Friday, April 25, 2008

Our Family & CP

When our daughter Isabel was diagnosed with mild cerebral palsy shortly before her 2nd birthday, my initial reaction was dismay and fear. Not knowing anything about CP, my mind immediately went into worst-case scenario mode and I envisioned a disease that would be debilitating and get progressively worse over time. As I began to research her condition, however, I learned several facts that set my mind at ease.

First, cerebral palsy is not a disease. It is a “problem with motor ability – gross, fine, oral – caused from brain damage suffered sometime before, during or after birth up to a year or two.” CP is “one of the most common congenital disorders of childhood” and while it cannot be cured, it also is not progressive. In other words, it will not get any worse than it is now – and thankfully, through regular evaluations, therapy and other “helps” such as the leg braces (AFO’s) Isabel currently uses, progress can be made in those areas where she struggles with motor skills.

Most people who meet our daughter for the first time will not even be aware of her condition. It is only in situations that involve physical activity – running, jumping, etc. – that it becomes more obvious. For instance, when Isabel runs she has a tendency to use her toes and lift her knees higher than normal; also, she assumes the “teddy bear” pose with her arms bent at the elbows and her fists raised to chest level. When she jumps (which she loves to do for some reason!) she holds her arms in this same way and her landings are somewhat stiff.

We were blessed to have Isabel’s condition diagnosed at an early age so as to begin therapy and intervention as soon as possible. But she takes most of the credit (after the Lord, of course!) for her success with her tenacious spirit and good attitude. Even as young as two or three years old, she would amaze us and her therapists by her ability to focus and push herself for the entire length of a session (usually 30-60 minutes.) One therapist told us that without CP, Isabel would most likely have been an athlete because even with CP, she loves physical activity and pushes herself to accomplish athletic tasks.

Whenever a new specialist reads through Isabel’s medical records and then observes the little girl standing in front of him, there is almost always a look of amazement in his eyes. One doctor of physical medicine and rehabilitation told us that by reading Isabel’s charts, she literally expected a child to arrive strapped into a wheelchair. Since Isabel was not breathing and didn’t have a heartbeat for eight minutes after her birth (Apgars were 0 & 0), she is truly a miracle. The doctors at the time said she would either die or be a vegetable. GOD, on the other hand, said, “I don’t think so!”

So why I am taking the time to write about all of this right now? In part, it is because we recently found a PMR doctor here in Chile and began to follow up with appointments, x-rays and getting Isabel fitted for her leg braces (AFO’s) again. And in part, it is because with the start of Kindergarten we have begun to observe a few areas of difficulty that we didn’t see before (fine motor skills for writing and Isabel developing a wart on her finger from the effort of holding her pencil, for example.)

And finally, it is because of a comment that Eva made to me last night that “I don’t like how Sissy runs with her arms like this” (illustrated by bending her elbows and lifting her fists to her chest) which literally brought tears to my eyes, because if her own sister is saying something about it then I wonder if/what other children might say to her when we are not around to hear. I have seen with my own eyes how Isabel can be left behind in moment of childish play when she simply can’t keep up, and over the years I have also observed how certain children will bully the weaknesses they find in her. (When Isabel was barely two years old there was another, bigger two-year old that would come up to her in church and shove her simply because he had discovered she was so easy to knock over … and there have been other kids like that since then.)

I recently read this comment by another mom whose child has mild cerebral palsy:

“Still, I wonder what lies ahead for her as she grows up. What other simple tasks will be difficult for her? Since she is "so normal" in all other areas how much will people expect her to do "normally?" These are some of the reasons why the diagnosis of mild CP is so frustrating. We expect her to be able to do all things, and she can't. But since her mental capacity is not affected, we tend to forget that she does have limitations.”

We are blessed with an amazing child (well, three amazing children!) and I truly believe that God has an amazing future in store for her as well. She is not perfect; in fact, she has a temper to rival none sometimes! But perhaps due to all that she has experienced and observed, Isabel is the most compassionate child I have ever met. I look forward to seeing what God does with that capacity for compassion in years to come, and I pray for wisdom to meet her special needs and guide her as He would have us to do in the meantime!

3 comments:

Alisha said...

You're a good mom, Steph. Isabel couldn't have been entrusted to a more caring mother than you!

Rebekah Hubley said...

Stephanie-

Thank you for writing this. God knew that I needed to read this! There is a possibility that Jonas has slight CP too. We will not know until he is checked out here. I don't know if I will know when I go and get him??? We don't know if his gross motor skills are so delayed because of being blind, or having CP??? By the way, his passport was approved on Wednesday, and they called me during our anniversary dinner on thursday to tell us that the Passport had gotten printed, and was at GLA. They will have his visa appointment this week, and then I can get plane tickets!!!!!!!! Yeah....

iheartchocolate said...

This is an important story-of what God can do. I hate that she suffers in any way, but what an instrument she will be with such a compassionate heart.