When people hear, my son had a stroke, the most common response is "but is he ok now?". Erm, define "ok". Do you mean "will he have another stroke?" (unlikely unless platelets drop again). So yeah, he's ok. He also breathes by himself, he's not attached to machines, he isn't having any seizures and he isn't fed through a tube. His right hand is hardly ever in a fist these days, he's intelligent, social, loves to jump (recently off furniture) and he runs like the wind.
Or do you mean "does he show any signs he had a stroke?". The answer to this, is "yes" although, we're very pleased with all the improvements he's made. He does have a squinty eye, a slight limp and a hand which doesn't work properly but he's ok. He drops things alot and he struggles a lot with two handed activities. I never realized just how many tasks require two hands, even coloring is difficult because righty isn't strong enough to hold the paper still. His language is a bit delayed, he needs surgery to his eye and Botox in his hand/wrist once he's older.
Most people don't want to hear the latter and are quick to try and remedy the awkwardness by telling me how adaptive children's brains are (No way. Really?) or the good ol' "he'll get there". I don't mean to sound like a snarly, sarcastic cow but it just starts to grate after awhile. It's true, infants brains are remarkably adept, we are lucky the stroke happened at a young age so we can utilize Neuro plasticity to its full. However, we can't perform miracles. A fellow stroke mum, summed it up beautifully in these words "it doesn't matter how young you are no one survives a stroke unscathed".
(Note: Sometimes it's ok to just say "that's shit" rather than state the bleeding obvious)
I often think back to the day of Maxs stroke, and it sends shivers down my spine remembering the absolute terror I felt. The first few hours were hell. Waiting for various test results was the worst part. Outwardly, I was calm, inwardly I was screaming and throwing myself on the floor. I kept wishing I could cry, I should've been crying, I'm not sure why, but I couldn't. I often wonder if the nurses thought I was a heartless mole.
When Max was 7 months old, he started doing the Snowdrop Program for Brain Injured Children. I could explain what it's all about, but since I'd only be rehashing lines from the website, here's the link to the website instead Snowdrop. In Lunch Today will be Roast Beef with a side of Vestibular Stminukation. I wrote in depth about some of the therapy I do with Max.
When he started the program he didn't even know he had a right arm, he was disinterested in the world and he was so spaced out, I could bang pots and pans a meter away and he paid zero attention, even though his hearing was perfect. After only a few months, he was alert, motivated and surprised everyone by crawling! Although he was aware of 'Mr Righty', his arm had no co-ordination whatsoever, occasionally he'd reach for things and miss it by yards. Nowadays, he has pretty good accuracy using righty to pick things up but his fingers are so stiff, and his muscles contract at all the wrong moments.
Max recently had his latest assessment with Snowdrop and he's now classed as 'developmentally superior' in many aspects. One amazing day last week, I got the email from Andrew informing me that Max had graduated from the Snowdrop Program. We will still stay in close contact to keep working on Mr Righty but we'll no longer be doing the full program. It's a pretty phenomenal feeling to know we've come such a long way. I speak online with some of the new parents online, people who are standing in the despairing place I once stood.
In closing, I want to share with you, a snippet of the email from Andrew. I'm proud as hell of Max and I'm so proud of myself for not giving up, although many times I wanted too. It's true what they say. You don't realize how strong you are, until being strong is the only option you've got.