This is a poem that I have on my blog (http://browniebitez.blogspot.com) and I just love it. It’s written by Stephanie Husted, an amazing heart mom and poet. I hope you all love it as much as I do!

A Mother’s Perspective

You passed me in the shopping mall…
(You read my faded tee)
You tapped me on the shoulder…
Then asked…”What’s a CHD?”

I could quote terminology…
There’s stats that I could give…
But I would rather share with you…
A mother’s perspective.

What is it like to have a child with a CHD?

It’s Lasix,aspirin,Captopril…
It’s wondering…Lord what’s your will?…
It’s monitors and oxygen tanks…
It’s a constant reminder to always give thanks…

It’s feeding tubes, calories, needed weight gain…
It’s the drama of eating…and yes it’s insane!
It’s the first time I held him…(I’d waited so long)
It’s knowing that I need to help him grow strong…

It’s making a hospital home for awhile…
It’s seeing my reward in every smile.
It’s checking his sats as the feeding pump’s beeping…
It’s knowing that there is just no time for sleeping…

It’s caths, x-rays and boo boos to kiss…
It’s normalcy I sometimes miss…
It’s asking do his nails look blue?
It’s cringing inside at what he’s been through.

It’s dozens of calls to his pediatrician…
(She knows me by name…I’m a mom on a mission)
It’s winters homebound…and hand sanitizer…
It’s knowing this journey has made me much wiser.

It’s watching him sleeping…
his breathing is steady…
It’s surgery day and I’ll never be ready.
It’s handing him over…( I’m still not prepared…)

It’s knowing that his heart must be repaired…
It’s waiting for news on that long stressful day…
It’s …praying…it’s hoping…that he’ll be okay.
It’s the wonderful friends with whom I’ve connected…

It’s the bond that we share…it was so unexpected…
It’s that long faded scar down my child’s small chest…
It’s touching it gently and knowing we’re blessed…
It’s watching him chasing a small butterfly…

It’s the moment I realized I’ve stopped asking why?
It’s the snowflakes that fall on a cold winter’s day…
(They remind me of those who aren’t with us today)
It’s a brave little boy who loved Thomas the train…

Or a special heart bear…or a frog in the rain….
It’s the need to remember we’re all in this plight….
It’s their lives that remind us we still need to fight!
It’s in pushing ahead amidst every sorrow…
It is finding the strength to have hope for tomorrow

For most of my son’s 20 months of life outside my womb, people have commented on how healthy he looks. How big he is. What a cute little chubster my little man is. Stefenie posted previously about how “normal” our kiddos look, how we get this all the time, and nothing could be more true. Even when we were given the news that our son would most certainly need open heart surgery when he was a mere 7 months old, all the comments we got sounded something like:

“I can’t believe it”

“But he looks so healthy!”

“He’s so chubby, I can’t believe anything is wrong with him”

I am not sure what people were trying to convey when they said these words to me, but in my mental state at the time I heard only dismissals of how serious his situation was.

This wasn’t new, it’s how it had been since the beginning. I can’t blame anyone really, it’s because no one knows a thing about CHD unless they are directly affected by it in some way. But, as a parent of a child who is going through something very serious, casual dismissals (however unintended) strike to the very core of your being.

Before my son came into my life, and before we first heard the words “Pulmonary Stenosis,” I lived blissfully unaware of what our country’s #1 birth defect was. I prayed for children with cancer, I prayed for families with stillbirths, I prayed for children and families dealing with Autism. I never once gave any thought to my child’s own heart once we were given the good news that it was beating at our 6w4d ultrasound. And when, at each visit, his heartbeat was strong, I just took it for granted that his heart was fine. Even at birth, when he was in NICU, there were no indications that anything was the matter. So, his heart was not something I worried about.

