It’s unfortunately not that common for me to find positivity in my days, especially lately but I had found something yesterday.
My youngest son, the one I nicknamed Boonshka, he still looks like a fat pudgy baby even though he’ll be 2 in August so my nickname sticks even when my husband says I sound like an ass when I say it (I only say it in the home not all out in the public).
According to most of the things I have read and heard, my baby is very behind. I really don’t understand what it is that is supposed to be “wrong” because I don’t think anything about him is incorrect. I haven’t written the post about my pregnancy with him yet because I have no idea how emotional that will be. I’m wary of entering that field alone, unprotected and without proper preparation. Maybe it won’t be hard at all to tell, I have no idea. Currently, he doesn’t walk and he doesn’t talk. He’s been evaluated by two therapists, an ENT, and an auditory specialist. Now they want extensive evaluations possibly followed by a neurological exam.
His first eval was with a speech therapist and an early childhood intervention therapist. He scored very low on his tests but it baffled the therapists. His score was below 50%. I’m not quite sure what it means now although I had asked a lot of questions at that time – I just don’t remember much of the answers. All I remember them saying was I needed to get his hearing checked so they could know how to proceed. All of this stuff is worrisome to me. Because of everything we went through from the moment I found out I was pregnant to the moment we left the hospital with him had been nothing but scares. All the way through. And now this stuff they were telling me.
Kasper and I are scared but we don’t talk about it much. I think we like to keep pretending there’s nothing to worry about or maybe we both know deep down there truly is nothing to worry about[?] It’s very hard to disinguish your gut instincts from your “know better” brain and it’s accomplices: Dr. and google.com. When we do talk about him we always say the same things:
He doesn’t look like he’s not thinking right.
I think he’s just stubborn.
I bet he’ll be doing his own thing in no time.
I’m not sure if that’s positive thinking or unhealthy thinking. How are you supposed to know the difference these days? Everyone has a damn opinion about your situation and your life and that’s why we don’t share our business like this on Facebook; we don’t brag when he finally does something and we don’t cry online when we learn he should be doing something he isn’t. I can’t stand it because I have no one to confide in to ask about these issues with besides doctors.
But since I finally found something that benefits both my son and I and I find myself lacking an audience with whom to share this with I’ll blog it here anonymously. Finally, I can use my blog for its intended purpose! I thought I had more to say about being a hemiparetic parent but it turned out I had a lot more to say about my anxiety and pot smoking habits (lol?).
Like I said, my son will be 2 in August and he doesn’t walk. He’s not overweight but he is large. The theory is the blame lies within the steroids I was on after the craniotomy but I don’t think it was those kinds of steroids. My oldest, Skas, did not take any “second-hand” steroids while I was pregnant and both boys were born 4 years apart exactly the same length and weight: 21 inches and 8 lbs. 21-8 is 13. I’m one of those people, yep. Anyway, Boonshka is fitting a 3T snuggly, he’s very tall and very stocky. Kasper says when he takes him to the store, “No lie, babe, I get stopped at least once every time” by someone telling him to start saving up for his football jerseys. He just barely lowered into the 95th percentile of his age group in the last six months. Since birth he was in the 99th percentile. Skas was always slightly taller than average but Boonshka is quickly meeting him in size. I think this is why he is not walking and I think by not walking he is also stymying his ability to walk! He’s not working off any of the chubbs from his legs and ankles! It’s a circle I can’t get him out of.
Although I have been severely depressed and experiencing high amounts of anxiety throughout my days recently, it is nothing compared to what was going on with me the first year of Boonshka’s life. Having a stroke can be insanely devastating to a person’s mind. In my case I was hit with two very real issues at one time.
- I was suddenly struck down with a drooped and useless left side and because of a lack of insurance 2 months after giving birth, I had to learn how to live with this huge deficit on my own (with Kasper’s support, of course).
- I had to accept the fact that I could not be the mommy for Boonshka that I was for Skas.
Like some people would, I spent more time crying and whining over these two things than I did trying to fix them. I was met with opposition, hurdle followed hurdle, and I had a “caring” family that stuck around for just about long enough to not really do much more than create drama and make me feel not only useless because of my new disabilities but also unable to handle them. All I wanted was to be Boonshka’s mommy. I just wanted to hold him close to me; play with both of his feet and rock him in my arms until he fell asleep. I can never explain how difficult it was to watch my husband always being the one. I’m very grateful he stuck around and rose up to do more than just what was declared his job but I really wanted to be a mommy again. It wasn’t just about the cute things, either. It was about changing diapers, folding his laundry, washing his bottles, and going through the frustration of rocking him to sleep for an hour and then having him wake up the second I tried to lower him into the bassinet or the crib. Those things are not pleasant…unless you are sitting there watching someone else experience those moments with your child. Suddenly, you want that frustration, you crave it.
I really felt, after a while, that it was no longer my place to want these things. I did what I felt was necessary to remind my husband that I wasn’t an invalid. I taught myself how to do as much as I could but it took a lot of time. I seriously had to pace myself because I am prone to migraines and rage and anxiety any time things don’t go as smoothly as I’d prefer or require more work than I want to attempt. I get frustrated very easily and as a result I quit. I feel like everyone else is better off without me yelling at something that I have to learn how to handle in/with my ‘new’ body with my ‘new’ mind. It’s extremely challenging to learn how to live a hemiparetic lifestyle. It’s all about finding tricks to get you through your days. This could range from anything from training your thoughts to be more positive or less angry to everything in your kitchen having silicone on one side because it sticks to your counter better than anything else you’ve come across. Seriously, the silicone sided oven mitts work fantastic if you use put one beneath a bowl to stir something with one hand.
