about any of this...at least with me.  I have explained to her, both before and after the surgery, what was going to happen and why we were doing this.  I have asked her many times about how she feels about having the surgery...does her body feel different, does she understand why she had the surgery, does she have any questionas, and on and on.  No response, or at least no direct response to my questions.  I'm not sure how to feels about what she has gone through because she has a great attitude, like she always did before, and works really hard during her physical therapy (as long as it is not me trying to get her to do it) and generally seems like her old self...just physically weaker.  And physically she is doing much better than we had thought at only 1 1/2 weeks out of surgery.

I would be interested to know what types of interactions other moms of children with special needs have when there is some kind of physical change like we had.  What am I supposed to think?  She is not talking about walking.

Monday, August 1, 2011

Regrets??

This morning, our first morning back from Grace's rhizotomy in St Louis, I immediately starting Grace's stretching and strengthening routine and I was immediately frustrated...she is so weak.  Of course she is, you are probably thinking, she just had a major surgery!!  Now, it's not that I'm typically an instant gratification kind of girl but when will the "miracles" we were promised begin (again no patience).  Part of the problem is the "no regrets" policy I have tried to follow during this journey with three very premature babies.

Once the decision was made to continue with the surgery, I was 100% (okay really 99%) sure the SDR was the right thing to do, but there is always that .01% or 1% doubt factor...isn't there.  My doubts were increased a small percentage about a month ago when we went for a routine check-up with our neurologist in Dallas.  I had not told him we were considering the SDR until that visit.  He is not a big fan of the selective dorsal rhizotomy.  I don't believe he has seen that many patients who have had SDR (both before and after) but he didn't think that removing the spasticity would help Grace walk..."most CP kids need the spasticity to walk" was his response.  I explained to him that we had been considering this procedure for about 3 years, had done our research, and had talked to several parents of children who had the rhizotomy. None of these parents have had any regrets.  Dr. X then responded (and I paraphrase) "You will never hear a parent say they regret making such a big decision for their child.  They don't ever want to feel they have done the wrong thing for them."  I was speechless...but REALLY?!  Do we become so brainwashed or narcissistic to think that every decision we make for our child is the right one?  Do we really never make any mistakes with respects to our children?

Have we made a mistake?  I don't think so at this point and can't really know until we are at least six months out.  So, when you ask me at that point what will I say and will you believe me?

Friday, July 29, 2011

Day 3 Post Surgery

There wasn't much to report days 1 and 2 after Grace's SDR.  Just lots of sleep and pain management with a little bit of whininess because she couldn't get out of bed and had to lie completely flat.  Pretty much what we were told to expect.  One thing, however I did not expect was the sense of peace that I had about what my daughter had just gone through.  Although peaceful, I did feel a bit uncomfortable about this calmness seeing that I have spent the past few months sleepless, overly fretting causing serious chest pains and in a continual search for validation that a trip to St. Louis would be life changing for my daughter...in a good way.  There were lots of conversations with God and second guessing when Grace's health would fluctuate or she just didn't seem herself.  But as we loaded the van for our journey, I begin to find....well, the only way to describe it...peace.  Pour out your heart like water before the face of the Lord.  Lift your hands toward Him for the life of your young children.  Lamentations 2:19

Now there is no way of knowing whether this has been the best decision of Grace's life on day 3 of post surgery, but I do know as the physical therapist moved Grace's feet and legs in ways that were never possible before, I was near tears and crying out in thanksgiving to our God, who has the ultimate control (how I somehow manage to forget this sometimes if beyond me).  There is so much work ahead of her (and us) but I truly now feel where we had once felt stalled in her progress, we have given Grace a chance to move forward.  A bit stressed about what is involved once we get home but SO excited for the possibilities.  I can do all things through Christ who strengthens me.  Philippians 4:13

ps...wanted to post some cute pics of Grace up and about but can't figure out how to get them from the camera on my iphone to my email to blogger.  sigh

Wednesday, July 27, 2011

And From St Louis

I've been absent for quite a while.  Many times thinking I need to get back to blogging but often too exhausted after the kids get to bed to form coherent thoughts.  There has, obviously, been a lot going on and I will update you on some of the "other stuff" later, but right now I want to tell you about St Louis.

For the past three years the words "selective dorsal rhizotomy" or "SDR" has been in the back of my mind, resurfacing occasionally.  Three years ago we had decided that SDR was not where we wanted to go at that time but knew it would be something to reconsider later.  Well, it's later and we are in St Louis.  Why St Louis?  After doing much research and holding many conversations with doctors and other parents and fervent prayer, we decided that we wanted to put our daughter in the very capable hands of Dr. Park at St. Louis Children's Hospital.  Although SDR is performed in other hospital (including one in Dallas), we wanted an expert...the doctor who has performed over 2,000 of these "permanent" spinal procedures. 

What is SDR?  Because any explanation I could provide would be extremely simplistic, I will direct you to very thorough and detailed information provided by St. Louis Children's Hospital -  About Selective Dorsal Rhizotomy.  In VERY simple terms this procedure involves cutting the spastic nerves thereby eliminating the spasticity that limits much of Grace's movement.  This procedure involves exposing these nerves at the spinal cord and permanently removing any connection.  Pretty scary, if you ask me.

So...how will this help Grace?  Our hope is that by removing the spasticity, Grace will eventually be able to walk independently, as well as eliminate any further orthopedic type surgeries that are often required because the spasticity can cause bones, etc to form incorrectly.  (again see the hospital's explanation before I start sounding really stupid)

The surgery was performed yesterday (Tuesday) and she is currently in the PICU recovering on strong pain medication and valium (for muscle spasms) and we will be moved to a regular room today.  She will get out of bed briefly tomorrow and then will have physical therapy on Friday and Saturday before she is released on Sunday.  THEN THE REAL WORK BEGINS!!!  The surgery is not a quick fix.  It must be followed by strenuous physical therapy.  We basically need to now strengthen and teach Grace to use the muscles previously under utilized due to the spasticity. 

I had never been to St. Louis before and never envisioned seeing the Arch under these circumstances, but I'm so thankful that we are here and that we are doing everything we can to help Grace become independent.  Have we made the right decision?  Only time will tell.

Updates to follow which will include before and after.  (btw...we can move her feet and legs so much easier now...it's amazing)

Tuesday, February 1, 2011

Have You Heard?

I've been absent for a while....busy, unfocused, or really just not wanting to write it all down.  Oh don't get me wrong, it really hasn't all been that bad...just a little overwhelming at times.  


In Bible Study Fellowship (BSF) this year, we are studying the book of Isaiah.  I was really excited to begin this study because I love the prophecy and history.  What I didn't think about was that God would remind me through this study just how great, powerful and loving He is.  He has it all under control and I am so thankful because I sure don't.


"Have you never heard?
Have you never understood?
The Lord is the everlasting God,
the Creator of all the earth.
He never grows weak or weary.
No one can measure the depths of his understanding.
He gives power to the weak
and strength to the powerless.
Even youths will become weak and tired,
and young men will fall in exhaustion"
Isaiah 40:28-30