Dear Reader,
I am writing to you from the window of a coffeeshop. I sip from my hot mocha, listen to my headphones, and look out at the cars going by. Where I live, there has just been snowfall, and the pedestrians are like me on my walk here: bundled, hunched against the cold, hurrying. Inside, people surround me, but I’m trying not to engage with them.
I’m thinking about you. Who are you? Why have you come?
For years, I spent countless intent hours searching for information that would help me solve the mystery of my daughter’s health issues. Even when we thought we had a solid diagnosis — laryngomalacia when she was an infant, repaired double aortic arch when she was a baby, reflux when she was a toddler, eosinophilic esophagitis when she was a little girl — I wanted to know how to handle it. I wanted to know how other parents made their children’s lives easier despite the diagnoses. I wanted to know how other parents made their own lives easier despite the diagnosis.
I was hungry for connection and knowledge. I was desperate for validation, advice, and other parents to either assuage my fears or tell me how they made their peace with the same ones.
What do you need?
As I try to imagine you and what has brought you here, I am mostly shooting my imagined support into what looks like a mirror: me, years ago, needing what I needed. That might be what you need, and it might not be.
What brings me to write to you is an article I read today. Last year, my friend Kelley Clink published a shatteringly beautiful and utterly heartbreaking book about her brother’s suicide twelve years prior. I actually remember the day that I heard her horrific news, and how my husband and I sunk to the edge of our bed and simply held each other’s hands and tried to shoot love into the universe on her family’s behalf. Her journey through the grief of the years that followed is well worth reading, but what makes me bring up her story here is this article Kelley published on Huffington Post last week. She had been asked to talk to a book group who had lost a member to suicide. They asked her how to move past survivor’s guilt, and she writes:
I wanted to be the hero, the sage, the one who knows where all the land mines are buried in the field of grief and, most important, how to dig them up safely. Then I remembered a quote that one of the other women shared at the end of our meeting, from the author Marianne Williamson.
“Something very beautiful happens to people when their world has fallen apart: a humility, a nobility, a higher intelligence emerges at just the point when our knees hit the floor.”
And I realized, “Who am I to stop anyone’s knees from hitting the floor?” The intent — to decrease someone’s suffering — is pure, but the action robs survivors of the validation their grief needs. The most powerful, most helpful thing I know to do is to tell the truth, even when it isn’t what I want it to be. I also remembered that when you stop trying to chase away the guilt and the hopelessness, they have room to become kindness and compassion. When you give them space, they can lead you to empathy and love.
I know, writing all that I do about our journey from diagnosis to misdiagnosis to what lies beyond the proper diagnosis, that many people may be coming to this site without that same future ahead of them. Some of their children have eosinophilic esophagitis and always will; it is not a misdiagnosis for them. Some of their children will have a vascular ring repaired and never need medical attention again, and all our fraught years will not be repeated for them. Some parents may be coming to this blog terrified and leave relieved; some parents may be coming here feeling calm and leave quite frightened. But, as Kelley says so eloquently, having come through it the way we did left the space for a larger purpose. There is room for me to give this path meaning — for me and for you.
What can I give you?
As I wrote in my first blog post, “…I write this blog — for me, hit over and over again in a fight to parent my children according to my instincts, and for you, who may be where I was and have been: alone in the dark, searching for someone who understood. If I understand even a piece of what you are experiencing, and if you’re anything like me, I’ll be glad to know you.” What I didn’t say then, but I want to tell you now, is that this odyssey is like so many that parents of medically mysterious children face. I want these words to capture the fear, curiosity, joy and devastation that accompany the experiences we’ve had, but I also want to add as much value as I can for the people who come to share the path.
Tell me, please: who are you? why are you here? what do you need?
With hope,
Debi
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Your story definitely speaks to me. As a parent it is frustrating when getting the right help for our children takes longer than it should or gets caught up in someone thinking they know what the problem is without thinking further. I’ve had docs, who don’t know me or my child well, imply that they know the situation better than I and blow off my observations and not investigate things so a cause could be confirmed. At times it seems like they’ve written off even trying anything. When I keep pushing, some imply I’m jumping to conclusions but I’ve been living with this child for many years. Every time this has happened in the past, I’ve ended up being right by not assuming I know anything except that there are unaddressed problems. So tired of doctors and insurance companies.
I hear you, AJ. I absolutely do.
