Isabeau Hope Goodman's story – Bravelets

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Isabeau Hope Goodman's story

Posted on September 26 2017

Isabeau Hope Goodman's story
The dark hospital room is filled with blinking lights, poles with pumps pushing medicines through plastic tubes into babies. It is Christmas Morning 2007 and looking down, we can see our newborn daughter's heart and lungs through a thin yellow film.
 
She is eight days old and is recovering from her first open heart surgery. They cannot close her football shaped chest incision until the internal swelling goes down, and so there she lies. So small. So new. Her golden heart exposed to the world for five days. In a minute we will hear that it is time. Isabeau's first Christmas present will be a bright new scar healing on her chest and we cry with joy.
 
I remember back when that was our main concern: "will the scar be big?” We were new, like our baby daughter. This was before we spent months living in the hospital hoping she would just live through the night, watching the bed under her turn red as blood seeped out of her neck, at home pushing a foot-long tube into her nose and stomach to feed her with a syringe because she did not know how to suck a bottle for four months. Before her 28 therapies a month, 18 syringes of medication a day, elevating her when she slept to keep stomach acid from burning her esophagus, a helmet to reshape her flattened head, specialists for her bent spine, specialists for her misaligned teeth, hearing tests, a dozen intelligence tests, special education. Before her second and third heart surgeries. Before watching her wheeled into surgery, and you say "see you in a few hours" not knowing if the last thing you say to her is a lie. Before watching your daughter's life, reduced to plummeting numbers on a monitor, nearly cease as the nurses and doctors say 'it's an acute desat -- probably a blood clot keeping blood from entering her lungs -- we can't fix this in time'.
 
And through that she survived, and we survived because of the strength and caring of others, helping her, helping us. Caring anonymous people, helping strangers.
 
I am writing this to show you that during these times the world can become unbearably dark and isolating. It is through the smallest kindnesses that we survived. It feels like the entire universe has conspired to steal your dreams of a happy family. It feels like every doctor's visit brings more bad news, more things that are wrong with her, more things she will never do like 'typical' little girls and you have even more work just to keep her alive.
 
When you live in the hospital, you sleep on vinyl chairs called 'beds' under thin sheets, going through the most emotionally naked moments of your life, half-dressed and ten feet from a noisy nurse’s station in a room with 3 other heart babies crying, trying to be awake and intelligent enough when the doctors finally make rounds, and your hair is sideways, and your face is flat and red from the vinyl pillow, and you almost got two hours of sleep last night between attempted feedings (every 2 hours, an hour and a half each), and if you don't sound coherent and ask intelligent questions the doctors will dumb down the news, and you will learn nothing. And if you learn nothing your daughter's chances go down.
 
Night becomes day becomes night in always lit hospital hallways. Every few days you drive home to get new clothes, and on the way back suddenly find yourself driving through sobbing tears on the 101 until you arrive at the hospital, park your car and go up to The Room looking happy and optimistic for your tiny baby. It will be ok, you say.
 
But it is horror. It is every nightmare scenario. Our first surgery, we got to know four babies, half of them didn't make it. It is very real, it is every hour of every day and it never, ever goes away.
 
And we the 'hospital families' will show the outside world our happy faces. We will let you believe the movies about sick kids and the inner strength that it builds in parents, but it is all a cover. Inside we are shattered and exhausted. Broken and often just getting by, tired to the bone. Tired of worrying, of working five times harder than other parents just to keep your kid from falling so far behind hey could never catch up. Tired of hoping... hoping that she will live long enough to have a first kiss.
 
But... we learn that we are not alone in this. I remember when we first saw her laying there as a couple, she was covered in tubes and wires and tape, we were so happy and sad, we just held each other shaking and crying softly. That day a quiet gift of tissues placed near us by a CT-ICU nurse was a ray of bright light. Weeks later, a donated plastic wagon let us tour the world outside her room, O2 tank and med pumps and monitors in tow. She smiled  as we pulled her down a hallway to where the sunlight could fall on her face for the very first time. After her third surgery, a volunteer's quirky sense of humor made my daughter grin and walk, allowing the long tubes sticking out of her belly and chest to drain fluid from around her lungs, so she could breath. So many moments. Writing about these memories still brings me to tears and I am so very thankful.
 
 
When she was 3, she got to see Starlight in action when my boss Ted Price donated a new game center to Children's Hospital Los Angeles and she helped cut the ribbon (mostly, she IS just three). Our company, Insomniac Games, has generously given a game station to a different Children's Hospital for several years now, and usually to hospitals even more needy than CHLA. Afterward I got to show Ted and Angel Montanez of Starlight around the hospital sharing Isabeau's story. Floor by floor, so many stories. They were amazed at all we had been through. Ted wondered how we survived and I told him flatly, with the love and support of amazing people, most of whom were strangers.
 
And we had it easy. Some kids never go home. Some have dozens of surgeries. Some never leave their wheelchair. Some have no cure.
 
And so we wish to thank those doctors and tireless nurses for never giving up hope. Never ceasing to inspire us and even the difficult task of telling us the hard truths. Simply amazing people, doing the impossible every day. Isabeau is nine years old now 3555 days. 
 
If you are reading this, you have helped many families who can't thank you themselves, so I'm here to thank you for them. You change lives. You make a difference.  Thank you.
 
-Craig, Julianna, Isabeau and Isaac Goodman.
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  • Larry Kluge: October 15, 2017

    Hi Isabeau:

    You are certainly brave and now have joined the many children involved with Saving tiny Hearts who are tiny Heart Superheroes™ (savingtinyhearts.org). You are certainly BRAVE!

    Last night we celebrated our 12th Annual Gala here in Chicago with over 500 in attendance all for your benefit and the millions of children like you who have been born with the NUMBER ONE BIRTH DEFECT Congenital Heart. We have no paid employees and every dollar we raise goes to support life saving research.

    We wish you abundant good health and happiness and we are here for you…

    Larry Kluge
    Chairman
    Liaison to the Medical Advisory Board