Overwhelmed

Shasta

Overwhelmed

Shasta
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.

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Sue

Shasta - I sent you a personal message. I hope things are better now than they were for this post.\r\n\r\n--Sue

Denise

Hi Shasta--I just wanted to check in and see how you're holding up. How did it go on Monday?

Roaring Mouse

Dear Shasta,\r\n\r\nGlad you wrote about this and got it out of you. Yes, it is hard when you have to watch someone suffer both from health and missing out on some everything days at the same day. As hard as it is what can you find to smile about it? \r\n\r\nFor the first 5 years of my daughter's life she never had a birthday party because hubby was always in the hospital. In fact 90% of all holidays, birthdays, etc...became forgotten. Instead we would try for little things like it was okay to go and visit, bring a balloon and perhaps a stuffed animal. Later on when I couldn't touch my hubby or speak to him for fear of setting off his pain I learned to smile and be greatful that I still had him at home and could see him.\r\n\r\nCan it be tough...yes. But you have received a gift that not many others will understand and that is of compassion and love in a level much higher then others will ever understand.\r\n\r\nHang in there...and wish Will a Happy Birthday!

Denise

Hi Shasta--I'm sooo glad you've posted today. I hope it felt better to write it out.\r\n\r\nI think the challenge of making it through these dark days can be very, very overwhelming. I understand the anger--because it all does seem so unfair. \r\n\r\nIt's awful to feel helpless and without options or solutions. Your son loves you--and your love for him is very, very special. When you give your love, you really do more than medicine can. \r\n\r\nI hope tomorrow is better for both of you. Please let us know.\r\n\r\nAnd, Happy Birthday to Will!!