I believe that doctors know medicine, disease, and health conditions way, way better than I do, but I know my daughter way, way better than they do. I wish there was a way to make this partnership — where we both have important information to share with the other — more of a given in pediatric medicine.
Thank you for commenting. I am glad that what I’m saying speaks to you!
I don’t know what’s wrong with me. I have found some possible answers, but nothing complete or definitive. It helps me to know that–even though I feel terrible that your family had to go through so much unnecessarily!–you spent years not knowing what or why or how, yet you did eventually find an answer, even if it wasn’t the one you would have chosen. I just need to be reminded sometimes that answers aren’t always close at hand…and that my doctors aren’t the only ones who screw up and cost their patients years of pain and frustration.
Barrie, I hope you find the answers too. I hope everyone finds the answers. In a million years, we would never have imagined how our journey would end — and the truth is, for children with a congenital issue like Sammi’s, the journey will never completely be at an end. What we take with us is the knowledge that instinct is powerful and worth following as far as it can take us. I wish you stamina for your own journey, and an answer that gives you hope.
hi. so. i am anne in NY , 56 year old mama to 7 kids – 2 i birthed, 5 i adopted, one has passed away… the 5 i adopted have special needs – they have a ton of different diagnoses between them! one of my girls has larygeomalacia , similar to your princess… your words sooth me , make me feel as if someone out there gets all that goes along with having a child with special needs… i read alot of special needs types of blogs. yours is one of my favorites! keep writing your beautiful words xoxo anne
Wow. Anne: the world is lucky to have you. Thank you for commenting — and good luck to all your special children!
I come here because my son’s journey with a vascular ring and misdiagnosis mirrors your daughter’s. Some days I can’t even read because the reality is so painfully real.
This is also why I read your blog, Renee — I get it. It is so hard to watch our children struggle. I’m glad that we both have access to people who understand!
Hi,
My name is Jackie. My granddaughter was born with a double aortic arch and vascular ring. She had “raspy” breathing from the very beginning. Worse at feed and burp times. At nine weeks old when my daughter was burping her – the centre of my world stopped breathing; turning blue (her whole body). Of course, my daughter flipped out – her boyfriend (baby’s daddy) called 911 and the 911 operator talked him through CPR. She came back to us!! Went to the local hospital – got transferred to a Regional hospital and then she had another episode while there. At that time we got transferred to Halifax, NS (IWK Children’s Hospital). They did a rigid bronchoscope which found there was an external force on her trachea. They kept her sedated and performed a MR Angiogram which showed the whole picture. This was Wednesday night. The anesthesiologist who would work with the team was to return the next Monday and so my little darling stayed on her ventilator until her surgery which happened on the Thursday of that week. After an hour and a half we got word that the surgery went great. The did another bronchoscope before they let her wake fully up – this too looked great. We had her check up two months later with an echocardiogram which shows everything looking good. But now seven months later she has had two episodes within a few days of gasping for air – once while she was sleeping on her back and the other while she was in her car seat. We had a scheduled check up with her pediatrician who is downplaying it to possible miss-swallowed saliva! She was also diagnosed with tracheamalacia and is on reflux meds. Thanks so much for your posts!
Jackie – THANK YOU for writing! Your granddaughter sounds like so many children with vascular rings. Because my daughter had persistent issues that seemed unrelated, we had the opportunity to check on the state of her trachea several times in the five years after her repair, and it remained more than 60% constricted for that entire time. By 7 years after her surgery, the tracheal constriction was down to 30%. It is a very long process. Your granddaughter is lucky to have so much family surrounding her!
I know this is an older post, but I wanted to say that I found your story when I was researching eosiniphilic esophagitis and I couldn’t stop reading. I went to the beginning and soaked up the whole crazy story that you write so well about the years of questions. What I see running through all your writing is a deep love for your children that can endure any challenge. I don’t have the same type of story, but reading yours definitely made me aware of the need for parents to be the advocate and keep pushing for answers. My daughter and I recently visited a specialist who insisted that what she needs is for me to talk to her in a positive way and help her believe in her own healing. He answered none of my questions. I will keep trying. It turned out my daughter does not have eosiniphilic esophagitis by the way. Thanks for sharing your story.
Holly, I am so glad you reached out to me! While I’m glad your daughter doesn’t have EoE, I’m curious as to how she was diagnosed and how you figured out it wasn’t that. I’m deeply concerned about the flaws in the diagnostic process. If you don’t mind sharing, you can do it here, or email me at debi@swallowmysunshine.com.