A CHALLENGING YEAR
Every year I marvel at the fact that my first born is another year older. Perhaps it’s because every year means growth. Maybe it’s because I’m just so happy she’s alive and with us. Or maybe it’s because it’s a true realization that time is passing so quickly. Whatever the reason, this past year has been one of the most challenging since the first.
A ROUGH START
I’ve made it no secret, Jac has been a handful from the beginning. Not of her own doing of course. She was born via an emergency c-section and began having seizures within hours of her birth quickly getting her transferred to the nearest NICU. We were informed she had brain damage around day 6 or 7 and were told at that time that she might not walk, talk, see, or hear. It was gut wrenching, and I was in complete denial that anything could be wrong with our precious girl.
After moving a week after her discharge we had to navigate a new area with new doctors and the realization that our child was not “normal” or “typical” and would need more help than the average child.
She was making progress in her therapies and then began preschool when she was three. We had a great support system of teachers, therapists, and doctors in New York. When she was five we moved to North Carolina. There we also had a great team of people who really helped her progress.
BEGINNING OF TROUBLE
And then we moved to Georgia. The system here was so bad here that eventually I made the decision to home school. We were cruising along in life. Things were “okay”. She was meeting goals in therapy and learning new things…then came October.
She started having what the doctors suspected were partial complex seizures and since she’d been on Keppra before (as an infant) I thought that might be a good option. As an infant, we didn’t see personality changes (obviously), but as a 10 year old, it was awful! We decided to see how she did off the meds.
We took 6 weeks to bring her down to no more medication. Sunday, May 19th was her last day. Tuesday, May 21st, I had decided to have a lazy day. We were done with school for the Summer and I thought we could spend the day being lazy. At approximately 1:00 pm, our lazy day came to a screeching halt.
A TRULY DISTURBING EVENT: WHICH MADE IT A CHALLENGING YEAR
Jacqueline came down the stairs making weird jerking motions, strange sounds that sounded like she was gasping for air, and drooling and foaming at the mouth…she was having the worst seizure I’d ever seen her have. I immediately dialed 9-1-1 and they were there quickly to take her to Memorial. (Bryan County has an incredible emergency service team and Memorial, which we are no strangers to, is equally incredible.)
She began taking a new medication that day, Trileptol. For the first month or so, all was right with the world. No seizure activity and she was my Jac again. Everything was good!…until June when i noticed a strange rash. It took a couple of visits to the doctor but they determined it was due to the medication. So they changed the meds. It was too late though and a horrible rash took over her body which landed her in the hospital for a couple of days.
I DON’T KNOW IF THERE WILL EVER BE A “NORMAL”
So here we are, getting ready to turn 11 tomorrow, and I wonder what the next year holds for her. I want so badly for things to be “normal”, but I don’t think they ever will be. A challenging year is just a sign of how challenging her life has been and most likely will continue to be. There’s the wondering if she will be able to grow up, learn how to drive, get a job, get married, and have children…but I’m not quite sure that will ever happen either. I don’t know the future, but I do know that I will do everything in my power to make sure she always knows she’s loved and taken care of the best way possible. I want to give her opportunities and promise of independence, but only time will tell.
So Happy Birthday to my big girl! While this has been a challenging year, I can’t believe we’ve made it as far as we have. You’ve been given a difficult path in life, but we don’t do things in our own strength, we do them in His strength. I love you, and I’m so proud of all you’ve worked for and accomplished.💕
Until next time…