Home of the Four Trans

For the past year, I’ve been engulfed in Justin’s heart and heterotaxy condition that I hadn’t taken the time to research on the effects of his cardiac surgery related stroke.

I think I hit an all time low last week when I saw so little improvement on Justin’s right affected arm/hand and leg despite the three times a week sessions for the past year. Like any mother, I wanted the best for my child, and I didn’t think I was providing enough for him to reach his potential.

On this particular day, when I had hit a low point, I had observed in therapy how much Justin wanted to walk, but couldn’t. He had made all the necessary movements, but his body was not cooperating. He’d step forward on this left, then on his right, and collapse to the right because he didn’t have the strength, balance, or proper foundation in his right foot. My child was working so hard, but his body and brain could not make the connections to do what he wanted it to do. I felt defeated despite all the options that laid ahead of me: intense therapy sessions, ankle brace, second opinions, sensory integration therapy, constricted induced therapy. I didn’t know who to trust, or which programs to entrust my child in.

That night, after the boys had laid their heads to sleep, I sat in front of my laptop and cried. I had felt like the answer was in front of my face, but I wasn’t looking in the right place.

After the cry, my head emerged from the fog of hopelessness, and it became clear to me what I had to do (crying is cathartic!). I started researching about cerebral palsy and on the term hemiparesis and hemiplegia, conditions that have been freely tossed around by Justin’s therapists. Although the cause of Justin’s brain injury is different than children with cerebral palsy, the repercussions and therapy for recovery are similar.

During my research, I found blogs and websites dedicated to children with hemiplegia. I suddenly came out of the dark and saw that there were many children like Justin, and felt less alone. I am grateful for the Hemi-Kids Listserv hosted by Children’s Hemiplegia and Stroke Association, in particular because it has allowed me to connect with many parents on one medium to learn from their experiences.

I love the internet!

The most important thing I’ve learned so far is that children who’ve experienced brain injury may never regain full usage or function of their affected side–and, it’s OK. One parent explained to me how well her child is able to function with one “good” arm, and the other as a “helper” arm. He’s even able to beat his bilateral capable friends in video games one handedly.

You see, I’m not looking for perfection, I’m looking for answers and hope. I am so grateful for all those families who are brave enough to share their stories out there, enabling a bit of light in a sometimes dark world.

I will update as I learn.

This entry was posted on Friday, April 24th, 2009 at 1:22 am and is filed under Baby Book, Uncategorized, Videos. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.