Friday, October 16, 2015

Special Needs

There are a whole hell of a lot of things that I have learned since becoming a mother.

One of those things is that I am glad that I did not have expectations about what my child would be like. This turned out to be a good thing since I never would have guessed that my child would have Epilepsy.

Although I am almost always able to put things in perspective and appreciate the fact that Shrimpy's Epilepsy isn't severe, is well managed, and hasn't caused any delays as far as we can tell, sometimes I don't want to be reasonable about it.

Sometimes I wonder what it would have been like to have been typical first-time parents- freaking out about little things and having sleep as the biggest worry. I also dream about what it would have been like to have had two weeks off with Broom and Shrimpy, getting to know one another and letting my body recover from birth.

Instead I was on my feet within the hospital and lost a lot of blood, healed badly, had edema on my feet and hands, a bout with depression, PTSD and nightmares. Instead, I kept my baby within eyesight for longer than I care to admit- first in person, then with a video baby monitor. My biggest worry was that I would miss a seizure, she wouldn't breathe, and she would get brain damage or die. I had a lot of anxiety about all of those things.

Those are hard words to write. But I learned to "feel" her moods and try and just let the risk be. Will it be there for a long, long time. Will it ever go away? I really don't know.

But I also know that there are mothers out there who would be happy to "just" have those worries.

I know I am lucky, and I know that I am strong, as is Shrimpy.
Somehow, through all of that, we managed to breastfeed for 13 months.
Somehow, we managed to not let Epilepsy rule our life.

Do I wonder what life would be like without a bed monitor and video monitor for my Shrimpy? Do I wonder if the medicine made her personality different? Sure.

Luckily, most of the time, I don't wonder if we are doing the right thing because it just feels right.

These things make our family feel good:
- We speak openly about her Epilepsy so that she knows there is nothing to be ashamed of-we are even working on her learning on how to give herself her medicine
- We don't ask for her to be treated differently- but we do avoid her triggers (so, sleep is holy and disco balls are not our friends)
- We don't watch TV with her- screen time is limited to an occasional Sesame Street song on a cell phone
- We keep to a schedule that we try not to make too busy and think twice about when we decide to act outside of it

So, on today, like every other day, I will let myself mourn the life I didn't have while concentrating on the awesome life I do have- with an amazing wife and wonderful child who never ceases to amaze me.

Shrimpy may be special needs in her own way- but I have come to the conclusion that each child has their own special needs and each life has its "normal".

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