Mother’s Day 2010

From StorytellERdoc:

It happened again last week. Among the hustle and bustle of a crazy shift. A pre-hospital radio call from an ambulance team that nobody ever wants to receive.

“We’re bringing you a child in cardiac arrest.”

Heart Moms (and mothers of all Sick Kids) go to the wall for their children. Not occasionally, not when needed, but constantly. Traditionally, we’re supposed to grow up, move out, have our own family, and then take care of our parents as they age.

But for some of us, that won’t happen. So our mom may spend her entire lifetime in “Mom Mode”. When the child has a disability, moms are instinctively more protective and worry more. Their children’s lives may not be what they imagined or hoped for, but good moms adapt and hang in there.

Then, time stood still. From two hallways away, I heard the haunting sound. A sound that I knew was coming. A sound that is played over and over in my mind for days after an event like this. A sound of profound anguish. A sound of utter disbelief. A sound of infinite pain.

A mother’s cry.

All our mothers live in fear of their worst nightmare: The thought that they might have to bury their child. With sick kids, that fear is with her every day. 99% of the time when morning comes and the child is late in getting up it’s just that the young’n didn’t set his/her alarm… again. But when a Sick Kid’s mom opens the bedroom door, her breath catches in her throat. What if…?

When the doctor comes out of surgery, what if…?

No mother should ever have to bury their child. It’s unacceptable, it’s unnatural, and it just ain’t right. But some mothers do, and others live in constant fear of that sad event. And yet you hang in there, and you stand by your child – forever.

Thank you.


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8 Responses to “Mother’s Day 2010”

  1. kelly robinson Says:

    Thank you Steve. Still waiting for you to interview YOUR heart mama. Would be so great to hear her stories of fighting for you during a time when the fight was so much harder. Give us the FunkyHeartMAMA!!!

    • Steve Says:

      Noooo, Mama is a private person. I seriously doubt you’ll be seeing her on camera any time soon! (perhaps one day….)

  2. mendedlittlehearts Says:

    Steve –
    I can’t finish reading this (for the 3rd time) with tears in my eyes. No matter how “well” our child is doing, no matter how “busy” we are to avoid the truth, no matter how old our child gets… we are always heart mom’s. Bless you and all you are doing for CHD.

    • Steve Says:

      THANK YOU!

      For those of you who don’t know, Amy is a TRUE Heart Mom. I’ve emailed back and forth with her for several months now and was finally able to meet her at Lobby Day 2010. She’s tireless, steadfast, and willing to do all the “little things” – the grunt work – needed to promote awareness of Heart Defects.

  3. Nancy Brown Says:

    I’m a pretty recent follower of yours, and I just want to thank you for all you do. Your understanding of a Heart Mom’s (or Dad’s) perspective is right on. No matter what we do to put up a brave front, no matter how much we try to hide or forget our worry–it is there. Always.

    I’m a mom of two brave CHD kids–an 11 year old son (primum ASD, cleft mitral valve, mitral regurgitation) and a 13 year old son (sinus venosus ASD, PAPVD, SVC stenosis). I lost my first-born, along with a part of my heart, on April 12, 1996–my daughter who was stillborn at 36 weeks. We often wonder now if she died due to a CHD. Having already buried one child, I can tell you that subsequently finding out we had a child with a CHD, and then several years later finding out we had two CHD kids, brought on a great deal of anxiety. We’d already lost and lived with an indescribable feeling of vulnerability. We know what it feels like to say goodbye to a child, and the fear of losing another to a CHD is a heavy burden. Much to our relief, our 4th child, our 9 year old daughter, is heart healthy.

    Sometimes all we need to hear is that someone understands. You get the word out for us, you encourage us, and you work tirelessly on behalf of us and our CHD kids. Thank you!

  4. Tina Says:

    This post is so very true. I didn’t even realize how paranoid I was until about 5 years ago my daughter was about 8 and called me on it. She went to check on her older brother the 10 and said yes he’s asleep and yes he’s breathing. I questioned her and she said mom you always ask me if he’s breathing when I tell you he is still asleep so I beat ya and answered you first. I honestly never realized it and when I did it was an eye opener for me. Subconsciously I do worry about him even if I don’t always admit it openly all the time. I felt pretty bad that my young daughter called me on it. She still answers me the same way. I think now that she’s older there is a part of her that understands why I worry. When we went out of town to Boston a few years ago she was there for over a week with us and also witnessed him have a terrible bleed out at his cath site. She also has new appreciation of his out of town hospital trips. It is not always as cool as it sounds like it would be. Yes, he gets to travel but sometimes goes through hell during that travel.

  5. Jan Says:

    I thank God For the heart Mom (and Dad) I was given at birth and then, when my Mom died, I found a whole board full of heart mom’s who were ready to go ahead and watch out me and continue to support and love me. To all my *Heart* Mom… and toe very heart mom out there.. Thank you …

  6. Amy Says:

    Cherish every single second with that special child of yours. I am one of the moms who had to bury their child and it is not fair. Take a lot of photos with your child especially this Mother’s Day!!

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