Chris's Story  

I’ve kept putting off writing Chris’s story, thinking I was too busy.  But now that I’m sitting down to do it, I realize it was because I was avoiding facing the emotions that go along with it.  Chris’s story is full of emotions - some of them difficult to face, bringing tears and grief; and others are great to remember, causing me to smile or laugh.  In any event, his story is far from finished, with many question marks for his future.  But this story will focus on how it all began up until now........    written from his mother’s perspective.  The challenge will be to give enough details, but not get bogged down in them.  Bear with me if that happens.  Here goes…….

Chris was my 2^nd pregnancy and all was going well, nothing unusual.  We were happily looking forward to his arrival which was to happen around end January, 1989.  But on December 10^th, 1988 (7 weeks before my due date) I woke up on Saturday morning and thought I’d wet my pants a bit.  Immediately I wondered if I was leaking amniotic fluid, so we called the midwife who came to examine me.  She wasn’t sure, so sent me on to the hospital to be examined by a gynecologist who indeed confirmed that I was leaking.  He had me immediately admitted and said I had to stay in bed for weeks to try to let the leak seal up and so the baby could mature inside of me as long as possible.  They also tried to collect enough amniotic fluid to see how mature his lungs were, but that didn’t succeed.

In spite of the medication to prevent contractions, I went into labor.  The medication caused it to be very slow so that I didn’t recognize what it was.  The 3^rd day in the hospital Chris could not be held back and was born on December 13^th at 11:10 pm.  He came so fast that Ed couldn’t get to the hospital in time to witness his birth.  They warned me that maybe he would be whisked away to be put on a respirator if he couldn’t breathe himself, etc.  But he was surprisingly strong for a 7 week old premie and started crying immediately.  His Apgar scores were 9 and 10.  The gynecologist was pleasantly surprised at his healthy condition and the first thing he said when Chris emerged was, “Wat een flinke jonge!” (what a strong boy).  So my fears were immediately relieved.  Interesting side note:  the gynecologist’s name was Dr. Engel, which means angel.  He said to me, “You can always say your son was brought into the world by an angel!”  

They put him in the neonatal intensive care unit in an isolette to monitor him, and I stayed as long as our insurance would cover which was 8 days.  He did very well and after a week they put him in a normal baby bed in an extra warm room so he wouldn’t have to use too much energy to keep his body temp up.  He graduated from there to a normal bed.  In total he was 3 weeks in the hospital before coming home.  Between visits to the hospital I was pumping breast milk to keep him supplied.

He came home and mostly slept, waking only to eat and then back to sleep.  Around 9 weeks he got pneumonia and had to go to the hospital for 8 days.  Other than that, he developed as a normal baby and all was well.  Around 4 months old he became colicky.  Every evening he had a “cry hour” where nothing soothed him and we were busy with him each evening until 11 pm or so until he would fall asleep.  Ed developed what we called the “bounce pat” to sooth him.  This period lasted about 3 months.

From a previous job I’d had, I knew that premies are late in their motor development, but usually catch up around 2 years old.  So when Chris was slow to roll over, reach out, focus on objects, etc., I wasn’t alarmed.  Around 7 months I noticed that one of his eyes would wander off to the side, so I thought “maybe he has a lazy eye and that’s why he doesn’t focus on faces or reach out for toys”.  So I took him to the pediatrician for an exam.  He noticed the lack of focus, but was more concerned with the fact that Chris was stiffer than normal.  This was something I hadn’t noticed.  He referred me to a therapy center to have him evaluated, which we did.  They said they’d like to work with him for 3 months and then give their evaluation.  So I took him weekly for physical therapy from 9 months old to 1 year old.  At the 3 month evaluation meeting, the team of docs/therapists told us that Chris was handicapped. 

This was not at all what we expected to hear and we were not prepared for this.  Because it was all in Dutch, we also couldn’t recognize the terms they were using.  They don’t use the term “cerebral palsy” in Dutch.  They did say he was spastic (spastisch).  So “handicapped” and spastic was clear, but how that applied to Chris was not.  We walked away feeling numb and confused.

My response to hearing this bad news that I couldn’t yet process, was to deny it.  I remember thinking, “What do they know anyway?  ‘Handicapped’ doesn’t fit with my son.  He’s just behind, and he’ll catch up.  He just needs some extra help.  ‘Handicapped’’?  Maybe a wee little bit, but nothing that can’t be overcome with time and therapy.  Look at him, he looks just fine.  They’re exaggerating.”  And of course I was asking God what all this meant and praying for clarity.

Just a day or two after this shocking news, God spoke something very specific to Ed.  He was walking through our hallway and he heard God speak these words:  “Chris may be handicapped, but my plan for his life is not handicapped.”   He shared it with me and we both took much comfort in this truth. 

We often remind ourselves of it when we’re discouraged.  Chris has a destiny in God, something to contribute, just the way he is.  God will work in him and through him in ways we can’t imagine.  He will make good use of Chris’s way of being who he is, regardless of his weaknesses and limitations.  In fact, maybe even more because of them.  This verse in 1 Corinthians 1:27-29 describes it well:  But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong.  He chose the lowly things of this world and the despised things – and the things that are not – to nullify the things that are, so that no one may boast before Him.”  Much of our journey in coping with Chris’s handicapped state has been learning how to see him through God’s eyes.  And we’re still learning!

It took about 4 months for the reality to finally sink in and for me to accept that Chris was handicapped.  A cloud of grief hung over me for a time, and one night I finally realized I had to let my image of a physically perfect Christopher die, and I had to embrace the physically imperfect Christopher.  This was my mourning process, which lasted a while…  feelings too deep to describe well.  Anyone who’s gone through the death of a loved one knows what it is.

During and after this dark time Chris continued with physical therapy, and at 2 ¾ years old he started going to a pre-school group at the therapy center.  He was at this center until he was 6.  I continued thinking he wasn’t SO handicapped and that all would be fine.  At 4 years old the child psychologist told us that he was also mentally handicapped.  Another blow to process and wonder what that would look like.  He didn’t think Chris would be intelligent enough to even go to the special ed school, but he wasn’t sure. 

At 6 years old they told us they didn’t think he’d be able to learn to walk independently.   He was walking with a walker.  He could do things in therapy when asked to do them, but those movements didn’t become automatic responses which is necessary to take it further and walk independently.  Another blow to work through. 

At 6 he was evaluated with enough intelligence to start going to the Special Ed school.  They have different levels, and he is in the lowest level.  He has been at this school ever since and has always enjoyed it.  Although he’s very slow at learning, he loves to learn and accomplish new things.  He received all his therapy there:  physical, occupational, and speech therapy.  He also had swimming lessons for years and 2 years ago got his swimming diploma.  He loves to swim and be in the water (freedom for him!).

To be continued…………..