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?

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

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)

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

Just Another Weird Dream.

A few nights ago I had a very unsettling dream.  Actually I have quite a few of those.  In this dream I was alone with my children and had to find a new place to live.  As I am searching for a new home, I notice I only have Mack and Sophia with me.  Grace was not there.  We look at several places always keeping in mind that we had special circumstances and needed accessibility.  But Grace was not there.

I then realize that I have left Grace at home all alone.  We get home and Grace is there.  She's okay and has managed to work her way across the floor.  Why did I leave her?  Why was I looking for a new place to live?

I told a friend, who knows me really well, about this dream.  She said that it included many of my fears...being alone and leaving Grace alone and not having anyone to care for her.  What do you think?  I hate these dreams.

My Status

My kids are now 5 years old.  My 5 year old daughter was diagnosed with cerebral palsy at about 18 months of age...3 1/2 years ago.  In those 3 1/2 years there have been tears but more than that, there has been a focus to help my daughter any way I could.  Therefore, the drive outweighed, and more times than not. overcame the tears and weariness.  I felt and appeared strong.  I was focused.  I was capable.   I was ready for anything.

What has happened over the past month...........
The tears come more readily and I often have to fight them off in public.
It takes me longer to make phone calls to find specialists, therapists, doctors, etc.
I don't all friends back.
I don't want to help with sit-ups and bridges...her many exercises.
I don't feel strong.  I just feel tired.  I feel weary.  I don't want to smile through it all.  I want to scream "my daughter has a disability and I don't know what to do anymore."

What is going to happen?

It will all come back...the drive, the focus, the answers.  I know...I hope.  But for now...I'll just get by and ask my Father for a lot of help.

Riding the Short Bus

A long time ago, when I was in school, I remember other kids saying things like "That kid is so (insert derogatory adjective), he rides the short bus." or "I bet he/she rides the short bus."  Since I grew up in a very small town, there were many of us who rode a short bus to school or to athletic events, but I knew that there was something no so great about "riding the short bus" when used in that context and that is was said in a mean-spirited way.  However, I wasn't exactly sure why people associated mental or physical disabilities with a bus size.

Well, now that I'm grown up, my daughter rides the short bus.  My daughter has a disability.  She has to have someone help her on and off the bus.  Every other child on the bus also has some type of disability (physical or otherwise).  It makes me wonder if my daughter will now be made fun of because she really does ride the short bus.  I think I hate the short bus, but I love the kids who ride it.

She's Not Normal

"You know, I think you should just treat her like a normal child." is said

"Well, I'm sure you're right. I really try to do that." is the reply.

BUT...what I really want to say is...

"So, you think I should treat my child with cerebral palsy like a normal child, because your experience with three "typical" children gives you enough knowledge to be an expert in the area of special needs. If she was a normal child then, we wouldn't have therapy four times a week and praying we can pay for it all. Instead we would have soccer, baseball and ballet to worry about. If she was normal, I wouldn't still be trying to potty train my 5 year old child and have boxes of pull-ups in the closet. If she was normal, I wouldn't be spending time and a lot of money to get the cutest shoes I can find, that will fit over AFOs. If she was normal, we wouldn't be spending time looking for just the right color for the wheelchair so that maybe her friends might think it is just a little bit cool and not just weird. If she was normal, my back wouldn't ache all the time because I wouldn't have to lift her and hold her and try to position her so that she can have a semi-normal experience with her siblings and peers. If she was normal, maybe you would treat her that way."

Thanks! I needed that!

Helpless

Yesterday we (the trips and I) went to the Dallas World Aquarium with some friends. If you haven't been, it is really worth the trip. I bit expensive for my taste but really well done.

As we started walking through the exhibits, I noticed Grace wasn't herself. This was our first outing in her new wheelchair. She wasn't talking, pointing or even really looking around at the animals. I tried to direct her attention and asked lots of questions but there was just no interest...her eyes just weren't shining like they always are. I started becoming concerned...Is she sick? Is she sad? Is the wheelchair uncomfortable? In the meantime, Sophia, Mack and our friend Matthew were jumping up and down with so much excited about the animals we were seeing.

I pulled her aside from the excitement and tried to talk with her. "Grace are you okay? What is wrong?" Her only reply was "Hold me." So I took her out of the wheelchair and she began sobbing. Big tears...big sobs. I was so confused. "I want to go home" she said. I was at a loss. Does she realize how different she is? Does the wheelchair make it that much more evident to her? It was all I could do to not start sobbing myself. I was helpless.

And From Ambergris Caye

It has been so interesting to me how my perspective on life in general has changed since Grace's CP diagnosis. Our life is not as we imagined. It seems now that I view places and occasions based on accessibility...can Grace do that...can we get her there...how will it work??

Abe and I are currently in Belize celebrating our 10 year anniversary...our first trip together since the birth of our triplets. We are staying on a beautiful island and have seen many families with their children. My thoughts of bringing our triplets, specifically Grace, here actually started as we boardeded a very small plane from the main land to the island. How would we get Grace's wheelchair on this plane? Then as we landed, how would Grace do with her walker on the very sandy and bumpy streets?

