Sunday, February 8, 2009

Five Minutes: A Heart Mom's Story

It's National CHD Awareness Week! This year we will be posting entries daily, once again - 7 entries for 7 days.

I've had the privilege of meeting some incredible people who work very hard to share their lives with others, opening windows to allow the public to peek into the life of their innermost struggles of living with CHD.

Today's post features the writing of one such person - a heart mom who lays out the truth of the struggles many face with such honesty it stings.
Though I haven’t been down the same road she has, I felt like a piece of my heart and soul were read to me. Perhaps some of you will feel the same...

Five Minutes
by Josie Kurz

Five minutes. Probably more time than it will take you to read this post, significantly less than it has taken me to write it. Certainly enough time to change a life.

A Mother's Instinct

Two years ago, when we first contemplated bringing home a sick baby, Michael and I relied upon his medical background to assure ourselves that everything would be alright. But as we came to learn, Claire's health is complicated and in retrospect, it becomes obvious that no amount of schooling could have prepared us for this journey. With no medical north star, we navigated rough waters, lots of tears, and some long nights. Lonely and scared are only the tip of that iceberg.

What became our beacon of hope was the emergence of a primal, almost unworldly instinct. To say that I know Claire is a bit of an understatement. It isn't just that I nursed her, or that I didn't leave her side for the first few months of her life and burned every minute detail of her health into my is something deeper. Michael has described our attachment by saying that despite their best efforts, our doctors hadn't cut the umbilical cord. Maybe because we are so similar, or maybe because I had to, or perhaps it was a gift from God, but whatever the reason, I know and understand that baby on an almost psychic level. With a little encouragement from some other heart momma's, Michael and I learned to rely on my instinct, particularly when Claire's health began to fail. When I felt something was amiss, something was always wrong.

Year Two

Sometimes I have to laugh at myself and the way that I came to handle the issue of Claire's heart; I tolerated its presence in our family so long as it stayed very quietly in its own corner and allowed us to live very much the way we want to without intrusion. Maybe because in the beginning we coped with diagnosis by clinging to the notion that Claire would get the switch and then be "fixed," it never really settled into my consciousness that congenital heart disease is a chronic illness in every sense of the definition. Once she flew through her open heart surgery, I was convinced that the worst was behind us and I never wanted to look back.

And then Claire got sick.

As I sat by her bed in the PICU, I suddenly realized that we could still lose this baby. For the first time that thought sunk in, and it was as horrendous as receiving the diagnosis all over again...although this time almost worse because by now Claire was more than an idea, a daughter about to arrive, this time she was Claire, a very real and amazing little girl who had stolen the hearts of our entire family. And those eight days were a very difficult battle for us because Michael's instinct was to rely on the opinion of the highly qualified physicians charged with her care and my instinct ran directly counter to their suggestion that, outside of being severely taxed by a difficult and devastating virus, Claire's heart was fine. I can't explain it, but I knew with every fiber of my being that all was not well.

Suddenly, congenital heart disease was no longer something hiding just outside my daily stream of consciousness as something we'd been through, but rather was standing on my chest, gnashing its teeth in my face. Year two of being a heart momma became infinitely worse than year one. There is no fix for this scourge, it's here to stay.

There were approximately six weeks between Claire's discharge from the PICU and her catheterization. During that time we did follow my instincts, and with the help and encouragement from family and friends, went to work creating a plan for managing Claire's health. I remember walking around in a daze, feeling like a live wire. I could feel impending doom, I knew we were facing a bad outcome.

I was convinced that the cath would show heart failure and that we would head immediately for another surgery. I was unreasonably petrified of needing another surgery, of what it meant about Claire's heart, her odds, her long term survival rates. I was so focused on what that cath might show that I never once stopped to worry about the procedure itself.

Laying her down

During our first round at Children's, Claire was still so tiny that they would allow us time to say goodbye and then they would take her away to sedate her and prepare her for the procedure. This time she was old enough that they allowed us to stay with her as they sedated her. What I didn't realize was that this entailed me carrying Claire into the cath lab and laying her on the (adult sized) table as she's still clinging to me; leaning over her with my face as close as possible to hers as they start the medicine and feeling her fight to stay with me. It took a lot of medicine to get her down and it seemed like an eternity that I held her little body as it struggled, but I would have stayed there forever if only to avoid the sensation of her finally letting go. Never have my arms felt so empty. Never had my heart felt so lost.

