A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Tuesday, July 12, 2016


I posted this on the Facebook page I have for this blog.  I don't know where it came from or who wrote it.  It was seen by over 500 people with a bunch of comments and quite a few shares.

You miss the things I haven't done,
the goals not scored, or races won.
The steps my feet have never walked,
the words my lips have never talked.
In my wide eyes you know my fear.
You take my hand and hold me near.
In children, all around you see, the child that I may never be.
Not so able, tough or agile, often tired and much more fragile.
You see the tears I've often cried, and cried them with me, side by side.
Your heart is heavy for my trials, but you wear it well,
with weathered smiles.
I know that you know, I am enough.
But I know the bad days can be tough.
You thank God for giving me to you,
but you're sad for all I cannot do,
and not because you feel let down by me,
but you can't help wonder how I'd be.
if I could do what others do,
like ride a bike or run to you.
You think of all the things I'll miss
first dance, first love,
first date, first kiss.
Yet here I am, as I should be,
not missing out on being me.
Do not fret or worry so
and make your spirit tired with woe.
And when those nights are feeling longer,
lean on me until you're stronger.
Hold my little hand in yours,
peacefully we'll pass the hours.
For all we have is one another,
special child and care worn mother.
Nothing matters more you see,
than seeing all the life in me.
I don't need to be able to,
do the things that others do.
See the words I do not say,
in the smiles I give you everyday.
when I'm tired let me rest,
with my little head against your chest
and for that moment in that peace,
let your loving worries cease.
Look at what I can achieve,
and celebrate me, do not grieve.
Please do not be sad because,
I'm not the child I never was.
different isn't less you know,
and you're the one who told me so.
and some days will be hard to take.
And you'll  feel as though your heart might break.
but we'll bounce back,
we always do.
Because you've got me and I've got you ❤️


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