It's that time again. I'm starting to hear that the CHD community is gearing up for Awareness Week. I used to love Awareness Week. This year, not so much. I'm tired. Weary. I just don't feel like participating. I know this may offend many heart moms out there that tirelessly campaign for more funding for research, more awareness about what a CHD is and saving lives. I greatly appreciate those of you that continue this endless fight. I'm wrung out. I've tasted the bitterness of watching my child die and repeatedly watched this past year as other families I've grown to love have tasted too.
I'm tired of reliving the pain over and over again every time I try to raise a little awareness. I'm tired of telling Tommy's story and seeing the look of horror on people's faces as they try to come up with some phrase, something clever to change the subject. They tell me they're sooo, sooo sorry, that they just can't imagine my pain. They wonder out loud how I get up each day. Tsk, tsk, tsk. Then they give their little heart sticker to their 3 year old to eat and go about their day. When they leave, they forget all about me and I'm struggling to psych myself up to tell the next person the same heart wrenching story again.
I CAN'T. I want to be NORMAL. I am sick and tired of pity. I know I could not comprehend the loss of a child until I had one that could die any day and when he did, I realized I never understood completely. I see that a typical person would not comprehend either. Or they're the type to one-up me with so and so's kid was sick, died, had a murmur, related to someone with _______.
On the other hand, I will NEVER be normal. I will always be the mom of a medically fragile son with multiple heart defects who died suddenly while I watched him take his last breath. I'm shattered, fractured, put back together with pieces missing. I suspect deep down inside the reason I dyed my hair pink was to take the focus off my broken heart.
I may change my mind about raising awareness. I doubt it. I can't bring myself to even consider going to the heart walk this year. It is like being stabbed over and over again every time I see a little one running around, laughing and playing, knowing they survived. I'm happy, THRILLED for them and their family but the pain of missing my own little one laughing and playing hurts more than I can describe. Then there is seeing the ones that are a little sicker, maybe on oxygen or a feeding tube. Reliving the memories. I falter between cherishing and loathing those memories. How can I be thankful for something that hurts me so much and yet at the same time be thankful I have those same memories?
It's been 2 years, 4 months, 2 weeks. I'm not much better today than I was the day I said goodbye to Tommy. In some ways, I'm stronger, in other ways, I'm a wreck. My memory is shot. I forget stuff all the time now. It really stinks to forget to pay a bill, but not be able to forget the last sound my child made. I don't think I am bitter over his death. Just tired of the reminders. Tired of reliving it.
So, for now, I will not be raising any awareness. I applaud those of you that do! You are my heroes. For those of you that are walking the path of having lost your child and STILL raise awareness, I am in awe of you.
Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries
4 comments:
Rene, you gotta do what you gotta do. You have to take care of YOU first. You have to take care of you and the boys, first. Anyone, who thinks otherwise, shame on them. None of us are superwomen, and when we try, all it does is drag us down further. Do not feel guilty. Don't give it another thought. Take care of you, and yours. Let the awareness fall on someone else. You've done a lot, to make persons aware. Me, I'm aware of CHD in kids because of you. It will get passed on, you've started many fires that will continue to burn for always.
I want Rene, to take care of Rene. So that Rene can take care of Rob and the boys.
I understand completely, Rene. Don't worry about not coming to the Walk at all. I don't know if I would be able to continue doing it if Isaiah were gone. My husband said we would no longer be involved. You never know how you would feel if/when it happens to you.
You and your family are always in my thoughts and prayers. If you do change your mind and need help getting here, just give me a call 502-463-2450. Take care.
Katie Columbia
cp:IsaiahColumbia
www.GodsSpecialHearts.org
Let go of the guilt over this Rene. Maybe some day years from now you may feel differently, when the pain isn't so fresh. Nobody would expect you to continue fund raising for the condition that took your child. (((HUGS)))
I still remember the morning I woke up and read the email from you telling me Tommy had passed away. I think my own heart stopped for a moment. The tears start flowing down my face just thinking about it. My heart still aches for you and all that you lost. He was a very special, precious little boy that overcame so very many obstacles. And, even though I only met him through your anecdotes and the videos you posted, I'm glad for any chance I had to be a part of his life.
People, in their blissful innocence of the loss of a child, have no idea how to react or respond in these situations, so they change the subject, or they offer general platitudes about how sorry they are. They don't mean to be insensitive, but they can't fully get it, and I think they also don't want to cause further pain. So many times recently, I've thought about how old my nephew would be if he had lived (just 2 months--if he'd been born term-- older than my twins), but I don't know if saying something would cause more pain to my sister-in-law, or if it's better to say nothing. I don't know. So, I say nothing. I feel like I should say something, but I don't know how. He died more than 7 years ago because he was born too soon. We never had the chance to get to know him, but he is still not forgotten.
Tommy, and his legacy, will never be forgotten either. Whether you campaign or not, that little boy touched many lives with his smile and determination. Hugs to you and prayers for your family!
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