Yesterday we went on our first scuba dive in Belize. I thought of how much Mack would love seeing all the sea creatures he loves to read about about, up close and personal. Then as we donned our scuba gear, I realized that Grace will probably never be able to scuba dive. Will she ever be able to pat a sea turtle?

This morning over coffee, I watched a family with 3 kids and listened as they talked about the activities of their day. Will she ever snorkel or kayak? Will Grace ever be able to see Mayan ruins? Will she ever be able to cave tube?

Dear God, I prayed, how do I as her mother make sure she get to live to the fullest? Please don't let me fail.

Wheelchair Weary

About a month ago we ordered a wheelchair for Grace. The wheelchair we picked will look much like the one above but is hot pink (of course). We had been putting it off this decision as long as we could but as we may be losing Medicaid soon, we decided it was time. I had been dreading this moment and praying for a miracle so that it would never come. Although Grace is still progressing and we are still hopeful that she will walk unassisted one day, it is inevitable that a wheelchair will be needed for long distances. I guess this is just one more detour from from denial that my daughter has CP and will always require some kind of assistance.

I guess I've been thinking a lot about the wheelchair and how it will affect Grace and our lives, because last night I dreamed I was in a wheelchair. I was not with anyone I knew but I was in place that we frequent. The only people that acknowledged me where those also in wheelchairs. Everyone else just ignored me...or if they looked at me, they would look away. How will this wheelchair exactly change our lives? I guess we'll find out soon.

Yeah! Just What She Said!

I've done it before and I'm doing it again....I'm deferring to Ellen's blog. She is a wonderful writer and has an amazing son that she loves to write about. Just change "him" to "her" and insert Grace's name and you have my child and our situation. Ellen, you have said it perfectly...

My Child Has Special Needs but Please Don't Treat Him Special

Oh, and Ellen, I love that Max!!

So Many Unknowns

Grace at 4 1/2 years old weighs only about 27 pounds and can still be lifted and carried with reasonable ease. However, it is becoming more difficult and I defer to Abe to carry her much more than I used to.

This past weekend we went to a birthday party and much like most children's birthday parties, festivals, etc, there was a bounce house. Big hit for the kids and Grace wanted to be right in the middle of it all, as she always does. We have also been to several parties at Pump It Up or similar venues, where Grace wants to climb, slide and jump with her friends. Abe and I always do our best to facilitate this for her but it is starting to become increasingly harder and there are only so many of these things we can do with her.

Today, we had some friends at our house to play and they all wanted to get in the playhouse. Grace wanted to be right there with them. I couldn't get into the house with all the kids, so I did my best to help her through the door and then hung onto her shirt to keep her from falling. I can't believe she didn't and she had so much fun with the others.

How long will we be able to do this? Will she ever be able to do these things herself? What do we do when she is too big for us to carry? What will I tell her when she asks to play with the others and because of her physical limitations, she cannot? I can barely stand to think about it.

You see, Grace is the most outgoing and friendly of my children. Will her personality change? Will she want to hide rather than entice others to talk with her? Will I lose my sweet Grace?

Mommy, Please Stay With Me

This week Grace started another session of "intensive therapy" at Beginning Steps Therapy. (sorry the photos are so bad, my camera is broken so I'm having to use my phone) She will go everyday for three weeks for three hours each session. This is her third time to do this and this time her sessions are from 1:00-4:00. The first time she did this I stayed most days for all three hours. I was able to do this because it was in the morning and Mack and Sophia were in school. This time however, I am not able to stay every day. Most days I have to meet Mack and Sophia back at the house by 2:00 and other days we have things to get done.

"Mommy, will you stay and watch me today?", Grace will ask me most days and when I can't she cries. But only for a little while. She loves Lissa, her therapist, and I trust her completely. She seems perfectly content when I pick her up but I still feel guilty. I especially feel guilty when I have to leave so I can take Sophia to dance lessons, somewhere I know Grace would love to be and will never really fit in. One day this week, as I was leaving I told Grace I had to take Sophia to dance lessons and I felt bad as if I shouldn't have told her and that Sophia needs to change out her leotard before we pick Grace up. But somehow hiding it from her also feels wrong. What would you do?

When I've Almost Given Up

As Mindy Smith sings "When I've almost given up, something about you draws me back again"; when I almost think I can't do it anymore, there are some very special people that keep me going...all those wonderful moms of children with special needs out there. You know your life and the life of your child will not be as you had hoped or expected. Your struggles will not include picking out soccer shoes but picking out shoes that fit over those awful AFOs. Your concerns do not include whether your child will make the cheerleading squad or debate team; you just wonder if they will ever speak...or see...or hear. However you still find the joy and the triumphs and you still manage to encourage others along the way. I really needed to go on your blogs today and see the sun.

Thank you...you all know who you are.