Join me, please.

I was watching T.V. the other day (shocker…) and a commercial for the Susan G. Komen – 3 day event – was televised.

I thought about my cousin in Seattle who walks it every year for her mother…my aunt…who died when she was in her early 40s.  She left behind her 3 kids and husband.  She was the the 2nd child my grandfather had to bury (he’s had to bury 4 out of his 6 children so far…).

Their saying was, “Everyone deserves a lifetime.”

It bothered me.

A lot.

Breast cancer awareness is absolutely important.  I’m a woman…I have a daughter.  I have a husband..I have a son.  My family has buried women stricken by the awful cancer.

Breast cancer affects us all.

Then…I saw a commercial for St. Jude.  I watched Sean White, the Olympic gold medalist, endorse St. Jude and ask for help for those children battling cancer.  He has had multiple open heart surgeries and is a congenital heart disease survivor.  Did you know that little tidbit?

And that commercial bothered me.

Please.  Please understand.  I do not think anyone – especially children – should have to battle horrific things like cancer.  I pray daily for a few little ones who are in remission.  Gabby – just kicked leukemia’s booty.  Sweet Jackson is in the throes of his battle with leukemia and his journey, albeit different, hurts and dings with every new update I read about him being in the hospital.  I applaud the efforts of both organizations.  I want awareness of breast cancer and childhood cancer.

But, I can’t help but think…

What about me?  What about us?

Me – the person who is now affected forever with the diagnosis of congenital heart disease.

Us – the millions of people all over the world who have congenital heart disease/defects – the Heartland.

Congenital heart disease – CHD for short – affects 1 in every 100 babies.

It kills more children every year than all of childhood cancers combined.

Read that again…”back that @$$ up”…”put that thang down flip and reverse it…” whatever you gotta do…read that line again..

yes…the line where it kills more children every year han ALL childhood cancers combined.

Why don’t more people know about it?

Is it because CHD is the disease that doesn’t look like a disease?

Our kids are rosy cheeked, all smiles, some with chub…the picture of health.

Madison – 21 months, Hypoplastic Left heart Syndrome, dextrocardia, pulmonary atresia

Gabby – 5 y.o., Heterotaxy, Hypoplastic Left Heart Syndrome

Ava – 18 months, Tetralogy of Fallot, Pulmonary Atresia

Rowan – Hypoplastic Left Heart Syndrome, 12/12/11 – 6/11/12

Until you see their chest…marred with scars of the incision that spans from neck to navel, chest tube sites, some of us…feeding tube sites.

Maybe it’s the misconception that a surgery will “fix” their broken heart.

I’ll take some blame for that.  I flippantly call Evan’s heart broken.  It’s a cutesy way to describe it.

But, unlike most things that break…there is no repair for a CHD.

It’s not our (the Heartland) way of trying to gain sympathy – which one person alluded to.  We don’t want your sympathy.  We don’t need it.

There isn’t a cure.

There isn’t a fix.

This is a disease – even after multiple heart surgeries and interventions – that will NOT go away.

We don’t get a remission.

We don’t get a “the _______ (insert a disease here) is cured!”

Our children live with this. Forever.

And forever is relative.

We hope for a lifetime.  Yet we pray for just another day…

Because we know – the Heartland knows – eternity is truly just a heartbeat away.

Maybe no one knows about CHD because there isn’t a cure…so no fancy drugs can be made to fix them.  No big money can be pushed into a pharmaceutical company and the media talk about the new miracle drug that is curing the heart defects.

Money talks…and there isn’t much money in CHD.

BUT, there is a lot of us.

Us – being the mamas and the papas – the granddaddy’s and the grandmama’s – who desperately need our voices to be heard.

Not just for our children…but for those yet to be diagnosed.

We need awareness because CHD needs to slide off your tongue as easily as the word cancer.  It’s just as bad.  Our battles – different – but just as painful.

We need awareness because with the prevalence being so great – 1 in a 100 – people – there are too many babies going home and dying undiagnosed.

We need awareness because maybe someone will donate that dollar or that million into funding research for a new technological advancement that will give our children the chance of living into their 60s…

If you’re reading this, you may have just stumbled upon my blog right now or your are a faithful reader and prayer warrior for my boy.

That means…you know about CHD…please use your knowledge that I have hopefully given you in my words and pleas to help spread the truth about the disease that is killing the most innocent.

February 7 – 14th is Congenital Heart Disease Awareness Week.  It’s when you’ll hear stories from me, from my fellow heart mamas and papas…trying our darndest to raise awareness and spread the word on CHD.

But, tomorrow, on February 1st – the 1st day of the month of love – is “National Wear Red Day”.  National Wear Red Day is the day we – the Heartland – unite and ask those around us to unite with us in showing solidarity and support for those we love.  We ask that you wear red..the color of blood, the color of love….our color of hope….for someone you know that has been affected, is battling, or has lost their battle with Congenital Heart Disease.

Just like I’ll wear pink for those battling breast cancer, blue for my dear friends who are living with autism, light blue for those littles and their families fighting childhood cancer…I ask you to wear red.

It’s the day of the year I ask all of you to show others you know someone – my boy – OUR Evan – who has a heart that is more special than most.

It’s the week – Feb. 7 – 14th – that I hope to show you a look into our world as I and my heart families – share our stories of how CHD has affected our lives.

It’s the month – February – where I get to educate, empower, help change the face of our community with the important statistics of CHD.

It’s time.  The time is now.

To know.  To be empowered with knowledge that can save a child’s life.

To be the voice for me, for Evan, for all of “us” that need you to speak for us, with us…in HOPE.

 

Comments

  1. Kathryn @Expectant Hearts says:

    Much like the sweet picture of Rowan, who died in the same hospital my son did – as Seth lay DYING one of the nurses even said “I think he’s the healthiest looking heart baby I’ve ever seen.. You would never guess his body was so broken inside”.

    So broken inside. Indeed.
    Thank you for this post.

  2. Beautifully said!

  3. This is the plea of my heart. Thank you for sharing and including my little warrior!

  4. Melissa Leaman says:

    Thank you for putting into words what I have been wanting to say since my daughter was born. I have watched families loss children or go thru long hospital stays. And let me tell you, the people i have met in the heart community are AMAZING. I wish that we could get the support and backing that some of these other organizations get. How can we do it????

  5. Babs Wright says:

    I’m one of those grandparents (Madison) & wish we could all shout it from the mountaintops! Thank you…

  6. I to know so much about this odd disease to look at me most would assume healthy 36 yr old but no take a deeper look I have the tell tail scar tyat runs from my chest to navil. I have had four open heart surgeries from the early age of four days old three yrs ten yrs and 22 yrs we find that you never grow out of your pediatric issues they repair replace and manipulate our heart to work for a period of time I have had repairs to my pulmonary valve. I. Was born with pulmary atresia vsd my heart was deflated like a ballon. And I still have future surgeries to be performed due to my heart has began to weaken on the left sde. But. The doc plan to wait till my pulmonary valve needs repair or the left side can no longer wait for its repair. I. Am not saying life has not had its ups and downs but I have over came many no’s that the docs have sat before me. And have proved many people just what someone with heart issues can over come I am a single mom with two very healthy children. Ages 12 and 10. And I have learned all things threw God are possible and never to give up hope hearing that there are people who have over came the obstical called chd. Can give just one person hope for a brigjt future for your child makes me happy