Friday, September 08, 2017

My youngest son

age 33.  A lifetime of grand mal seizures that could not be controlled by medications.  He had a major seizure, crashed on concrete, split his skull wide open.  He was probably dead at the scene, but they kept him alive, put him on life support and he succumbed last night.

I am still simply numb.  Can't think.  Can't process it.  Can't function.  Completely unexpected.  But it wasn't.  I have known since the day he was diagnosed with this disorder that he would most likely die from a seizure caused accident.  Still - you are never prepared.

I have another son who is 38 and when I told him, he was devastated.  Beyond broken.  So now I am very concerned that he might commit suicide.  I could not handle that.  I think I would simply stop breathing.

My son's seizures have an unknown etiology.  They was no spike in his brain waves so he was never diagnosed with epilepsy.  He was always on the highest dose of dilantin with other meds since he was 16....nothing ever controlled the seizures.

He had his first grand mal seizure when he was 8 months old.  The day after he had his first DPT shot.  Of course, we had not clue and continued to give him the series of DPT shots required.  I have long suspected they are the cause of his seizure disorder as he was perfectly healthy prior to that day.

As he grew older, the seizures grew greater and the more meds they put him on to try and control them.  The idea was to slow down the brain waves to prevent the seizures.  But that also slows down every other brain function including learning.  He never progressed beyond the IQ of a 5th grader.  There was brain damage in some of the areas of his brain by the time he was 16.  They could not tell me if the damage was due to the seizures, or if it had always been there and that's what caused the seizures.

When he was about 17, we were at Walmart.  He had a seizure that caused his entire body to fall against a huge shoe rack and it tumbled over.  The force of his body when he was in the middle of a seizure was always something to witness.  He had no control.  Most often he was unconscious while his body contorted and flew in every direction.

But now, all that is over.

I found out just how well my tear ducts work.  I don't think I stopped crying for 24 hours after I found out he was on life support.  He was about 1200 miles away and I could not get there before they were going to disconnect him.  He is the child of a previous marriage and his father and 2 half sisters were with him.  I was here with my other son.

Nothing in life is easy, but this was devastating.  No one should lose their son.  But I know it happens way too often.  I am comforted that he is no longer in pain and that there will be no more seizures.  My heart has been shattered and I know that I will never be the same.  This makes diabetes look like a piece of cake.   And yes, I know that it's not.

We have been remembering the funny little things he did as a child.  Going through photos,  pouring over memories.  We will heal in time.  But we will never be the same.

Please pray for my older son that he can pull through this.  He is not responding to texts or phone calls.  I am praying that he just needs some time alone.

I know I'm still in shock.  I know the phases of grief.  Perhaps if there is an ounce of good is that I am old enough and have gone through enough loss in my life that I understand what has to happen and I know what to expect.  Not unlike grieving the loss of good health when one is diagnosed with diabetes or any other problem.

Much love to each of you.  Hug those that you love.  You just never know when it will be the last time.

DW

2 comments:

melinda said...

Prayers for you, your son & family.

Managing said...

I'm so sorry DW!
I will pray for your son and hope that by now he has settled a little bit emotionally and at least is talking to you, so you can help him through this.
It's true that being older and having gone through loss teaches you much about how you deal with it and how you might deal with it in the future.
It is also true that your honest journaling helps those of us who are dealing with those insane anger outbursts and weird behavior and physical symptoms that so many Drs deny are Diabetic related.
If it weren't for you, I would question if I was just imagining that Diabetes is deteriorating my husband in all the ways I see but he denies and Drs act like they've never heard of, etc etc.
One of my friends who helped her husband through his dying bought an RV, put it in the yard and lived in it when things got too weird or violent for her to be in the same house as him, but she could still be close enough to come fast when he really needed her.
It's so strange how life's twists and turns take us places we never expected.
I've learned how important it is that you stand your ground and not let him treat you badly.
Those of us who decide not to give up are forced to search for and learn ways to do what it is we decide is needed. And so we get skills like patience, toughness, perspective and gratitude, etc.
Your resiliency and patience is inspiring to me, and I know that I've been able to deal with my situation and my husband better because of your sharing with us.
Bless you DW.
I will keep you and your son and husband in my prayers.
Managing