What were we doing when Claire was in the cath lab? Sitting in the waiting room, reading magazines, laughing at my nephew's antics. I think we wandered to the cafeteria, recalling how the pear trees were in full bloom when we'd been in this position less than a year earlier. I know I was numb, so fixated on preparing myself for the days and weeks ahead. I know I was traumatized by what had just transpired. But I wasn't worried about my baby, not just then.

What was I doing during those five minutes when my baby's heart did not beat? I can't tell you, I don't know. The greatest horror of learning that Claire had arrested for five minutes was the knowledge that I didn't know, during those five minutes, that something had gone desperately and drastically wrong. Me, with my touted mother's instinct and my ineffable connection to Claire...I wasn't aware that it could all be ending. I felt then, and still carry now, this overwhelming anger that I have been robbed of my one final safety net ~ not only could we still lose this baby, but I might not know it as it happens. All at once, the worst wasn't in the past, the worst is the fear of what could come.

In the wake of those five minutes

Who am I in the wake of those five minutes? Surely the mother and wife and daughter and sister that I was before and yet certainly never the same again. Those words are soul-searing, heart shattering, life changing. Nothing can ever be the same again. And yet, we had no time to stop and process, barely even time to grieve. What do you do? What can you do? We went first to the Chapel to turn everything over to God, by whose hands I believe all of our fates to be sewn. And then to our daughter, so tiny in that bed, surrounded by a very skilled team of physicians working to keep her here with us.

It's a blur, a pain-filled hazy blur from which I have spent the past nine months running. The walls penning in those five minutes and the havoc they wrecked on my heart and my soul began to crack in November. Suddenly, in the midst of a headache-induced daze, I found myself confiding these exact thoughts to confidantes who are the very few who could actually understand that pain, my sisters on this agonizing road, mothers to heart daughters, achingly familiar with this burden.

Leaving 2008 in 2008

Only now can I put into perspective the fallout of those five minutes. I freely acknowledge that those moments irrevocably changed me but I sense that the fallout had a wider impact. Because it is precisely what it is, no one wants to discuss it. Within our family, the ripples have been felt quietly; but families carry on, buoyed by love and understanding. Friendships seem a bit more vulnerable. While some have grown stronger, others seemed to wither on the vine and I didn't exactly understand why until I read this fascinating insight on another blog (in the context of how friends and relatives respond to a parent's grief):

"like the mourner, friends and relatives are often angry that this bad thing happened, angry, perhaps, at the universe, the gods, the unfairness of it all. But, in many cases, I think they're also very angry about the loss of their old relationship with the mourner. They don't know or particularly like this new, sad person. They want things to go back to the way they were, to reconstruct the world in the shape it was before everything shattered. At some level they realize that that's not going to happen, but it's probably not all that uncommon to be [angry] at the griever, blaming them for making it impossible...many friends don't express these feelings directly or, perhaps, aren't fully aware of them."

When I read this passage I had such a strong feeling of recognition that I felt almost ill. To be honest, there are times when I myself am angry that this has all happened and, on some level, I would love to go back to the person I was before Claire, to the relationships I had then...but not if it means going on without Claire. And then I feel frustrated that there are those out there who expect me to be the person I was two and a half years ago, who can't understand how impossible that might be.

Maybe because of those five minutes I am suddenly able to be gentler to myself, more protective of myself, more forgiving of myself than at any other point in my life. I know I have been traumatized, I know that I suffer through bouts of PTSD and depression, I know that I experience intense anxiety about the things that are in God's hands only. I allow myself to deal with those emotions, to be sad when necessary, to cry, to worry, to hover. But I also refuse to let myself wallow in the negative, because bottom line, I still have my baby girl laughing and running and dancing and getting into all kinds of mischief (not to mention her beautiful and healthy big sister, a true light in our lives). As Michael said from the very beginning, we will endure unspeakable pain and suffering now if it means that Claire will never remember the struggle or understand what we (and she) went through in order for her to survive. While those five minutes devastated me, they were same five minutes that that allowed Claire's failing heart to return to optimal functioning.

