February 7-14 is Congenital Heart Defect Awareness Week. To help raise
awareness, spread knowledge and share the effects of this disease, Jayme of The
Paper Deer Photography Blog, Christie of Lemon Squeezy Home and Kierra of The
Irvine Home are each sharing one story of a child with CHD every day to
showcase the trials, triumphs, journey and heartache of this devastating
disease. We invite you to read and share this project to further our voices.
Thank you. #Facesof CHD
Imagine for a moment you’re hand in hand with your spouse on the edge of a
great expanse. Something like the Grand Canyon. And there’s a bridge under
construction that goes from one side to another. There’s caution tape
everywhere and a lot of unknown about which parts are stable and which ones
could crumble if any weight were applied. Then imagine that by no fault or
choice of your own, you are placed on that bridge, 20 weeks pregnant with your
first child, and forced to put one foot in front of another. And then another.
And then another. You don’t know if or when the bridge will crumble. You don’t
know if it will ever be finished, or if it will be finished in time for you to
cross it. You just know that you are forced to walk it. One foot. And another.
And another. White knuckles, squinty eyes, sweaty palms, racing hearts. This is
what it feels like for your child to be diagnosed with a congenital heart
defect.
My husband and I found out that our daughter had a congenital heart defect
at our 20 week anatomy scan. Her diagnosis is called “Tricuspid Atresia”. It
means that one teeny tiny little valve on the right side of her heart didn’t
develop and as a result, the e-n-t-i-r-e right side would never function. Our
sweet girl….the one we prayed for, longed for, and planned for… would have half
of a heart. I went into premature labor at 30 weeks and Addison Fork was born
on September 12, 2013 at Long Beach Memorial, CA at 3 lbs. 3 oz.
She spent 77 days in the Miller Children’s
Hospital NICU and PICU, during which she had her first open heart surgery at
nearly 5 pounds. Let me tell you – handing a frail 5 pound baby to a surgeon to
have her chest cracked open, is just about as impossible of a task as they come.
She finally left the hospital walls and came home to us for the first time on
Thanksgiving Day.
Last spring, Addison had her second open heart
surgery (with numerous complications) that landed us in the hospital for
another month. By the time she was discharged, Addison had spent more of her
life in the hospital than out of one.
We spent the rest of 2014 and 2015 (so
far) hospital free and it has been b-e-a-u-t-i-f-u-l. We’ve learned that she
loves books, allergic to sweet potato, loves being outside or in the bath, is
obsessed with dogs despite her dad’s allergy to them. She always smiles with a
crinkled nose, has the most ticklish collarbone you ever saw, and is a very
happy, social little girl. And, oh man, is she resilient. She is now 16 months
old and 20 pounds. When Addison reaches 30 pounds in another year or so, she
will have what we hope will be her last open heart surgery. This will complete
the 3 surgery process which re-wires her circulation and enables the left,
functioning side of the heart, to do the work of the entire heart. From there,
Addison will have a pretty gosh darn normal life – and praise be to God for
that! She might get winded a little more easily than other children, and she
might not be able to have her own kids one day, and eventually, heart
transplant is a very real possibility for her in a few decades from now. We
will learn her limits as she grows.
So what does CHD awareness mean to me? Go back to the bridge. We don’t know where heart research will go from here. We don’t know if the rate of research will develop faster than her heart will need it to. Are we walking faster than the bridge is being built or will it be built for us in time? We don’t know how many years this version of a heart will last. We don’t know. We just walk. One step. And then another. And then another. Praying for God’s will to supersede our fear and worry and praying even harder that His will is for her to live a long, long, and healthy life. The more awareness we can bring to the outside community, the more money will be designated to heart research. And the more heart research takes place, the more progress is made. And the more progress is made, the more chance our daughter has at a normal life expectancy. In this social media era, we are so easily flooded with this type of story. Children with this illness or that disease. Children that have passed suddenly or more expectedly. Facebook shares and hashtags and GoFundMe projects. These types of children are everywhere we turn it seems. This story is not unlike dozens of others that I’m sure you’ve heard. It is important to me because it’s my daughter, so I want it so desperately to be important to you too. But you have your causes because of your own life experiences. I get that. But please try not to let the excess of these stories make you numb to them. Take just a moment to memorize the uniqueness of these faces not just as faces, but as entire lives. Lives that can bring so much to this world if they’re only given the chance. This is Addison. She is absolutely exceptional. She has already changed this world in a year and a half. I can only imagine what she could do with a lifetime.
- Marisa (Addison’s mom)
Please continue to
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So beautifully put, all of it. I love the bridge analogy and I love that you are pleading with people to listen. It could be anyone. Thank you for sharing Addison! She's beautiful!
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