Wednesday, February 13, 2013

How CHDs affected me

Someone asked me not too long ago how I think being in the CHD world has affected me the most.  I am still quite baffled by the question.  It's part of the reason why I haven't blogged at all this week, CHD Awareness Week.  I have been somewhat lost in thought about this topic, as there are many ways my life has changed.  I don't feel like I can pick just one, but here are the ones that make the top of the list.
It's an oft-repeated mantra of people who have faced down demons.  "I learned to appreciate the little things."  But it's so, so true.  It doesn't matter that I don't live in a gigantic house with a fleet of shiny new luxury cars to ride around in.  Nor is it a big deal that we are a one-income household.  Of course, we'd all like to have a little extra money every month.  To be able to afford to go on vacation would be fabulous.  In the scheme of things, though, it's no big deal.  We make do.  We dine like kings without leaving our house, and marvel at all the little things we do every minute of every day.  Things that normally wouldn't warrant a second thought. You know how new parents will go watch their newborn sleep, totally in awe of their child?  I still do that and Madi is darn near seven years old.  It was my husband's birthday yesterday and I asked Madi if she wanted to sign his card.  She did, and scrawled a near-perfect "M" inside the card.  I couldn't have been more thrilled if she'd written the latest New York Times bestseller.  I have been brought to tears at the sight of my child finishing a plate of spaghetti.  Seriously.  And then I promptly laughed at myself, which brings me to the next item...
Sometimes, life deals you a crappy hand.  Sometimes, it happens more than once.  When you have some of the world's greatest doctors totally stunned at the fact that both of your children have now needed heart transplants, what is there left to do?  You laugh.  When your child hasn't pooped for two weeks due to all the narcotics that they've been on, you laugh at the poor nurse that has to give her an enema.  You laugh even harder at the lucky one who gets to bathe her after the apocolyptic "code brown" that ensues.  When your daughter learns to get out of restraints designed to keep her from messing with her IV or feeding tube, you just sit back and giggle.  With nurses around to take care of their every need, you get a glimpse into your child's personality that you may not have noticed before.  Instead of worrying about changing diapers or cleaning up vomit for the third time in a day, you get to do the playing, singing and laughing with your little one.  As time goes on and your kiddo looks better every day, it feels so wonderful to crack a smile.  To truly enjoy all the personality traits you never knew your child had.  And to share your smiles with someone you love, which is the next topic.
More often than not, at least in my case, when the going got really tough with my children, people I thought I would be able to count on for anything turned tail and ran.  For whatever reason, they just couldn't handle this new way that I had to live my life.  I am ok with it now, most of the time, but as it happens it cuts like a knife.  So what's a modern mom to do?  Why, turn to Facebook of course!  There is an online community of heart parents that are out there just waiting to lend their support and knowledge to a newbie.  When I was at my lowest, they were the ones I turned to because they knew where I was at mentally and emotionally.  I didn't have to go into lengthy descriptions of what this term or that medication meant-they already knew.  They prayed, wrote sweet letters and cards, and sent care packages like no one's business.  They came for visits armed with chocolate and hugs.  They stood by my child and held her hand as the heart monitors and ventilators beeped, ignoring the whirr of the ECMO machine like it wasn't even there.  They cried with me when things got scary but never ever allowed me to lose hope.  They let me know that they were my family and always would be.  There is nothing so valuable as someone who totally understands where you're coming from.  I guess, besides the fact that I am most thankful for my two miracles, this is the part of the CHD world that's affected me the very most.  It's the club I never wanted to be a part of, this heart parent thing, but in them I have found home.
Aside from the absolutely incredible gift that my children were given by their organ donors, knowing where I belong, and that I will always be loved unconditionally, is the very best gift of all.

Monday, February 4, 2013

Why I'm angry at heart month

Be warned: I'm mad.
It's February, which means that it's heart awareness month.  February 7th-14th is CHD Awareness Week.  We get busy in my household in February, hoping that we can spread awareness, pay forward the kindnesses given to our family, and maybe educate some people on what it's like to have a congenital heart defect sneak up on you and slap you in the face.
I post pictures of my children when they were in the hospital.  Post-surgical pics full of tubes and wires.  Photos of my children with ventilator tubes in their throats.  Feeding tubes down their nose.  Catheters.  You know why I do that?  So that people stop and take notice, and perhaps take a moment to educate themselves on the number one birth defect.  Also so that my girls can see that they are strong, and they have beaten the odds, and overcome some serious stuff.
On Facebook (and in "real life"), I have lost friends because they said they couldn't handle the pictures.  Or my posting of CHD facts.  Or when I repost fundraisers for people who have lost their children, so that they can get help paying for their child's funeral and/or headstone.  They tell me it's "sick", "wrong", "annoying", "too sad", "disturbing."  Do you think I LIKE the fact that my children have gone through this?  That I ENJOY thinking about my daughters being on life support, going through strokes and CPR?  Or that I take some kind of sick pleasure begging people to throw a few dollars at a fundraiser for a little boy who died in the same room that both of my kids "lived" in post transplant?  Believe me, it's no freakin cake walk.  I hate that my daughters have had to face this.  That any kid does.  Or any parent, for that matter.  The truth of the matter, though, is that without constant posting, people brush it aside.  Even with the CHD postings that my heart family and I flood Facebook with, I strongly suspect that most people have forgotten about it in the amount of time it takes them to scroll their mouse past a posting.
Would you ignore my posts if my children had cancer?
If they lost their hair?
If I was trying to raise money for pediatric cancer research, or for a child who lost their battle to cancer?
No.  You wouldn't.
You'd donate to fundraisers.  You'd come to our blood drives.  You'd look at pictures that showed a child's battle with cancer and remark about how strong they were, what a warrior they were.  You'd do whatever it took to help a local family pay for their child's headstone, without a single question about why it was so expensive or why they can't pay for it themselves.  You'd help deliver blankets, books, and toys to kids in the cancer ward at the hospital.  You wouldn't tell me to stop being so vocal about my child's illness, and you certainly wouldn't criticize my parenting for never, ever wanting to stop until there was a cure.
Is my child not as important?
Do heart kids not deserve a chance, too?
Isn't it worthwhile to allocate funds toward research to combat the number one killer of our children?
I give to pediatric cancer research.  I participate in fundraisers for kids with cancer.  I never think twice about it.  Because it's a child that's in pain, a family that's floundering in their difficulties.  I take no issue with the attention that cancer patients receive.  I just want the same for my own children.
I want to be able to post things about congenital heart defects and organ donation without people rolling their eyes, saying "There she goes again."  I want people to want to know more about CHDs and how they can help eradicate this monster.  I want my friends and family to support me and mine by supporting the efforts I try to make toward CHD awareness.  For them to never forget that CHDs do not discriminate.  That they take more lives than all childhood cancers combined.  That they are severely underfunded research-wise, and the healthcare costs for them reach into the billions every year.  Yes, billions.  With a b.  I want people to stop what they are doing when they see a picture of a heart baby, full of tubes, and think about the tremendous courage of the child and their family.  To reach out to them.  To pray for them.  To truly care about this fight that so many of us are in.
This is our world.  We live it every day.  Heart parents, like any other parents of a child with a serious medical condition, just want to be heard.  Really heard, and not just for one week out of the year.