7 For 7: How CHD Changed My Life

Before I go into the 7 for 7 for today, please keep up prayers, positive energy, or whatever you can muster for baby Claire, who was sent to the hospital earlier this week with what they thought was RSV. It turns out that it's not RSV, it's much more serious, and she's having a very tough time right now. Please think of their family tonight!!

I can't believe I just posted this on the "public" blog, but I did. After talking to lots of moms all over the country in the last year, I've found out that I'm not alone. In fact, I found out that I'm not unique at all in these 7 things - they are the norm when it comes to coping with a life-threatening illness with your child.

1. Realizing What a Gift Life Is. The miracle of life is more poignant than ever before. As an emotionally-reserved kind of person, I'm amazed at the overwhelming emotions I have when it comes to babies. I cry in part out of joy, in part out of longing for those moments that were lost with my daughter, part in sadness over the babies I know that were lost, and mostly over the miracle that I see. Life, simply, has so much more meaning to me.
   
2. My "Uninsurable" One. I've unfortunately learned the hard way what the real status of health care in America is, and it infuriates, sickens and saddens me simultaneously. When Sadie was first born and crisis hit, we were left with several six-digit "balance" billings that took over 213 hours to get down to manageable sums. Sadie has now been deemed "uninsurable" by every health insurance provider in Virginia. We're hoping she can get medicaid since everyone has denied her, despite the fact that we make too much to qualify according to state laws (ironically, we'd be much better off insurance-wise if we were on welfare at the moment).
   
3. Learning to Let it Be. With Katie, I spent hours upon hours in instructive play, devouring educational theory and incorporating it into every day life. When Sadie came along and had a "defect," I was even more determined to do the same to keep her at or ahead of the milestone charts. Instead, Sadie has taught me to step back and enjoy her milestones as she reaches them at her own pace. Her unique personality and the obstacles she's overcome have made me stop and relax and enjoy those moments of play for the sake of play, snuggling without talking, and letting the house go to hell in a handbasket while we chase each other in circles.
4. Financial Challenges. I have avoided this post like the plague, but after talking to families of all "status" levels with CHD kids, I feel like I can now share this. Frankly, have felt ashamed at the toll the entire experience has taken upon our family's finances. Like I should have somehow been prepared, or been able to avoid the impact it's had. The co-insurance costs, counter billing, medication, doctor and specialist co-pays, loss of income from extra time off of work, extra child care... the list goes on and on. It's incredibly hard to put myself out there and admit that it's taken a huge toll on our finances. That being said we are lucky - we've taken a hit, but we're surviving. I've met other families have lost everything they own in their fight for their child's life. It's enough to make me run to Canada and wave the socialist flag.
   
5. Learning How Tough Marriage Can Be. I can't even begin to describe to you what it's been like for Jason and I this past year. Some of you know about it, some of you don't, but let's suffice it to say we've definitely had our ups and downs in our 12 years of marriage. But nothing can put a strain on a relationship like having a child in critical condition. You feel closer, yet more alienated from eachother. Your full attention goes to your child's survival (and, in our case, in worrying about the impact on Katie as well), and you lose a lot of yourself and almost all of your relationship in it. Having a partner beside you going through the same thing, but with differing ways of handling things (because none of us are truly alike in how we deal with stress and grief!) is both wonderful and incredibly hard.
   
6. Smiling at Tantrums. I used to roll my eyes at parents in stores that had tantruming children, thinking how my child would never behave that way thanks to my parenting prowess. Someone upstairs wanted to take me off my high-horse, and did so with my second child, who has CHD. As I've mentioned once or twice, Sadie has some insanely intense tantrums, which worry me (developmentally) but also reassure me. I'm thankful her heart is strong enough to support them. I'm thankful I get to hear her voice. Most of all, I am thankful for her life. Now I'm the one being glared at, and though I'm embarrassed and ready to run from the store, I can always find a smile at the know-it-all, because he or she has no idea that this screaming banshee in my grocery cart is the ultimate survivor.
7. A New Perspective. My friend Christy, mom to Sydney (see the 7 faces entry 2 days earlier), wrote, "Having a child with CHD had totally changed my prespective in life. I do not sweat the small stuff like I used to. I have learned to cherish the moments with my children. For the smiles...drools....tears....temper tantrums....arguments....laughs....for their strength....courage.... and most of all, for how much they teach me about life and unconditional love." Well said, Christy, and ditto to that!!