Living life to the fullest

One of lives enormous tragedies is having a child diagnosed with JHD -- no cure,no hope,no chance. I consider that wrong. What the diagnosis produces is the ability to realise what life is all about, what we should be doing instead of mourning the inevitable is living it. I found it really tough for the 1st year. I cried over and over again; what could be worse than this?

No warning is worse, no idea that your child could ba taken away through some kind of disaster. We never know what tomorrow brings, but my son being diagnosed with JHD made me live for today and have the chance to live a life, realising that it might be our last day of happiness.

I woke most mornings for a long period thinking "Is it today?". Is it worth thinking so negatively?W e should relish every moment, every one is precious. I never coped that greatly; sometimes I hardly coped,I just got through.But one thing that we do have is lots of happy memories,lots of good times. My heart breaks many times when I look at what we have done together, but they are very precious memories, you cant buy them! Life is very tough when you are a caregiver, but it is worth it, every second. I have many great memories of many good times.

The advice that I would give to a caregiver is that life is for the living. Enjoy and savor every bit. Keep your chin up and know that others are thinking of you. I get sad at times that Michael is not there, but very thankful for the very happy times that he was. Good luck to you all.

Gordon Robertson