Seven months, that’s how long its been since I last updated this blog. Crazy how time flies with a newborn. In that time we’ve gone through the fear of an unexpected intestinal surgery. We’ve survived heart surgery with complications. And we’ve had our highest highs and lowest lows.
I say we, because Nick and I, plus little Jellybean – well, we’ve survived these events together. Jellybean is the true warrior, its her body that’s been on the line. But Nick and I, we’re the parents. So we’re the ones that worry and pray, praise and cry, laugh and live. So, when we received that scary diagnosis – we, as a family, stuttered.
In the hours, days, weeks and months since I’ve both shrugged off the diagnosis and spent minutes staring Jellybean in the face. Looking for the signs, the symptoms so that I can be HER warrior. Special aid where I can get it, therapy as needed, and more. Dr. Google is both helpful and terrifying.
So what does she have?
The day of Jellybean’s heart surgery, we found out (only moments after the elation that arrived with the news that she’d made it through surgery with flying colors) that she was diagnosed with a rare genetic deletion of the 11 chromosome. Otherwise known as Jacobsen Syndrome. A rare, complex and life-changing diagnosis. Instead of celebrating that our daughter had finally overcome everything we were sent into a tailspin of her life’s suddenly limited outcome.
To this day, I wish I had never met that doctor.
And I feel guilty for feeling that way, because it makes me feel as though I fail to accept Jellybean for all that she is. I have so much more to say, but for the time being I’ll leave this as what it is. My daughter made it, she’s a warrior. So I will be too.