A little scare and being vulnerable
Paul has been sick with a worsening cough for the last two weeks. Last night, I was headed out of the Nashville airport for a work trip and Dan called to let me know that Paul did not look good and his oxygen saturations had dropped (in the 60s) and he was bringing him to the emergency room. My flight was delayed and I was able to cancel the trip thanks to my tremendous colleagues, Josh and Tina. I arrived at the hospital to find Paul in fairly good spirits with lower than normal 02 saturations. He was sort of borderline… Heart mom speak- his baseline is 86-88, he was at 70-80. This is pretty typical (all of our saturations drop when we are sick). We have been to the doctor a lot in the last few weeks. This was our second ER visit in the last two weeks (the first one was a total false alarm). Paul has had a clear xray, good heart sounds, good liver placement, and clear sounding lungs. Dr. Parra was actually on call and spoke to us gently and he sent us home telling us that we should probably throw out the pulse ox monitor because we know Paul well enough to know when he’s not ok. I love Dr. Parra, mostly because of how he loves Paul but also because he is not afraid to tell us what is on his mind. I could feel him last night thinking about how he wishes we could let go a little. I do too.
For the last decade- in one way or another -I have made a living by a willingness to be vulnerable and let others do the same. Vulnerability is what mental health advocacy is all about. Most good research is about opening space for participants to be vulnerable with you. Helping someone start a company is mostly about allowing them the space to be vulnerable as you work through all the nuances of what this entails. Marriage begets vulnerability as does church and advising a sorority chapter. Teaching is about being comfortable in the “deep zone” life stuff and so is coaching. So, just to be vulnerable, being a heart mom is the hardest thing I have ever had to do. Ever….EVER.
Sometimes I am so amazed that this is our life. This is the life we were given. HLHS is still such a “new” disease- there is so much mis-information, false information, old information, and new information that its hard to discern what end is up. On any given day I can read about a child that went into “sudden heart failure” and died (likely this is a mis-informed reporter, sudden unexplained and immediate heart failure is pretty rare) and read about a child who was discharged 8 days after TWO open heart surgeries. Seven people tell me I am crazy for letting Paul go to school and then three that really count (Parra, Ladd, and Karen) support it fully. I know children who have died from HLHS and I know a lot more who are alive. I have read statistics that 50% won’t make it until their fifth birthday and others that say HLHSers have a 70% chance of survival. I have heard doctors tell me that the Fontan circuit is an imminent disaster and others say that while its not ideal there is no reason to think kids won’t live well into adulthood without the need for any intervention. I know a child that was riding a carousel a week after her Fontan and another that was transplanted within a year of her Fontan. I know these kids online and from local gatherings and its almost impossible not to love each one of them. Sometimes I wish I could unread things or that I did not know what I know or wasn’t smart enough to read things and understand them fully. What would happen if I just stopped getting a google alert that in one week sends me obituaries in the “hypoplastic left heart syndrome” query and another sends me articles about stem cell research and left ventricle rehabilitation? What would happen if I never read my facebook news feed full of prayer requests, in memory of… events, and pictures of children who were once “probably not going to make it” doing stuff like riding on a tractor and taking ballet lessons?
I often try to remember who I was before this horrible disease came into our lives. I was a teacher, a yogi, a kick ass cyclist, calm most of the time, intense but compassionate, and full of light and freedom. I want that back. Every time I close my eyes I think about this experience we are living in and what we lived through. I have to actively stop my mind from thinking about HLHS. The truth is some days I just want my life back with Paul in it as a heart healthy little boy. The moms I know that cope best with heart disease are compartmentalizers; they are incredible at living in the moment and taking each day as it comes. They are calm and confident- they know their kids so well and seem to rarely over-react. They have let go; let it go… and I wish I could do that well. I try but I fall so short. Should I just pretend that Paul is totally fine? I can’t -he has that damn tube as a constant reminder of a surgery recovery that was supposed to last 7-10 days and lasted 70. He’s smaller than other kids his age and is blue. I LOVE him no matter tubes or colors or breathing or terrible twos - I love him more than I have ever loved anything in the world but I struggle to not to see him as a child with heart disease.
Nobody talks about this stuff as a heart mom. Maybe that’s because they don’t feel what I feel…Maybe what I am writing is a big no-no in the special needs mom world- aren’t we all supposed to just say we are just grateful for today? (I am totally, by the way). I certainly don’t feel lost every moment of every day but I also struggle to see the other side. In so many situations, we can tell people there is another side. Is there in HLHS? Really? I don’t know- maybe -but when folks tell you your child’s permanent physiology is “doomed to fail eventually” that doesn’t feel like another side to me and on the flip side I know 20 year old HLHSers who are no where near having a failing physiology.
I long for normalcy. I hate the pulse ox machine. I hate the gtube. I sometimes wonder what I did to cause HLHS. What I did wrong since Paul is not talking yet. What I am doing wrong with his feeding schedule and why while Paul loves me- his Dad is his entire world…. Does he sense my issues with HLHS? He has to… I wish so badly that all of our sweet babies could be fixed forever and we could all just get back to living. We are living with Paul, don’t get me wrong, we are at the beach, on the move, in school, eating Mexican food, watching Mickey Mouse club house, falling down and getting back up. We are working, going to college, learning about Reiki, doing counseling, looking for a house, making ends meat, going to church, and laughing out loud everyday at each other and especially at Paul who has the funniest little personality you ever did see. He is wonderful in spite of my over reactive and protective hovering of the last two years. I wish I didn’t worry with every sniffle, every cough that something was terribly wrong. I wish that we were at whatever other side there is to HLHS. I wish this was easier for me. My energy is linked to his energy and in turn his wellness and I have to put good stuff out there for him to receive.
I pray every night to God. When I finish sending the best energy I have in me towards Dan, other sick children, and friends that are hurting. I then ask him to help me be better at being a mom- not just a heart mom, but an actual Mom and better at being a wife and friend and employee etc.
I talk to God and I ask Becky and Ethan and my grandparents and the little angels that HLHS took far too soon to listen in…I ask for Paul to live longer than we do. I ask for him to be okay to get through this cold or that teething situation or to be more patient with the dog or to eat better- whatever’s worrying me that day. I then ask God to “choose us”. I mean “choose us” for a miracle of left ventricular growth and full heart function (more rare than sudden immediate heart failure)…It occurred to me the other day that maybe he is choosing us to have a kid that actually fairs pretty well with sickness, has pretty good heart function for an HLHSer, and eats great for a heart kid. Maybe he is choosing Paul to be one of those 20 year old with no imminent or immediate need for concern about their health…. I am still every day open to a miracle (I have witnessed miracles happen and know that He can and does…) Maybe the real miracle is in the everyday life stuff- that we are here, together and he’s ok. I hope Paul will defy the odds. I hope he beats the statistics and that medical science catches up with him… with all of our kids.
I have heard from a lot of new HLHS moms that they have read every page of our blog. If that’s you- close your computer. Get off the internet. Go be with your child or go do something that reminds you of life outside of this disease. Trust me- its worth it. You are worth it. Your child is worth it.
We just get one life… As my celebrity boyfriend, Gavin Degraw, sings- ”love has a reason-there’s a meaning to the world- we are given love...It’s always been good to me.” Thanks for loving us because of an in spite of who we are.