Thursday, May 22, 2008

Growing up with CHD, Part 3

Growing up with CHD: A Mother-Daughter chat

By Sarah Clark and Connie Walker

Hey everyone! I apologize for the delay on this post. this week has been a bit crazy in the Clark and Walker households, with me and my husband closing on our first house next friday and my folks packing up for a family visit in Virginia. Thanks again for your patience! After the draining experience that writing (and probably reading!) the last week's column turned out to be, we're going to dial things back a notch. Mom and I were talking on the phone the night before my second column posted, and liked my idea of co-writing the final article in this series. In fact, we're going to change things up a bit, and this article will be written as a interview with me asking and Mom answering questions about how my CHD impacted our family, what we're really proud of, and what, if we had it to again, we might do differently or wish someone had told us.

Also, what's next for my involvement with the CHD blog? Well, As you see, Kim has bestowed on me the honor of co-authoring this blog, and while she's certainly more of an expert on raising a kid with CHD, I'm looking forward to adding my two cents from the other side of the fence, so to speak. After my life settles back down from our move and a few work commitments I'd kind of like to put my librarian hat on for an article or two and share some tips on doing medical research. When I was young the issue for average folks was finding any information at all. Now thanks to the Internet, we're all drowning in data on any medical subject you can think of, of quality varying wildly from expert to quackery. I'll help you figure out where to search, what terms to use, how to effectively use your local public and university libraries, and how to evaluate what you find and discuss it intelligently and assertively with your kid's medical team.

Last, I want to share my contact info and mention a resource I've found useful. As I mentioned, I didn't really have any CHD role models as I grew up, came to terms with some very strange and heavy stuff, and became the productive and upstanding grownup (?) that I am today. Again thanks to the Internet, that no longer needs to be the case no matter where you live. While I spend far more time on Lifehacker, LOLcats and Writing-oriented blogs and forums than in the heart defect corner of the net, I'm a proud and slightly goofy member of ACHA-this association lobbies for the needs and interests of adults with congenital heart defects, sponsors research and education in ACHD issues, hosts a bi-annual convention for adults with CHDs, family, friends, and physicians, and provides a message board where teens and adults with weird plumbing can share their victories, support each other through tough times, or (mostly) be silly! You can drop me a private message there (I'm on as OKLibrarian), or simply zap me an email at If you're looking for the parental perspective, you can reach my mom and dad at and respectively. (Thanks again for volunteering to be spammed, Mom & Dad!)

Now for part 3:

Sarah: I know I've said this before, but why not let the whole internet know? I got very lucky to have you and Dad as parents. As I've mentioned, you helped me and Daniel survive some very...interesting times during our childhood, and we've somehow managed to both become mature, upstanding adults with spouses, mortgages and careers. What do you think were the most important things you and/or dad did that helped us get to adulthood with good mental and physical health?

Connie: We loved you. That simple--and that complicated. I'd like to believe it would have been the same regardless of health concerns or birth order, but who can say for sure. Life happens as it happens.

Whatever was happening in our lives, it was important to me that home meant safety--a retreat and refuge. We valued you two for who you were--not who we wanted you to be. We paid close attention to your interests and talents, and did our best to nurture them in every way we could. We also did our best to turn every perceived "failure" into a learning experience. By the time you were born, we had learned that resilience was the most important tool for a successful life. We made it our highest responsibility to make sure both of you had that tool!

Sarah: On the flip side--if you had it to do all over again, is there anything you would have done differently, or wished you'd known about in advance about raising a kid with CHD, or just parenting in general? (let's take not bringing me to see ET as read. *smirk*)

Mom: You've been very kind not to mention my worry-wart nature. It's my lifelong "defect" (can you tell I take strong exception to that word and what it implies...). When that worrying nature was applied to my deepest love--my family--I probably added unnecessary burdens to your lives. I wish I could have been braver. But as I've told you before, it could have been much worse! Without sharing my fears with you & Daniel, and forcing you both to prove to me you would be smart and safe, I would probably just have locked you in the house forever. It is a generalized fear...applied in its turn to my beautiful, first born, "blue" baby, crossing the street alone, riding the bike to a friend's house, dating, driving, calls from a deserted train station in Rome at 2 a.m. on Christmas know, silly stuff like that. (And on the topic of ET, if it's still traumatic, I'll be happy to make you another ET costume and let you parade up and down the neighborhood, like we did all those years ago!)

(Note: The author would like to commend her Mom for her very savvy desensitization of her daughter's ET-Phobia, and also remind her that she had specifically requested a phone call on Christmas Eve, and it was the only phone booth available by the time we left midnight mass @ the Vatican! The only people around anyway were a policeman, my backpacking buddies and a very polite transvestite panhandler...)

Sarah: My younger brother Daniel is the coolest guy on the planet, and hasn't gotten nearly enough attention in the first two parts of our story. Among other gifts, he has more musical talent in his little toe than I will ever hope to possess, and plays keyboards part-time with local jazz and funk bands in addition to his career as an Industrial Engineer. However, he and I are very different people-he is a logical, laid-back guy, quiet where I am outgoing, mellow where I am melodramatic. How did you handle raising two children, both very gifted in their own ways but with two very different personalities and needs, and how did you try to make sure that your "normal" kid didn't feel like he was shortchanged?

Mom: See answer to question # 1! Truthfully, he probably did feel shortchanged from time to time. Probably you did too. Sibling rivalry is what it is. But disrespect, in action or word, was not allowed between the two of you (at least not when I knew about it). Do you remember when one of you would say, "that's not love ____ more than you love me!" I always answered "yep, you must be right". That always shut off the pity party, because you both knew that was silly talk. We valued you both, and expected you to value each other. That mutual love, respect, and support of each other is still my strongest desire for the two of you. Different is good!

