I'm Gonna Plaster a Smile on My Face Because That's What I Do

Today I met with Ben's neurologist. Ben and I went alone because Landy was in Madison, WI and headed for DC, although he certainly wanted to and tried very much to be here with us. I just didn't want to wait any longer than we had to, although in hindsight perhaps I should have. I just can't say enough good things about moral support or husbands.

Technically, Ben does not have cerebral palsy since what he has is not a traumatic brain injury. Of course we got that report earlier in the summer and threw a party in our minds because that was what we worried about him enduring. BUT. I can now confirm that I took my head and planted it firmly in the sand. Ben DOES have a condition called periventricular heterotopia. This means that during first trimester brain development, some of the neurons that should have migrated to the outer part of the brain remained in the ventricular region and formed small masses in that area instead. The cause isn't really identifiable other than it is genetic. From what I can tell, it is likely a gene inherited from me but for which I show no signs.

What this diagnosis means for Ben we can't be sure, but Dr. Rathke is very optimistic. Good. I need people like that to talk me off the ledge. He talks about how remarkable the brain is at rewiring itself. We aren't changing anything about Ben's treatment, and we aren't putting any limits on what he will be able to do. For him to learn to do things like walk and talk, it might take longer that what one thinks long should be. Seriously, it already is... what mom doesn't want to see her baby get up and walk to his big brother? Our doctor stressed that we should not change our assumption that it will happen. Reading and writing might always be difficult for Ben, although we have every reason to hope he will be just as smart as his brother (who is frankly smarter than I am). He might always be clumsy. He might not be. With me as his mother, I'm not going to hold out any false hope on that one. Sorry, Ben. We just don't know. What we do know is that as he grows older, we have to be vigilant in looking for signs of seizure. Ben has had testing that confirms he has not had any prior seizure activity, but this is something that can become prevalent for those with P.H. as time passes. The only other thing I know is that although this is a condition which doesn't get any worse and doesn't necessarily mean Ben won't lead a completely normal life, I find myself reeling because I. can't. fix. it.

So. So. so. so...... I am just going to plaster a smile on my face, partly because I DO have so much for which to be grateful and happy, and partly because I think a smile can help you get started on a difficult journey by carrying you to the place you need to be. Mostly I'll do it because I think Ben is aware enough to sense my attitude and that it has an enormous effect on his progress and willingness to try to do new things, and MOST of all because it will also put a smile on his sweet face.