Worrying does not take away tomorrow’s troubles,
it takes away today’s peace.
Over the past two weeks, I have become my own worst enemy. When we first received Sol’s diagnosis in the Fall, I envisioned him overcoming his injuries and defying all odds. Lately, I’ve been drowning in “what if’s” and seeing only the worse case scenario. That girl who proudly declared there is no normal is gone. My positive attitude has waivered, and instead of focusing on Sol’s many milestones, I’ve focused only on the unknown. The unknown is a pit of despair.
Here’s what’s running through my head lately:
- The pediatric ophthamologist referred us to a specialist because Sol’s left gaze could be caused by CVI. In my mind, that meant he definitely had CVI and would never be able to see normally. (We see the specialist
todaynext Friday and a diagnosis of CVI doesn’t necessary mean that he’ll never be able to see.) - The neonatalogist measured his head circumference and found that his head size is just in the 1 percentile for his age. To my neurotic self, that means he must have microcephaly and his head will never grow. (His neonatalogist is not concerned with his head size. His head is, in fact, growing. Plus, his weight is only in the 10th percentile, so he’s pretty proportionate.)
- His foot twitched once while napping on my lap. Clearly, it was a breakthrough seizure.
The scary thing is that we don’t know what’s going to happen, and to make matters worse, there’s this thing called the Internet that allows you to search diagnoses and outcomes to no end. Those Facebook support groups that are helpful when you have a question end up being just as bad as Google because you see one good outcome or one awful outcome, and you assume the same thing will happen to your child. We don’t know if Sol will be able to sit up on his own, walk, see, talk, or go to school. We don’t know if he’ll receive a diagnosis of cerebral palsy, epilepsy, ADHD, or any of the other issues that commonly arise after a stroke. The uncertainty really sucks.
Sometimes it’s hard to keep faith and trust that everything will be ok. The thing that keeps me going in dark times like these is how far Sol has already come in just 3 months, considering his outcome really didn’t look good in the first few days of his life. He also has shown us that he inherited a bit of his parents’ stubbornness, like when he started chugging down bottles after the speech therapist strongly hinted that he would need a feeding tube. My hope is that his strong-willed nature continues to shine, and that when ever a doctor says he can’t do something, he turns around and says to them, “Oh yeah? Well, watch this!”
Sol the Man 
Dear Camie,
First off a confession. Or two. I have blogged stalked you since the inception of Sol the Man. It is true that I have been known to get a little OCD checking for new updates on Sol-especially in the beginning.
Second confession: I’m COMPLETLY insecure about posting anything on-line as someone could attest to just by looking at my practically nonexistent Facebook posts. Maybe i’m spooked of the grammar nazis? Afraid of the run on sentence or when to start a new paragraph?!?
You are right that worry only takes away peace and the Internet can be a never ending rabbit hole of new problems that you just know for sure are and will happen to you. It’s a bitch. And the more time and energy you feed that bitch the bigger and stronger that bitch gets!
When Cameron was little he would be so sad to leave his dad’s. He would cry and tell me how much he missed him and get in an understandably bad mood. So I started a five minute rule. He would get to cry, complain and just be pure full on miserable for 5 minutes. Then when the 5 mins were up he would stop and start counting his blessings. (Side note-it always started with his grandpa as the #1 blessing) and we would do this all the drive home then drink a chocolate milk.
Maybe this can help you. I realize it’s simple and your not a sad 5 year old but the principal remains the same. Take 5 min a day to be pissed off, cry and feel sorry for yourself then stop and count your blessings. Could you possibly love Sol anymore if his head was the size of a pumpkin? Or if his eyes were perfectly aligned in his head? He is already showing grit and determination and lots of neuroplasticity!
See what drinking a triple shot 16oz Americano with a skosh of cream does to me! I become a comment hog!
Now stop feeding that sad,worrying bitch and squeeze Sol’s little hamhocks for me!
Love you so much
Marie
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Two things: 1. I am kind of like a sad 5 year-old, so your suggestion might suit me perfectly. I’ll give it a go! 2. I love your use of the word “skosh”. It’s one of my favorites.
I love you. Thank you for rooting for Solly and stalking our blog. 🙂
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Cami, Wade and I can’t imagine what you and Mike are going through
But you do know that your Uncle Wade and I have gone through scary times . The best advice we can give you is pray, pray, pray. We love you all and we are praying . Love Kathleen
.
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