Sarah: I often tell friends that I had a idyllic 80's sitcom suburban childhood "with a few twists"- Often I don't think they believe me until they've seen enough of us all interacting to realize it isn't some weird passive-aggressive act! How did you and Dad find a balance between acknowledging the medical challenges I (and later Dad) had to deal with growing up with giving me and Daniel as "normal" and stable a childhood as possible? Also, do you think everything we went through made you and dad a stronger couple, and us a stronger family?

Mom: Well, your dad and I are at least as different from each other as you and Daniel are! I think it is extremely important to have both parents involved in a child's life. I know it isn't always possible. In fact, for a good portion of your childhood, dad was too sick to be as actively involved as he had dreamed of being. It took all of his energy just to keep on working, so we would be provided for. That makes us sad when we look back on the childrearing years. But those kinds of regrets don't really serve any purpose except to keep people from making the most of the circumstances they find themselves in. We just did the best we could with each day that was given to us.

To answer your question, reference my overprotective, worrying nature. One day, after listening to my many plans for keeping you safe from any danger, harm, hurt or substandard educational experiences, your dad, in exasperation, said, "Connie, we don't live in Mr. Rogers' Neighborhood!" He had hit the nail on the head. That was exactly where I WANTED to live. And I told him so. But it also made me laugh at myself. I knew you (and Daniel) couldn't live there forever, even if we could afford a house in the Neighborhood of Make-Believe. And so it went, with every "crisis"--potential, undeniable, or conjured up--we both spoke up about our fears, opinions and reasons, communicated (sometimes loudly) and came up with a solution we could both live with. The one thing we always knew was that we both loved both of you, and each other, very much.

Sarah: I'm not a parent yet- some days I barely have it together enough to take care of our cat! :-) Because of that, I'm guessing that I'm missing some stuff you think is important for other parents to keep in mind. Is there anything you'd like to say that I didn't ask you about?

Mom: Becoming active in a support group was probably the one thing we did that saved our marriage, family, and perhaps even your life. Lifeline, the support group at Children's Hospital in Oklahoma City, was the saving grace when you were first born. I dealt with guilt (what had I done wrong), anger (what kind of God would let these things happen to innocent children), fear (if she doesn't live, I can not bear to live either), and overwhelming love (surely everyone knows this is the most beautiful, marvelous child who was ever born). I worried about every sneeze, about helping you gain enough weight for the surgery, about how you were progressing compared to others your age. Some of that was heart, and some of that was first baby. The worries were real. But the focus of Lifeline (named by a family who called their child's scar her lifeline) was hope, support, education and friendship. I never thought of you, or any of those other wonderful children we grew to love, as defective in any way. You all were perfectly, wonderfully made.

Your correction eventually had an excellent result, but there were problems from the post surgery complications that we had to deal with. It is possible we might have defined you in terms of those problems, except for what I call "God's beautiful gift wrapped in a very ugly package". You had a respiratory arrest after the correction at 18 months. It was my blinding light on the Damascus road. All my anger at God about why--why you--why precious little children--why child abuse--all those hard things I saw at Children's Hospital--fell away when I saw them holding the paddles over your tiny, wired body. I knew in that instant that you never really belonged to me. You belonged to God. Regardless of my plans, actions or thoughts, I had no power of life or death. You were in my heart for as long as I had you, and for as long as I lived. My precious privilege, but not my possession. My child, but also God's child. And so, that very minute, I repented of that anger. I gave you back to God, and starting praying for wisdom and courage to raise you and support you in the life YOU were meant to lead. By the time Daniel came along, I knew what to do. I gave him back the day he was born! And I prayed for wisdom and courage to raise him and support him in the life he was meant to lead.

That is my advice to parents, CHD or any other. The only power you have is the power of love. See your children as what they truly are--God's children. Pray for wisdom and courage to raise them and support them in the lives they are meant to lead. It is that simple--and that complicated.


Thanks Mom, and I don't think I can really improve on her ending.

So, Is there a moral to my mini-autobiography? I don't know. You and your kids will have to visit and revisit this issue occasionally through their lives, no matter how "perfect" their outcome is. Aside from less than ideal physical stamina, and a few very minor hearing and motor control glitches created by my brain damage, I'm normal in pretty much every way you could define. And yet, every so often I've had to mull over these issues in my life, come to understand them in a deeper, more mature way, and make peace with them for another few years. It last happened around the time Kevin and I got married, this time it seems to be related to turning 30 and buying our first house, and it'll probably happen when/if we have kids and again when I retire. I suspect it's the same for anybody who's had traumatic experiences in their lives, i.e. 100% of the human population.

I started writing these posts for those of you, like Kim, whose kids have passed the crisis, and who are wondering "what now?" about things like self image and dating and all the soft psychological stuff that you can't really ask your cardiologist about. But I have to be honest and say that I was helped at least as much as anyone here by telling my story. Without realizing I was doing it, I gave myself permission to let go of a lot of my lingering guilt about being born as I was, yanking out that stupid vent tube when I was 18 months old, panicking that night when I was standing by the telephone, and all the other big regrets of my early life. I can't speak for all people with CHD any more than I can speak for all redheaded short chubby Librarians who watch too much Food Network. But in my case, having parents who encouraged us to share our feelings even when they were ugly or scary, who taught us resilience, and who encouraged us to achieve as much as our talents allowed helped me and my brother become strong, successful adults who work every day in our own ways to make the world better. And that, so I'm told, is the goal of every parent. I hope that hearing my story and Mom's will help in some way as you parent your kids. If you'd like to know more, we're no more than an email or comment away.

Thanks for reading,

1 comment:

Kim said...

Wow, what a great testimonial to your family's strength! Thank you for sharing your story!!