Son with Rare Genetic Disease

[bkscher72]

My 12 year old son has a rare genetic disease.  The easiest way to describe it is to liken it to a childhood form of ALS.  Since he was about 6 he has really started the decline to where he is today.  Two years ago had a tracheostomy put in and has been on a ventilator for support since.  Has no movement of arms and legs.  Just recovered from spinal fusion surgery because his scoliosis was over 80+ degrees.  Doctors do not know exactly when he will pass away but he will at some point.  Just looking to talk with others that have had a child go through an illness that took your child from you.  How you dealt with it day in and day out?  And how you coped after.  I certainly have my good days and my bad days.  Just looking for support.

[ktlearn--Stephen's Mom]

Hi, Brian. You responded to my post as a new member on another thread.

 

I am so sorry to hear about your son. I can only imagine how hard it must be and how much pain you are in, anticipating his passing.

 

You asked what we do to cope.....I read. Right after my son passed away suddenly, I began to read books on heaven (because I do believe life goes on after the physical body dies and that there is a heaven where our souls spend eternity with God), grieving, and books by parents who have lost children. I have probably read nearly 20 - 30 books. If you are a reader and find solace in that, I can recommend the best ones I found in each category.

 

I also journal honestly my feelings and emotions. I have one journal also where I write my son Stephen letters. That helps me still to feel the connection with him

 

As a mom, I am used to doing things for my kids. We had his memorial service about two months after he passed away, so I took care of his financial business (his taxes, etc.) and also prepared the slideshow and  the eulogy which I gave. It made me feel like I was still doing things for him. Once the memorial service was over, I found myself kind of depressed. I think it was because I couldn't "do" anything more for him.

 

I also knew I needed community to help me, so I looked into a program called Grief Share. It is a national program, and you can find a local place near you where it is being held by looking online. It is Christan-based and is usually held at a church. It is a 13-week program, but you can go through it as many times as you want/need to. There's a workbook, and each session consists of going over the "homework" for the week before (5 days worth...each day's work takes about 5 - 10 minutes), watching a video for that week, and then discussing it. Most of the members in my group have lost a spouse, but one has also lost a son. I like being with them because they "get" it. I can say anything, and I am not judged. The support is wonderful

 

I have also heard of but have not yet attended a Compassionate Friends meeting. This group is for bereaved parents, grandparents, and siblings.

 

Do you have other children?

 

I too have good days and bad ones. Most of my days are good and sometimes I wonder if Stephen's passing hasn't fully hit me or not, but then the bad days roll in. As many say, I take it a day at a time, and I know that the darkest days won't last forever.

 

Stephen's birthday is in a couple of weeks. This will be my first without him. I am trying to anticipate what I can do to celebrate him. I know that I used to take joy in buying him gifts for his birthday and Christmas, and I know it will hurt to not....like I'm not thinking of him, so I have decided to buy savings bonds for my only grandson (Stephen's nephew) with the money I would have spent on Stephen. I will be babysitting my grandson on Stephen's birthday, so I think we might go get a cupcake and "celebrate" his Uncle Stephen. Just a few thoughts so far...

 

Let me know what I can do to help. You have my prayers and so does your precious son.

 

Karen

[bkscher72]

Good morniing Karen.  Sorry to have duplicated myself.  I have a big tendency to do that.  So much going on with life that I can never keep things straight.  I dont know who I have replied to, who I have told things to and exactly what I have shared at times.  But thank you for your kind words and at some point I would love to get a list of whatever books you have read.  Currently, the support we have outside family has been amazing.  Ian is followed by an organization called Gilchrist which is a hospice center.  He has been on their service since coming home from the hospital back in 2013.  Up until the beginning of this year he was basically on their pallative care.  We decided to move him to hospice care, even though he is still at home for now, because we have seen some more decline in him.  Also, with that we had made some very difficult decisions as to move forward with his care.  Bascially we have decided to not take him to the hospital if he gets sick.  We are going to do our best to manage it at home.  Ian is able to still eat by mouth but as that declines, we are not going to give him any supplements such as Pediasure through his G Tube.  He also is a DNR.  We figured it was so unfair of us to do such things as this just to keep him alive.  He has been through so much during his short 12 years that its not fair.  When the time comes he deserves to be made comfortable and allowed to obtain the peace he needs.

 

Anyway, thanks again for your response and always kinds words.  Have a good day and "talk" soon.

 

Brian

[ktlearn--Stephen's Mom]

Brian, those are tough decisions to be sure, but so lovingly made.

 

Is that Ian in your profile picture? He is beautiful! Such a precious smile.

[bkscher72]

Evening Karen. Yes that is Ian and myself at a Cub Scout function. Many years ago but one of my absolute favorites of the two of us. I also put a picture of him with his twin sister Becca when I first posted on here.