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