He was 6 wks old when his heart because the first thing I thought about every morning and the last thought on my mind each night. When every cry sent me running to his side, picking him up, because I was not allowed to let him cry for long. When every car ride alone became a nightmare for me, sending me into a panic whenever he would lose his paci and start wailing. In time, I learned how to best soothe him, and myself, and I became somewhat less fearful again. But, it was never totally gone. His first winter was spent nearly entirely inside our home for fear of him getting sick before his cath or his surgery. He never played in snow last year. I worried that he was missing his gross motor skill milestones, something that was hard for him both because of his size and because of his lack of energy. I begged God to heal him without surgery, to not take him from me when he was heading into surgery, to make me strong enough to care for him after surgery. I relied heavily on my faith and on my family, especially my husband. But, when my husband needed me, I had to be strong for him. We had to be there for one another, so that we could be there for our child. Without him, our families, friends and our faith, I don’t know if we could’ve sustained the the hospital stay intact. But we did. And we were blessed enough to bring home our child a scant 6 days after his surgery took place. We are very blessed indeed.

But, this is not the end of our journey. And this is where it gets interesting again…post surgery, people think “Oh, OK, he’s ‘fixed.’” And yes, his heart is mended, but he will always need care, he still has a CHD because his isn’t one that totally “goes away.” We deal with friends and family who, due to whatever reasons they have, can’t or won’t allow us to talk about our fears, our worries, our concerns for the future. We are currently undergoing genetic testing to see if our son has something called Noonan Syndrome, and if he does, he carries a 50% chance that he’ll pass it along to his own children. Kind of hard to just “move on” when that unknown is still out there. Kind of hard to “move on” when our son sees a cardiologist every year, when he has foreign material in his pulmonary artery keeping it open and we have to pray that his own tissue compensates for this graft as he grows, since the graft won’t grow. We don’t let it dominate our lives anymore, our son is an active little boy, who climbs, jumps, swings, runs and yes, plays in the snow! But, he will always have a special heart, and a scar to remind him of how strong he is and how far he’s come.

And you know what?

Outside of the pain he’s had to endure, I wouldn’t change a thing. While he is not defined by his CHD, as he’s so much more, it’s helped make him the little man that he is.

And I love that little man with all of my heart.

On May 30, 2008 my life was forever changed. At 6:02pm, Andrew William Brown (Drew) was born, scoring 9s on his Apgars. We were sent home from the hospital not quite 48 hrs later with a seemingly healthy newborn. After weeks of struggling to get his feedings on track, the pain of letting go of breastfeeding, and trouble gaining weight because he was falling asleep while eating, Drew was diagnosed at 6 weeks of age with 2 CHDs: Pulmonary Stenosis and Atrial Septal Defect.

I remember leaving the Cardiologist’s office in total disbelief, stunned and extremely upset. I also remember feeling very alone and not having a firm grasp on what all of this meant. As the months went on, and his CHDs worsened, it became evident that Open Heart Surgery would be required to mend his special heart. At this point, I had had enough of the loneliness and sought out support groups here in Metro Detroit.

We were fortunate to have one group already established, Hearts of Hope of SE Michigan, and I quickly became a member. In addition, I began speaking with It’s My Heart on a national level and soon, It’s My Heart – Metro Detroit was born. In the meantime, Drew had his repair done at Children’s Hospital of Michigan on March 27, 2009 and we were blessed with a full and speedy recovery. He is and always will be the main inspiration and driving force behind my involvement in this fight. Everything I do, I do it for him … and for his fellow CHD Warriors and all our CHD Angels.

Andrea Olson, a fellow contributor to Blog 4 CHD, and myself began the Chapter with another “Heart Mom.” We have quickly grown and are working hard at bringing awareness of CHD to the Metro Detroit area and supporting families affected by it. We work with both local Childrens Hospitals – CS Mott Children’s Hospital at UofM and Children’s Hospital of Michigan. We also work with Beaumont Children’s Hospital (Cardiology Department) as well. If you are in the Metro Detroit area and looking to become involved, please contact us at metrodetroit@itsmyheart.org OR call us at 248-229-7369. We would love to have you!!!

Upcoming Events:
12/29/09 @ 7pm ~ Support Group and Volunteer Meeting at Plymouth District Library (Plymouth, MI)

1/25/10 @ 7pm ~ Support Group and Volunteer Meeting at Royal Oak’s Senior Center (Royal Oak, MI)

2/6/10 @ 5pm ~ 1st Annual Wine Tasting and Silent Auction (RAISE a glass to CHD AWARENESS) at Grapevine Wine Bar in Novi, MI

2/13/10 @ 6:30pm ~ The Heart of a Child Fundraiser with Children’s Hospital of Michigan (Rock Financial Showplace/ Novi, MI)