7 For 7: How CHD Changed My Life

This post is a little personal, but something I was inclined to write after the last few weeks of complete submersion in the CHD community. I found that the very same things that have changed so drastically in my outlooks and life are shared by many families with CHD. Here are the top seven things that came to mind as I thought of how our lives have changed forever.

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 my daughter 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. When my husband switched jobs, we found out our daughter was "uninsurable" from an endless parade of providers.
3. Learning to Let it Be. With my first child, I spent hours upon hours in instructive play, and when my second child came out with a "defect," was determined to do the same to keep her at or ahead of the milestone charts. Instead, 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 hate talking money, and 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, hotel or hostel stays and travel costs can add up. Not to mention the 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 talk about but needs to be said. We are lucky - we've taken a hit, but we're surviving. Other families have lost everything and are fighting not only for their child's life, but for their family's ability to survive financially. Every CHD family I have met has been affected financially - whether upper or lower class, or somewhere in between! It's not something you can plan for or prevent.
   
5. Learning How Tough Marriage Can Be. My husband and I have definitely had our ups and downs since we got married 12 years ago, but nothing can put a strain on a relationship like having a child in critical condition. You feel closer, yet more alienated from your spouse than ever. Your full attention goes to your child's survival (and, in our case, in worrying about the impact on her sibling), and you lose a lot of yourself 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. My daughter 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 I often smile, knowing that that person has no idea that this screaming banshee in my grocery cart is an 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!!