Cerebral Palsy- It just is.... Part 2

In some ways, this post is easier for me to write.  The first part was very factual and I wanted to make sure all of my information was correct.  I stressed out about double checking my sources to make sure it was right.  It took a lot of time.  But in other ways, this post is way harder for me to write.  Because this part is more personal.  I am an honest person.  Sometimes too honest.  And I don't exaggerate.  If I say something is easy, it's easy.  If I say it's hard, you can believe it is.  Being honest about something so new and so personal, when it's wrapped up in a package of a brand new, vulnerable, welcome-to-life six year old is hard, because my emotions are RIGHT THERE.  For him, for the changes to our family, for how this is affecting all of us.  Here is my best shot. 

Question: How has CP affected you?

Answer: Tough question.  Because I can't really pinpoint the moment CP started to affect me.  CP just happened.  As parents, we usually don't choose our children.  Our children are each a unique package of strengths and weaknesses that somehow mesh into our family in a blend of perfectness.  Seth is six, and we did choose him, but the process was basically the same.  One day, I just looked at him and he was one of us, CP and all.  I never really made the decision to allow CP to affect me or not affect me.  It's just what it is, part of his package.  No different, really, than if he were strong willed, obedient, talkative, or stubborn. 

That being said, cerebral palsy can be inconvenient.  It requires me to slow down.  It demands patience, something I am not always good at.  Cerebral palsy means walkers, wheelchairs, countless doctors appts and therapy appts and AFO's.  It requires at least two daily routines of stretching to keep his muscles stretched out.  It means daily medicine to help with spasticity.  It means helping him on and off the potty, in and out of the shower, helping him get dressed, lifting him in and out of the car.  Cerebral palsy can be inconvenient, but let's face it.... all children are occasionally inconvenient.  Some are demanding, defiant, obstinate or mouthy.  Seth is none of those things.  Seth's needs are not greater.  They are just different. 

Question: What did you expect when you brought him home?

Answer:  Another moment of truth, because this shows my complete naivete towards orphanages in EE, but when we went to Ukraine to adopt a 6 year old with CP, I fully expected to come home with a fairly typical 4 year old who couldn't walk.  Little did I know. 

Question: How are those expectations different from the reality?

Answer:  Physically, Seth is about what we expected.  Thanks to several people who had met him, we knew what we were signing up for. We knew he could pull to a stand.  We knew he could sit up unassisted.  We hoped he could crawl and were happy to learn he was able to.  Seth is strong, determined and motivated.  He is also very active.  I didn't expect that, but I love it.  He does most anything any other little boy does.  He just finds different ways to do some of them.

What makes this challenging is not his CP, but his institutionalization, and how his lack of previous care has affected him.  I wish he had been born into our family and had gotten the care, education, love and therapy he needed from the beginning.  If he had, he'd be a typical 6 year old boy who could walk with assistance.  Or maybe even unaided.  He'll get there.  He just took the long way.

Question: What does Seth's typical week looks like, to include therapy appts, doc appts, medicine, home therapy, etc?

Answer:  Seth currently has two PT and two OT appts every week.  He will start speech therapy as soon as he's ready, and they're also talking about adding in water therapy.  In addition, he has occasional neurology appts, ped appts, ophthalmology appts, and orthotic appts.  He is on one medication, called baclofen, to help reduce the tightness in his muscles.  We stretch him twice a day, morning and night, to give him greater range of motion.  Add in all the things he still needs physical help with and his schedule is.... a lot. 

This is a pic of my planner for the month of February.  All highlighted sections are doc appts or therapy sessions, mostly for Seth.  On the days where you see two or three different highlighted items, those are days when we have two or three different appts.  Not uncommon.  We knew this going into it though.  We knew the first year would be tough.  Our goal is to have him as independent and caught up as possible before he starts school in the fall.  This is what it takes.  But it will get easier.  This is not as much about CP as it is about 6 years of neglect. 

Question: What are Seth's lifestyle limitations?

Answer:  This is a difficult question to answer because as of right now, we're not completely certain what's CP and what's orphanage delays.  Meaning what is a somewhat permanent part of his life and what is just due to him never having been allowed to develop skills.  He is learning how to use the toilet independently.  He's almost mastered feeding himself.  He needs help getting dressed, but he assists us by pushing his arms, legs and head through.  He is not talking much, but that is to be expected with a language change.  He says a new word every few days, but still isn't using them consistently in every day language.  We don't know how much better that will get and if it's a result of his CP, but we are working on sign language to back it up, just in case.  We know his receptive language is a lot better than his verbal, which is also to be expected. 

He is now able to self propel his own wheelchair and gait trainer, which gives him a lot of mobility options.  I doubt he'll be a quarterback on a typical football team or center on the basketball team but he can one day do wheelchair basketball, and will likely be one heck of a swimmer.  And he's strong.  Maybe a weight lifter.  I don't really see him in terms of limitations.  It's about adaptations.  He can accomplish anything.  We will have to think outside of that box to help him achieve it.  Kids with CP can do anything any other child can do.  They just may have to go about it a little differently.

Question: What are my insights on CP, as a caregiver?

Answer:  I guess I never have really thought about this.  CP just is.  We chose this.  It didn't come as a surprise.  It's easier than I expected in some ways.  He's a sweet little boy who needed a family.  A regular little kid who can't yet walk.  He's got a killer smile and an amazing spirit that has overcome so much.  CP sometimes makes my life tough.  But this isn't about me.  I have a boy who survived 6 horrible years in a crib.  I can't whine.  If you ask Seth what has set him back the most, it won't be his CP.  Since coming home, we have watched this boy come to life.  He has persevered.  He has overcome.  CP is part of who he is.  Love him, love CP.  It's part of his package.  It's no bigger or no less than having a child who struggles in school, finds it hard to make friends, or can't concentrate on their homework.  It's not harder.  It's not more.  It just is. 

If I could trade anything about Seth, there's not a thing I would change.  Honestly.  I would not trade off his CP.  Because I love him.  I love every square inch of him, and a large part of who he is, is developed because of the hardships he's had to endure.  To take away CP would be to change his character,

his patience,

his determination and perseverance,

his amazement for all that's around him, his humility.

Who wouldn't want a child with a little more of those qualities? 

Our trials make us strong.  They turn us into who we are.  I love who he is. CP and all.