Looking Ahead

So to me, 2009 is full of promise. I enter it feeling older, wiser, and more purposeful. I have set goals for myself, some involving letting go and others, starting anew; moving forward in ways that were too overwhelming to contemplate last year but seem natural and comfortably enticing now. I accept the truths that I learned in 2008 and I honor them by living life to the fullest, by loving my children with everything that I have in me, finding joy in our moments together, carving out special time with my husband and giving myself space to be who I am and to feel how I feel. Every day is a gift, and so even when it's storming, I intend to get us out there, dancing in the rain.


Kelly Robinson said...

Just weeping. As a heart mom newly adjusting to the mis-information of the cardiologists(He's fixed!)and trying to absorb the unfolding realities...I can only thank you. You and blogger Steve have made me feel so much less alone. Thank you for sharing your journey and giving me hope that I can be brave too. May God help us all, five minutes at a time.

Jenna said...

Thank you for sharing!

Mom 2 Andre said...

I had goose bumps and holding back tears. I could feel as if I were there experiencing every moment. I can so relate. We almost lost our little one at the first procedure. Thank you for sharing this.

Danica said...

My daughter will be 3 yrs old in June. She had her first Heart Cath on 9/5/06. We were only supposed to be there 1 day, but didn't leave for 3 months. She had her 2nd Heart Cath. in the last week of that stay. I am happy to relate that she is now thriving, though both Mitral & Tricuspid Valves leak & she has 2 residual VSD's. And while her Pedi-Card & Pulmonologist are confident enough that she no longer requires the pulmonary meds, they said in her last appt in Oct. 08 & the one last April, that she will need another Heart Cath. so they can obtain accurate pressure numbers, etc. sometime in the not too distant future. Between her 1st surgery when she was 3 days old in which the Surgeons repaired her duodenal atresia, then her 1st heart cath at 2& 1/2 months, two weeks later her OHS, 2 months later 2 minor surgeries to implant a central line (yet an entirely different story to explain the necessity of 2 surgeries for the central line), a week later for the 2nd heart cath, and then 6 months later the minor surgery to remove the central line, one would think that I am a pro when it comes to handing over my daughter to those who would take her into an operating room where she would be sedated and cut open. I have signed those papers to acknowledge the possibility of death, what 7 times now? Upon reading how you stayed with your daughter in the heart cath room while she clung to you with what I am sure was an immense fear and desperation, tears burst from my eyes and my heart ached. Not just b/c I re-lived that gut-wrenching feeling in those moments where you cling to your child before leaving them prior to a procedure and that awful wondering of "what if's" of potential death and not being there and knowing while it happens, but also for what I seldom permit myself to acknowledge awaits us in the not too distant future. I am more than content with the steady path we have been upon since her central line was removed almost 2 years ago, that I intensely dread the scenario you painted in your post.
I am thankful I stumbled upon your post this morning though. The perspective of "the old friend" who is forever changed and lost, is not something I had really pondered, though I had recognized my relationships with certain friends and family memebers prior to my daughter's birth transformed to lesser ones, I never considered their perspective &/or loss of a friend in me. Oh, how I too, wish I could be that carefree person I once was, with my daughter right alongside me.
I dread, not only the day where I have to either hand her over or have to leave her knocked out lying in wait in an O.R. room for her next procedure, but also the day when she actually realizes and comprehends her disease and acknowledges her own mortality. For now I embrace her blissful ignorance.
The day her next heart cath arrives, I will, because I have read your post, request that I stay with her until she is sedated. I don't want her clinging to some stranger or thinking for one second I abondoned her in her greatest time of fear. Thank you for sharing.

Anonymous said...

Just "thank you" for sharing your 5 minutes. Our 5 minutes never really leave us, even after 23 years!! We live somewhere between despair and utter happiness remembering how close life and death really are. And we do it somehow with joy and gratitude, for our kids. we, meaning all heart moms and dads.

Michelle said...

Yes, thank you for sharing. As a fellow heart momma, I can also relate to your words. Very beautifully written. My daughter will be having her second heart surgery first open heart surgery in a few short months. The thoughts of this consume me at times. I know at our next visit she will be scheduled for a heart cath in preparation for this surgery. I am very nervous for all we will but mostly she will have to face again. I love her so very much and I think nobody besides God and other heart moms can relate to the feelings that engulf us.