What To Do When You Realise You Will Outlive Your Child

That is a brutal paragraph to write, yet I have to write it, for it may help others.

Two events have just happened that bring it all back to me, the fact that if we live longer than our son, it’s either a miracle that he has lived that long or a tragedy and either me or my wife have died young.

The first event was googling my son’s condition again.

I was intrigued, as he has a few other medical issues, and I wanted to see if anything was written about them on any journals or support groups that I follow.

I was scrolling away and came across a question about someone’s average life expectancy with my son’s syndrome. Of course, I opened it with bated breath, hoping for a cheerful, 40 or 50 years old and a story about how they typically get a job and raise a family and produce children. I was delusional and knew this wasn’t going to be the case, but it’s nice to dream.

It is 7.5 years old.

My son’s age now, that fact hit me hard.

We have always been fully aware of him having a shorter life expectancy, and from the ages of 0–4, we had resuscitated him a dozen times. His body was giving up on him back then; however, he has since got stronger and better able to cope with the triggers that caused him to have these episodes. He has oxygen 24/7 to help deal with the problems too.

The truth is we had forgotten what it might be like to lose him, and we had gotten so used to our boy and everything we have fought for, for him. He is entirely normal to us, and it’s easy to forget over the years all those morbid thoughts that we used to have. We had almost accepted losing him back then and made our peace with it.

To have all these emotions resurface so abruptly is overwhelming, and it puts everything he goes through and how he has shaped our lives into perspective.

. . .

The second event was recently reading what a doctor had written when discussing him with another medical professional from the hospice he stays at.

Q: Would you be surprised if this child died within the next 12 months?
A: Categorically, no.

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All I want to do after writing that is to find him and give him the biggest hug, however, I know he would hate that, and he would most likely pull my hair or try to pinch my arm as he doesn’t like surprises or praise.

I don’t want to forget my son will have a shorter life than me, and I will do my best to engrain into my subconscious so when he is having a meltdown and screaming at everyone, or when he has just broken the screen of another tablet by smashing his head against it. I can help and guide him, as I know when he is gone I will miss the stinging of my arms from all the scratches he gave me that day. And try and wish back the constant headache he used to give me.

I’ve written before about the journey myself and he has been on and my first article really hits home about what we have been through and continue to go through.

. . .

My main objective now is to love every moment, no matter how hard, with him and our family. Every event and picture I look back on brings me great joy, and in the future, I will be taking more pictures and creating more memories. Not the desperate type of ‘happy’ families. But just more of him and his smile and the smiles he creates on other people.