This week is mito awareness week. This week 4 more children died of mito.. young children. I did not 'know' any of them personally, but my heart is breaking for thier families..
there was a poem was shared on a fb page that I am part of, and it really as if I could have written it.. And I know I am not the only one who feels this when reading.. We have so much to be thankful for and am happy where we are in our lives right now.. but with each bit of joy, its accompanied by a bit of sadness too...3 years ago, I had no idea that this disease existed, or how common it is.. we must get the word out, let people know that more and more are being diagnosed with this daily. feel free to visit the UMDF for more information and ways to help. We also have a
Ella's research fund if you wish to donate..
anyway, here is the poem..
Normal
Normal is having tears waiting behind every smile when you realize someone
important is missing from all the important events in your family's life.
... Normal for me is trying to decide what to take to the cemetery for Birthdays
Christmas,New Years, Valentine's Day,and Easter.
Normal is feeling like you know how to act and are more comfortable with a
funeral than a wedding or birthday party...yet feeling a stab of pain in your
heart when you smell the flowers and see the casket.
Normal is feeling like you can't sit another minute without getting up and
screaming, because you just don't like to sit through anything.
Normal is not sleeping very well because a thousand what if's & why didn't I's
go through your head constantly.
Normal is reliving that day continuously through your eyes and mind, holding
your head to make it go away.
Normal is having the TV on the minute I walk into the house to have noise,
because the silence is deafening.
Normal is staring at every child who looks like he is my child's age. And then
thinking of the age he would be now and not being able to imagine it. Then
wondering why it is even important to imagine it, because it will never happen.
Normal is every happy event in my life always being backed up with sadness
lurking close behind, because of the hole in my heart.
Normal is telling the story of your child's death as if it were an everyday,
commonplace activity, and then seeing the horror in someone's eyes at how awful
it sounds. And yet realizing it has become a part of my "normal".
Normal is each year coming up with the difficult task of how to honor your
child's memory and his birthday and survive these days. And trying to find the
balloon or flag that fit's the occasion. Happy Birthday? Not really.
Normal is my heart warming and yet sinking at the sight of something special my
child loved. Thinking how he would love it, but how he is not here to enjoy it.
Normal is having some people afraid to mention my child.
Normal is making sure that others remember him.
Normal is after the funeral is over everyone else goes on with their lives, but
we continue to grieve our loss forever.
Normal is weeks, months, and years after the initial shock, the grieving gets
worse sometimes, not better.
Normal is not listening to people compare anything in their life to this loss,
unless they too have lost a child. NOTHING. Even if your child is in the
remotest part of the earth away from you - it doesn't compare. Losing a parent
is horrible, but having to bury your own child is unnatural.
Normal is taking pills, and trying not to cry all day, because I know my mental
health depends on it.
Normal is realizing I do cry everyday.
Normal is disliking jokes about death or funerals, bodies being referred to as
cadavers, when you know they were once someone's loved one.
Normal is being impatient with everything and everyone, but someone stricken
with grief over the loss of your child.
Normal is a new friendship with another grieving mother, talking and crying
together over our children and our new lives.
Normal is not listening to people make excuses for God. "God may have done this
because..." I love God, I know that my child is in heaven, but hearing people
trying to think up excuses as to why healthy children were taken from this earth
is not appreciated and makes absolutely no sense to this grieving mother.
Normal is being too tired to care if you paid the bills, cleaned the house, did
laundry or if there is any food.
Normal is wondering this time whether you are going to say you have three
children or two, because you will never see this person again and it is not
worth explaining that my child is in heaven. And yet when you say you have two
children to avoid that problem, you feel horrible as if you have betrayed your
child.
Normal is avoiding McDonald's and Burger King playgrounds because of small,
happy children that break your heart when you see them.
Normal is asking God why he took your child's life instead of yours and asking
if there even is a God.
Normal is knowing I will never get over this loss, in a day or a million years.
And last of all, Normal is hiding all the things that have become "normal" for
you to feel, so that everyone around you will think that you are "normal".†
