January 19th…

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Foster has a seizure disorder and a neurological disorder (separate disorders) and most of the time, I allow worry about what the future holds with these disorders, consume my mind.

Today, after Clayton went down for his afternoon nap, I sat on the couch and cuddled with Foster. I love this, his head is always so warm and his hair is so soft against my cheek. I could sit like this all day. And as I’m cuddling with Foster, I’m realizing that this is quite likely the easiest and safest time with him. Because he’s not mobile yet and he’s not expected to be mobile yet. This might be the only time in his life when it’s not obvious that milestones haven’t been met or that Foster isn’t an absolutely healthy baby boy. Right now, when Foster has a seizure, he’s either sleeping in my arms or he’s already laying down safely in his bed. I don’t have to worry about him having a seizure in a pool while swimming with friends. I don’t have to worry about him having a seizure while standing or running and injuring himself as he falls to the ground. But I will have to. I can tell myself that this is possibly the best time for us and try to convince myself to enjoy this time and not borrow worry from the future but it’s hard to actually do it. Today though, I did.  I cuddled with my sweet, precious little baby and the only thoughts I had were about how nice he felt in my arms. Warm and soft with his big round eyes that I love so much looking up at me.

He is absolutely adorable, beyond adorable. I don’t know what the future holds for him but today I really, really enjoyed my sweet, teeny, tiny, baby. And I can only hope that I’ll be able to enjoy him as much as is absolutely possible and leave all the worrying for when it’s needed.

Neurological issues aside, he really is an easy baby. Thank God right? I couldn’t handle seizures and colic. When Clayton was two months old, he needed to be held all the time. And not just held but held while walking around. Sitting was not cool with him Clayton. We had so many things for Clay like a baby swing, a vibrating chair etc. that he would never use. He wouldn’t sit in the stroller during strollercize and he’d wake up the second I tried to lay him down for a nap. Clay was a great baby too, this stage didn’t last beyond 4 months but it’s still pretty clear in my mind. Foster LOVES the baby swing and the vibrating chair. He’ll sleep through our entire strollercize class and he never cries. Except after a seizure but that’s a pretty good reason to cry. He also sleeps well through the night. Even if he’s not sleepy at night, he’ll just lay there in his bassinet, suck on his soother (another item Clay wanted nothing to do with) and look around until he falls asleep.  9 out of 10 nights he’ll have a seizure in the middle of the night. Sometimes he has a seizure at midnight, sometimes he doesn’t have one until 3:00am or even 6:30am and apart from waking up to a seizure, he’ll sleep all night long. He really needs his neurological disorders because without them he would actually be perfect haha. Everyone has their issues right.

But I am really enjoying this stage with him. When he was born at only 4 lbs 11 oz. I remember feeling uncomfortable because he was too small and fragile. Plus newborn babies do too many completely normal newborn things that resemble seizure activity. Like for example, they aren’t great at controlling their eye movements. And that’s normal but when your newborn is also having a dozen or more epileptic seizures daily, it’s a bit too much. I remember looking at him literally every time he moved thinking “is it a seizure!?!?” and sometimes it was but sometimes it was just him being a newborn. Now though, at 2 and a half months old, he’s still little (9 lbs 2 oz, 3rd percentile but he’s growing well) and I’m able to distinguish easily when a seizure is happening, it’s very obvious. So I feel like we’re at the point now where we’re a little less stressed and he’s still so cute and little. It’s like this is the newborn stage that I sort of feel like we missed out on when he was first born.

Here’s a couple cute pics of Fuzzy, our nickname for him, I guess it came from Fozzy…

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4 thoughts on “January 19th…

  1. You’re doing well. Proud of you. You are obviously aware of problems ahead and I am sure you and Brett are doing some planning but I applaud your determination “to enjoy this time and not borrow worry from the future”. A good philosophy.

  2. Thank you for being there for Foster, and Clay…(and I’m guessing for Brett)!! What a good, sound philosophy. Blessings, Laurie

  3. We know so much more about seizures and neurological disorders than we ever have before. The best situation for any little one to to be in is a family that loves and nurtures him, educates themselves about his needs and works with community agencies and school boards to provide for him. Foster is already winning in all three ways. I have seen many young people with a variety of similar disorders and they are doing very well. They laugh and play without fear ( only the adults are worried ) They function in regular class settings and get good grades. They are supported and understood by their peers and their teachers. No one will ever know your child the way that you do so advocate for him always. Life happens one day at a time and you are getting more knowledgeable about him and his condition each day. Before long you will be fearless too. He is very blessed to have you as his mother Kendra, you will empower him to be everything he wishes to be.

  4. Kendra, I am so proud of how well you and Brett are handling this and I love how beautifully you describe your special time with Foster. You are wise beyond your years and such a wonderful mother. Clay and Foster are both very lucky to have you though I imagine Foster may become more acutely aware of his good fortune than Clay. Clay will likely be sensitive to and protective of his brother. He will also take his cues from you and Brett. I definitely see a silver lining here. xoxoxo

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