Faye B. Emerson here. Hope this finds you well.
We are surviving. That's a pretty good description of our lives, how things have been as of late. Our son, Nicholas, who just turned five last week, continues to beat the odds, continues to try to survive another day, another medical crisis. It's not easy parenting a child who has so many needs.
He can't help how he is; yet I feel guilty because he's taking time away from our other two children, both girls, who deserve my attention as well instead of being entirely focused on the care of the lastborn child.
Nicholas has Canavan disease. His health has deterioated to a point to where he cannot walk, talk, see, or even do anything for himself. Sometimes he has problems that creep up and throw our world in total disarray, especially when he gets sick and/or ends up in the hospital for what seems like the umpteenth time.
Like last week, as an example. He decided to have a spell of tachycardia, or rapid heartbeat; in fact, it got so bad, he turned grey and started having trouble breathing; we had to call the ambulance to cart him off to the hospital. Scared the living hell out of all of us. He ended up staying in the hospital for three days. He's now back home, healthy, happy, and making us worry all the more about what tomorrow might bring. We've had more than enough excitement from him recently; we don't need any more!
Nicholas has been registered for kindergarten. He will start the day after Labor Day. He will be going to a school for children who have special needs; he will go half days. If he does well, he might graduate to full days; there will be nurses and doctors on staff, so if a problem comes up, they can take care of it immediately. I just hope he doesn't end up in the hospital while he's in school; there's nothing worse than getting a call from the hospital, telling you that your child has been rushed there by ambulance!
I've had too many of those to even continue counting; I've stopped counting because it's happened many more times than I'd like to admit!
The weather here has been stormy; however, the storms have finally moved on. Now it's sunny; however, by the middle of next week it's supposed to be in the low to mid nineties, when we here in Nashville have been enjoying cooler than normal temps in the seventies and eighties. No rain either until maybe a week or so from now, when the next cold front comes rolling in.
Ellen and Renate, the two girls, are busy getting their school supplies, now that they've gone on sale. They are looking forward to school, seeing their friends, trying out their new school supplies. They have always enjoyed school. And Ellen and Renate will no doubt be playing soccer again; they were on the soccer team last year and they did pretty good. Maybe this year they will do even better, possibly even reach the semi finals or maybe the finals, if all goes well! All one can do is hope and pray that this comes to pass!
Well, Nicholas is cooing again,so I have to see what he wants, then take care of it. I will write in here again soon; until then, this is Faye Emerson saying so long and God bless!
~Love, your friend, Faye B. of Tennessee. :)
*To be continued.*
