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Friday, March 4, 2016

Deeply Loved.

Hellllo from the other siiiiiide!

I guess I should update.

Life is just life. We're in it. We're living it. We're doing it. It just goes by so fast. But everything is so...normal. What a wonderful word. It's our normal. So normal I don't even consider it worth writing about. So I don't. 

That's a gift, though. Things being so normal, routine, and almost boring that I have no dramatics to write about! 

Christian is a beautiful, gorgeous, perfect (yes, perfect) gift from God. He has this secret, hidden personality and you only get a glimpse if you're one of the cool kids. If he doesn't know you, you don't know him. He won't show himself to you. Not until he knows who you are. Or if he feels like it. Seven year olds. 

He smiles. He uses his voice A LOT. He even responds with his voice, too. I'm pretty sure his entire life goal would be for me to hold him at every moment of the day. 

He's a happy boy. So content and lovely. 

But all this gushing isn't to say we haven't had some challenges. Christian's seizures picked up slightly around November. He has a pattern of this over winter months, it seems. And I can't really pinpoint whether it was because the battery on his VNS implant was winding down or if it was just that time of year that seizures come back to visit. Either way, it didn't matter. It was all happening at the same time.

So Christian had a surgery during winter break. It was very minor. They opened his old scar and replaced his VNS battery and then closed him back up. We actually ended up using a strong sedative and a local anesthesia because the procedure was so minor and short that I didn't feel it was necessary for him to be put under, intubated, and then have to wake back up all for a 10 minute procedure. The doctors agreed and we were in and out of there.

He bounced back right away but it was over the next two weeks afterward or so his seizures were hard. He would cry through the entire seizure. With tears running down his face. I'm not entirely sure that it was from pain, though, because the crying would start at the beginning of the seizure and stop abruptly as if nothing ever happened. So it could have been that it was just that part of the brain that handles emotions that was seizing. 

I really think it was a perfect storm to get those seizure riled up. Time of year - it happens every year around the same time. A surgery, recovery, and pain and we had some big scary seizures. They finally subsided for good when I added an extra supplement of fish oil to his blends. Look, I'm not saying fish oil is the cure for seizures. But every time I reintroduce fish oil to Christian, especially during a harsh seizure period, they go away. I don't know. Call me crazy. Maybe it's a coincidence but I'll take it. Olive oil, MCT oil, fish oil - these are all good things for the brain. Watch that old movie Lorenzo's Oil. Interesting stuff.

And then Christian got a little cold. A very minor respiratory thing that kept him out of school for a week. He bounced back just fine but something happens to him when he comes back from being sick. It's like sickness is a reset button for him. It's strange but wonderful! When he finally recovers from being sick he is all of the sudden way more alert, looking at everything vocalizing, there are no seizures, he's happy, makes new sounds...I can't explain it. 

So he's good now. No seizures. Remnants of a cough but nothing he can't handle and nothing that needs suctioning.

He's good. We're good. I'm grateful every day. 

I guess we've moved on. I sometimes feel bad that I don't reach out to others new to this journey. We're in two totally different places. Completely different. I remember being in that parent's shoes and feeling sheer desperation. I also remember reading something about enjoying your child with special needs while they're little and not taking it for granted. At the time I was like - What the hell am I enjoying here?! It's going to get better, right?!!!! RIGHT?!!!"

If I only knew then what I know now. Not that it didn't get "better." But when I look at those picture of baby Christian with his little trache I think - I wish I would've taken the time to enjoy holding his little body instead of being sad about it all the time. But you don't know. You just don't know any better.

I enjoy it now! He's the best snuggler in ALL THE LAND!

But as for connecting with new families, more often than not, they don't want what I'm selling. They want a cure. And I can't give them magical answers. They don't want to wait for time to pass and they don't want to accept. I get it. So I wish them well and I'm on my joyful and merry way. 

What's the cure? What's the magic therapy? What will makes things better? 

Time. And Acceptance. And more time. And praying. And some more time. 

There's also love. That helps a lot. Loving your perfect baby, loving your family, loving your spouse, loving those who help you in times of need, loving good friends, loving life. 

I'm not going to sit here and tell you about this sad life with a child with special needs. You've got the wrong blog and the wrong mom for that. And maybe I don't fit in because I'm not sad enough. But I'm just not sad. Christian is happy and every day with him is a blessed day. He might be happier than most people out there! He is protected and loved by us. He travels and experiences things. He's not affected by heartbreak or bullying. He is only loved. 

Deeply loved.

Don't you just want to squeeze him???

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