I haven’t been on this site much lately. Life has become too busy, difficult and overwhelming for me. My son (caree) suffers from a seizure disorder (Lennox-Gastaut Syndrome) that has, so far, been untreatable. Yes, he’s on lots of meds for it but none of them work. This has been on going, for years, 10 years. He’s also a kidney transplant recipient so he can’t take most of the major seizure control drugs (like Dilantin or phenobarbitol). They could potentially affect his kidney function. So we bide our time balancing the scale–seizure control vs. kidney function.
As I write this, he lays sleeping the day away. He had a “flurry of seizures” (his doc’s words, not mine) this morning that put him in what I like to call “seizure sleep.” He does this occasionally. His doctor says it’s his way to “reset his brain.” We’re not supposed to try to wake him up or stimulate him with noise or touch. It’s hard to watch. I hate it! I sit here, unable to help him. Tomorrow is his 11th birthday. I hope he is alert enough to enjoy it.
I know I’ll get out of this dark hole I’ve put myself in. My desire to do my “hobby stuff” is gone. My creativity has vanished. I’m stuck in the anger phase of grieving. I grieve the loss of my son’s normal life. There is so much more to this story. A part that involves me and genetics. That part I suppress. That part I’m really angry about. I’m overwhelmed.
- On Pneumonia Watch (caregiving.com)
- My Own Worst Enemy (caregiving.com)
- “It’s Too Hard for You” (caregiving.com)
- I Can’t Play Piano When My Fingers Aren’t Happy (caregiving.com)
- My Life in Holland (caregiving.com)
- Good News, Bad News or the Elephant Stomped on Him (caregiving.com)
- The Checklist (caregiving.com)
- Grieving Over Life’s Sudden-ness (caregiving.com)