Catharsis

As I've explained, I discovered the CHASA and HemiKids sites while searching online for activities to encourage Robbie to use both hands. I certainly wasn't looking for a support group at the time, nor did I realize that I needed one. I joined HemiKids ( an "email discussion group where parents of infants and children who have mild to moderate hemiplegia or hemiplegic cerebral palsy share information") and began to get daily emails from others like me--some whose children had just been diagnosed, others who had grown children, and even some young adults with hemiplegia who would post about their life experiences.

It took a few months for me to work up the courage to post a message to the group. I spent days composing my introduction in my head, then hours on the computer getting it just right. You see, it wasn't just that I was introducing myself to the other people in the group. The moment I hit send was the moment when I accepted the reality of Robbie's situation, and the impact that it would have on his life and mine.

Here is what I wrote:

Hi Everyone

I'm finally ready to introduce myself. I have been reading the digests for a few months now, and have been so encouraged, uplifted and inspired by you all! At first I was a bit nervous to write, just because of being new; now I'm just nervous because I have so much to say, I'm not sure where to start. So, here goes... My name is Nancy Clark, my husband is Chris. Our son Robbie has hemiparesis on his right side due to a brain bleed (Grade 4 IVH) associated with premature birth.

Premature Birth

Robbie was born at 29 weeks--an emergency C-Section due to preeclampsia. (There is a whole story about me driving myself to the hospital, since my husband was across the country taking our kids to my family reunion while I was on bedrest--but I'll spare you the details.) Within the first few days of Robbie's life, a routine ultrasound revealed his severe brain bleed; we were given worse-case scenarios which seemed devastating, but had no idea what to actually expect. The next 3 months Robbie spent in the NICU--his main struggles were breathing and eating. My main struggles were splitting time between Robbie and my other 3 boys (now 8, 5, and 3), teaching Robbie how to eat (2 full months of daily unsuccessful breastfeeding attempts), and learning to advocate for him. Long story short, Robbie went home able to breastfeed (miracle) and needing oxygen (no longer an issue).

Discovery

Once Robbie got home, I was surprised to find that I needed time to "recover" from the whole ordeal; it took months for me to feel rested, back-to-normal, up-to-speed. By the time Robbie was 6 months old (3 months, adjusted for prematurity) we started noticing that his right arm wasn't doing a lot. Luckily, Robbie sees specialists every 6 months as part of a Neonatal follow-up program, so we were immediately referred to our local Early Intervention office. It took a couple months for them to connect with us (oh, how I wish I could go back and call their office and pester them on a daily basis), but we finally had Robbie assessed, set up his plans, and he started with occupational therapy twice a month.

Diagnosis

It never dawned on me to ask anyone what Robbie's condition was called. We would just say, "he doesn't use his arm and hand very well." Our pediatrician would follow-up and ask about the "weakness" in his arm. Finally one day I asked the OT, and she taught me the word hemiparesis. Even at our next Neonatal follow-up appointment, a specialist said something like, "You're going to hear words like hemiparesis and hemiplegia, but that doesn't matter. All that matters is who he is and what he can do." Maybe she was trying to help us not feel labeled or sad, but I would have liked a more straight-forward explanation. If nothing else, I would have found this great support group much sooner!

Denial?

Of course I didn't realize it at the time, but I now see that I have spent the last year or so in some level of denial. For a while I though we would just get Robbie some help and after a few months he'd be just fine. I just thought we needed to teach him how to use his hand better, to get it to "catch up" to his other hand. Once we started OT, I found out that the fine-motor skills were the smallest concern at that point; I hadn't even considered the effect this would have on crawling, walking, etc. Another problem I had was setting aside time to work with Robbie. My husband has always been the one to worry more about milestones and help our kids play and learn motor skills (I liked to say that I would keep them fed and alive and he could worry about the rolling, crawling, etc.). Early on, I always scheduled Robbie's OT appointments when my husband could be there, since I figured he would be the one incorporating these new skills when he came home at night and had time to play. I also struggled with feeling intimidated during OT appointments. I would get nervous to report on our progress or try to do things with Robbie in front of the therapist.

Resolve

Over the last couple months--in large part due to reading these hemi-kids messages--I have made great strides in understanding what I need to do for Robbie. I can't sit and wait for a doctor or therapist to tell me what Robbie's next step should be or what specialists we should be seekingout. I can't expect that my husband can give Robbie all of the help and training he needs in their limited evening and weekend play sessions. I can't expect that things will just happen or just suddenly get better. I have to be his advocate; I have to be the expert. I have to do it.

So, that's who I am and where I am. Right now Robbie and I are working on his crawl position to build up arm strength (so far he can roll and he can just barely army crawl). We are also working on grasp-release with his right hand (he'll use it if we make him). I have a lot of questions. I need to ask them more with the doctors and specialists, and I need to start asking more here. I feel blessed and thrilled to be a part of this group!

Thanks,
Nancy Clark

(posted to the HemiKids email discussion group a little over a year ago, when Robbie was almost one and a half)

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Streaking for Pediatric Stroke, Day 29