Happy Birthday my Angel Child 31.8.1974 – 18.1.2013

Happy birthday my precious Angel Child.

I wonder whether you were excited about your birthday?  Do you still celebrate your birthdays or do you celebrate the day your pain and suffering ended?

I miss you so much, sweetheart.  Although I still cry for you almost every day I honor your legacy every single day of my life.  What a community changer you were…  Through your suffering, almost 1400 people have received love, dignity, and quality of life.

Would I rather have had a healthy child?  YES!!!!  But this was our destiny and out of our control.  Your suffering led us onto a path that we would not have chosen voluntarily.

So my little Angel, tonight we will have a dinner and talk about you the entire evening.  We will do your birthday eulogy as we did all the years you lived.  We will talk about your stoic bravery.  We will laugh about your idiosyncrasies, your inability to remember or tell a joke.  We will remember your ability to smile through your pain.  We will hear your voice saying “I am fine”.

We will cry for your empty seat at the table and the huge void in our hearts.

Someone asked me whether it ever gets any easier and I could only say “No”.

The pain has not gone away.  The pain will never go away.  The longing for another “tomorrow with you” will never go away…  Every morning is a stark reminder that another “tomorrow has broken”.

But Baby Girl, I looked at old photos of you tonight and the dreadful pain in your eyes was a harsh reminder of your suffering.  I am seldom not awake at 2 O Clock in the morning…injection time.  I am haunted by your whimpers of pain, your tears when you say “Help me, Mommy.  I cannot handle the pain anymore”.  My feelings of helplessness.

I was talking to someone yesterday (about you) and she said “I could never see my child in so much pain.  I would take him out.  I would not be able to handle it…”

Did I ever consider it?  You know I did.  You begged me to do it.  But in the dark of night, there was always a remote possibility that “tomorrow” would be better.  Sometimes it was.

But today is not about me and my grief.  Today is the reminder of the happiest day of my life – the day I held you in my arms for the first time.  Know, that I will always love you.  .

You will always be the highlight of my life – my greatest joy.  Know that I am at peace that your suffering is over.

But always know that I wish your life was different.

I hope and pray that you have found the peace that eternity is supposed to bring

Happy birthday my angel.