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!”