Friday, July 6, 2012

Beyond the Diagnosis

We knew from the time that the boys were a week old that they had brain bleeds and hydrocephalus. We were told that they were at high risk for Cerebral Palsy, but that many kids who have brain bleeds like theirs (the second worst type) go on to be ok. Andrew was released from the hospital and the neuro-surgeon told me that he so far was developing normally and looked pretty good. 

The first year and a half was a whirlwind. I worked sooo hard on everything developmental. We listened to classical music, we worked on our muscles everyday for hours, I created speech games to incorporate babbling, I read to them constantly (Charlotte's Web was their favorite), and we did sign language. We were visited twice a week by their therapists and teachers. When they turned a year and were cleared of their "high risk, no-immune system status," we joined a sign language class for babies to continue to work on what we had started. We also did baby gymnastics. I was determined to overcome as much as I possibly could.

The therapists we had at the time were very encouraging. The boys were developing at their adjusted age. They were ahead in some areas and on par for everything else. They didn't qualify for PT at that time because they were actually where they should have been. 

Fast forward 6 months. Andrew started showing delays in gross motor development. He could not stand up easily and had a difficult time pulling to stand. He started army crawling and could get around that way, but didn't go into the regular crawl that he was supposed to. After asking and asking, he was finally given physical therapy. The PT came in and started working with him. He quickly began to crawl and was learning to stand up. One day, my husband and I noticed something that scared us. Andrew's leg began to shake uncontrollably after being worked by the PT. I immediately thought that it was a seizure, but the PT assured us that she probably just worked him hard and his muscles were reacting. We took him to the pediatrician who told us the same, but was really kind of cryptic about what it meant.

As we went on in therapy, the PT tried on a set of AFOS that belonged to another child. Andrew had much more success standing up. We knew that we needed to get him some braces, so off to the pediatric orthopedic surgeon we went. I walked in with the mentality that I have this premature baby who is slightly delayed in his gross motor skills but on par everywhere else. The delay was "developmental" I thought.... not based on the brain damage that he had incurred and definitely not permanent. 

The orthopedic surgeon came in and listened to his medical history. He then checked Andrew's legs and feet.. pushed up on his ankles and immediately the shaking that we had noticed earlier began. He looked at me and said, "I'm sorry, but he has Cerebral Palsy. He has spastic diplegia. I will give him braces, but know that just because I give him these doesn't mean that he will immediately start walking. It will be a long road." I was devastated. I knew what cerebral palsy meant. I knew that meant that he would face a lifetime of challenges. Suddenly, my whole perception of my little boy changed. 

I went off to Disneyland because that is where I go when I need to think or be by myself. It's kind of my happy place. So, off I went with Andrew, thinking of all of the things that he will never do. I was so incredibly focused on the diagnosis. He will never talk... he will never walk... I will never be able to take him to Disneyland and have him tell me what he wants to ride... he will never read... he will be confined to a wheelchair and not do anything. I was wallowing... and completely ignoring the little boy that sat in the stroller in front of me. About half an hour into this trip, I realized that Andrew was starting to flip out in the stroller. I look down and he is signing "horse" over and over again and pointing to the carousel. He was repeatedly saying, "Mama" and then signing horse. I hadn't been paying attention, so he was throwing himself around in the stroller. It was at that moment that I realized that I am stupid to put so much emphasis on a diagnosis. Here is my one-year old who 10 seconds ago I thought would never be able to tell me what ride he wanted to go on at Disneyland and he is making it VERY clear exactly what he wants. He could already crawl and has already shown that he is one of the most stubborn children that I have ever met. 

It was that evening when I vowed that my boys would experience as many things as possible and that I would do whatever I could to allow them (and push them) to participate in things that normal kids do. I had to get over my fears of them getting hurt and allow them to use what they could do to experience life. People are amazed when they see Andrew climb an inflatable slide that is 15 feet up and are even more amazed when I just set him down and tell him to have at it. They are amazed when Andrew reads as well as he does. I have even had strangers comment to me that they are amazed that in a public restroom, I send Andrew to the sinks by himself and tell him to wash and dry his hands without me hovering and doing it for him. Independence is what I am teaching him... and also that just because he has a wheelchair and just because things are harder for him, that doesn't mean that he can't do it. 

Now, Andrew and Benjamin are turning 8. There are some definite deficits in their development. It has been tremendously difficult. There are days where I am utterly frustrated that they can't do things that are easy for other kids. But, then, I have to remind myself of all of the things they shouldn't have been able to do and are now doing. It's a fight and an uphill battle. I constantly say that I want a sense of normalcy.... then I realize that this is MY normal and that I need to embrace it. I need to let go of my expectations and see my child for their expectations. I might want them to write all of their letters, but they are just trying to figure out how to place their fingers to hold onto a pencil. Celebrate the small things because everything is a victory.

You have to look beyond the diagnosis and see the child. It's a difficult thing to do and is something that I have to remind myself of often. 

Andrew getting ready to go down the slide at the park. Age: 2

Andrew crawling on a rope bridge at California Adventure.
He doesn't let the fact that he can't walk slow him down. Age: 7

Andrew climbing up the big inflatable slide at Monkey Joes. Age: 5

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