When Boonshka was about a year old I started to clear some of the fog from my head and forced myself to try harder to be the mommy I knew I couldn’t be. This meant facing the truth, the facts. It wasn’t pretty…not one bit. I had spent that first year focusing on me and that was…a book all on it’s own. I had a lot of things to clear out from my past that the flood of my stroke had pushed forward and it was easier to focus on that when I was ignoring the un-reality of my lackluster role of being the mommy I always took for granted when we only had Skas. Even watching Kasper with Bonska was like watching them through a window. I wasn’t really touching what was going on in front of me. I was pressing my palm to the glass pretending I could feel them when I was really focusing on my own reflection. Eventually I removed the glass and I saw my family before me and still, I couldn’t reach them. Why? Because I spent so much time ignoring my hemiparesis that I was nothing but a stiff board.
I thought when I had the stroke and learned that my left body would never be the same that I would always have the gumption to try to prove everyone wrong. Therapists told me stories about former patients that chose to give up and they are not good stories. I kept thinking the obvious:
How could anyone just give up like that? That won’t be me; no way, no how.
But it can be you and it happens very quickly. You don’t want to see. You learn it but you don’t want to retain the knowledge. It’s obvious, it’s not hidden at all; I mean, it’s your body how could it ever be ignored? You find ways when you find denial far more comfortable than admitting you have a serious problem to deal with. I just didn’t want to deal with it and there’s really no other way to explain it.
So here I am now that we are somewhat up to date though not really. My son is almost two and doesn’t walk or talk and I have spent the last two years facing and turning away from the many new and additional facets of myself and my life. I’m not entirely sure of all that I have absorbed and accepted thus far. I’ve said it before and I’m sure I’ll say it plenty more in my future; I’m not real sure if any of this is anything a person can ever truly accept entirely.
Since Boonshka’s evals however long ago, I have tried to focus and analyze him, examining his every move to see if I can find anything ‘wrong’ with him myself. I only notice a few things:
- He walks similar to the way I walk only mirrored: he doesn’t seem to bend his right knee any more than I can bend my left knee and his right ankle is quite stiff. I asked Kasper to cup each foot at the heel and push the foot back like they did for me in P.T. He agreed his right ankle is stiffer than his left.
- The shape of his mouth worries me. It’s difficult to explain because his mouth probably looks completely normal to everyone else. But I find it strange that he’s two and doesn’t talk, has difficulty with the sippy cups that have really hard spouts (we have to buy cheap ones that break all the time because the spouts are made of thinner plastic). And his teeth took a really long time growing in. It just seems…off. I’m probably making that into something it’s not, I’m sure, ha!
I’m worried his walking issues are my fault. I don’t bend my knee, my left foot drags on the tips of its toes and I am always following walls because I lose my balance quite easily. I lack confidence and I see that Boonshka does as well. He lacks quite a bit of confidence.
But this is where the positive thing I found comes in to play
I needed to get Boonshka going; I needed to get myself going. I’m behind as well. I started exercising my left body a little bit again. I actually started to put Pearce’s voice in my head (if no one knows, Pearce was my first physical therapist and I loved him; he was the best P.T I’ve had out of 3). I remind myself constantly again of the wrongs and rights of being hemiparetic. I practice my weight-bearing again, I am aware of every step…or try to be, that’s actually kind of hard to do. You have no idea how many things your body does without being told in one simple step. I, on the other hand, must speak internally to my left body. I get a very quiet and minimal response but it’s there. My knee will bend a little bit more if I actually tell it to, my hip will hike higher and swing out less when I tell it to and my weight will shift more evenly to my left ankle with if I remind myself not to lean with each step but keep my back straight. It all stops at my ankle, though. This has helped me learn to walk down the center of the hall and not hug the wall for safety. It’s also given me a small boost in confidence and it has travelled down into my fat little man who will now hold onto my finger and walk with me through the house. He is feeling my small, teeny, tiny drip of confidence and will trust me enough to walk beside me. We walk so similar! It’s sadly adorable. And I just love it.
I can’t express how wonderful it feels to have his finger in my hand. Anytime I tried before (he walks with Kasper holding his two hands) he would take maybe four steps and then drop on his knees and crawl, leaving me disappointed and ashamed for some reason. He held my hand anytime I left the room and didn’t make me call to him like he is some dog. One of the things I always hated about being a hemiparetic mother is watching him crawl up to Kasper and rise on his knees with hands up. He knew doing that to me would result in absolutely nothing so he learned early there was no reason to come to me for anything more than a crawl in the lap and a couple of minutes of joyless play.
He’s also up to four words now and this is so new to us. These new words started this week. He’s always said ‘ma’ and ‘momomomom’ but it was for everything not a call for mommy. Now he says it to me, looking at me and even when waving to me. He now says ‘dada’ and ‘hi’ and ‘moo’ too. Why moo? I have no idea but whatever, he likes cows, I can dig that. I like milk. He has been trying to add words too. I thought I heard a ‘juice’ yesterday and Skas was excited because he “swears mommy, [Boonshka] just told me ‘yeah.'”
It’s amazing to me. Maybe we were right all along and he is just stubborn. He’s stubborn and destructive in every other way, why not with his talking and walking too? Is that even possible? I’m just elated that progress is being made by both of us and I would like to think that maybe, just maybe, my small improvements are helping him improve. It would help me brush off the last of this recent bout of depression…that’d be nice.