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Jennifer, Grace & The Drive for Miracles
This is a "Blog" written by Jennifer Johnson about her daughter Grace, Golisano Children's Hospital and The Drive for Miracles. The photo above was taken on February 15, 2013 at the hospital. Grace passed away on February 16.
I have struggled all along with how much of our experience with Grace I should share.
But I will put a lot of it out there now. And here's why: when most people hear our story they sometimes cry and almost always say "I can't imagine".
I hope you never have to imagine.
If you don't want to, stop reading. It's okay.
I finally decided to write this because there are some people who will have to imagine the worst because that's the reality they will face. Families who will get devastating medical news. Families who will fight like hell to make their loved one better. Families who will give it their all, but will still find themselves standing there, watching their child die.
It's a very lonely place to be.
Maybe your friends have gone through trials and tribulations and have been able to support you to a certain point. But when you go past that point - people don't know what to say. You are in unchartered waters or so it seems. And that adds to the pain.
I want these families to know they are not alone. I might not know you or your medical crisis - but I've known that awful feeling of your child being on the brink of death. Will your child survive a birth they are not supposed to survive? Will she survive major surgeries as you anxiously wait maybe 200 yards away from the operating table? Will she survive operating room complications? Will she survive the sudden and acute problems post-surgery? Will she survive as a team of some of the hospital's best from all different departments rush to her room - sometimes called from their homes in the middle of the night? Will she survive as all the machines she is connected to are alarming and the numbers are dropping when they are supposed to be rising?
We went through these very close calls seven times with Grace. The eighth time -- the time we watched a dedicated staff administer CPR for almost 90 minutes and we counted as she maxed out on the number of doses of last ditch effort medications she could take. The eighth time -- the time we knew once again the staff had given her all they could, but it wasn't enough to keep her body working in this world -- we watched her die.
I want you to know I've been there.
Not so you'll feel sorry for me. But so you don't feel alone. It's a pain too awful to explain most of the time so you hold it in. It's a pain you don't want to burden others with. It's a pain that sneak attacks you several times a day. It's a pain your therapist calls PTSD. It's a pain that consumes your thoughts to the point it pushes out the happy memories like an infectious giggle or a constant smile through chronic pain.
Who can you explain these feelings to?
Who can possibly understand?
It's the small group of other parents who have been through it who can.
Where do you find them?
Often times they eventually they find you -- whether it's through established organizations, grief counselor recommendations, or the good-hearted people who are in the business of supporting families in these tough spots. Sometimes they can connect you to others who are walking in your shoes. I meet monthly with three other moms who have not only lost their children, but who have also gone through so much of the medical hell I explained above. Thank God for these women! Along with my incredibly supportive husband and family, they are my salvation.
But before this support fell into place for me, there was help. It was help that hung on the walls at Golisano Children's Hospital. If you know any of my family's story, you know how passionate we are about that place.
You may know we searched the country for the best care for our daughter, and were ready to uproot if needed, but found all the expertise, experience and equipment we needed for our daughter's very complex case was right here.
You may know the medical professionals we worked with went above and beyond in terms of their compassion and dedication. I've said that, looking back, I don't think Grace really was ever intended to be in this world long term. Her body just wasn't built for it. But the staff's work gave us 16 months with her that has changed me and many others forever.
Before she died, we thought she'd made it over the big hurdles. Grace survived major surgeries when her heart was out of place and she had almost no lungs. She survived going onto and eventually coming off a heart-lung bypass machine. That was a hell I thought I'd never I'd go back to
But suddenly on February 15th, 2013 it was staring us in the face again.
A problem called pulmonary hypertension reared its nasty head in the middle of her fifth surgery. It was a problem we had monitored and tested and thought she had beat. But we were seeing why it's called "the silent killer."
As one team continued their work in the operating room, another came out to us in the waiting room to say the heart-lung by-pass machine might soon be the only option. The odds of surviving it a second time were not good.
Think of the worst moment of your life. One you never, ever want to go back to.
Suddenly we were there again.
The doctors went back in the operating room. I tried to figure out how to get to a place where I could wrap my head around the fact that there was a good chance my child was about to die. No hug or cup of coffee can help at a moment like that.
I left the pediatric surgical waiting room and walked a little way down the hall. That's where I saw it, hanging on the wall. A plaque read "May the children have the courage, the parents have the faith and surgeons and the staff have the hand of God."
It was comfort at a time I thought nothing could be comforting.
The plaque was part of a major gift from Mark and Marcia Siewert. I did not know them well, but I had met them a few times and they were lovely. A decade earlier their older, teenaged son lived for months in the PICU at Golisano Children's Hospital. One of them was always at his side -- day and night. They fought for him. They did all they could. But he died. Why? Why are good people seemingly punished? Why is anyone seemingly punished that way? Why were we? I quickly questioned all the decisions I'd made and second guessed all my actions.
Photo of the message from Mark and Marcia Siewert
In that moment I concluded that I didn't know why. But I was staring at a gift from a family that decided, even after their son had died, that this hospital and this staff (that at that moment was trying to save my daughter's life) was worth the investment. After the worst kind of loss, they believed in this place. They believed that kids that would come after their son, like my daughter, were worth investing in. They wanted to help future families like my mine. The Siewerts made a financial gift that made this hospital possible, that made my daughter's care possible.
Grace pulled through that crisis in the operating room. She survived another in the PICU. But a few hours later, in the early hours of February 16th, 2013 as we stood near the end of her bed and the staff gave it their all, she had a third crisis that she did not survive.
After Grace died, we had asked people to give to the hospital in her memory. The money helped along a $100,000 fundraising effort we had started with the local Kiwanis Clubs four months earlier to pay for a NICU room in the new Golisano Children's Hospital. We met that goal and are so happy that the room dedicated to Grace will be a little bit bigger than the others to accommodate the heart-lung bypass machine and the staff needed to run it 24/7.
Then - the money continued to come in.
Some from friends and family. Some from 13WHAM viewers who only knew Grace through TV stories and updates. Some were big checks. Some were donations from little kids who emptied their piggy banks because they wanted to do something for "Baby Grace," who they prayed for each night with their parents. Want a good cry? Come to my house some day and read the lovely notes that people sent us after her death.
Several times a week I hear from families who are also in the middle of a child's medical struggle or crisis. They ask me to help in some capacity. I feel badly, but right now, I can't. I read the message and freeze, knowing it's about to take me back to my moments of crisis in the hospital with Grace. I want to help them but don't have the emotional reserve right now. I'm doing all I can to get through my journey of loss while still being a mom to our 3-year-old and yes, if you wondered, I am pregnant again. Even when Grace was alive our family didn't feel complete and we wanted to add to it.
There was a lot that happened in the days and weeks after Grace died that I don't remember. But the memory of how much the Siewerts gift and their plaque meant to me stuck. It has stuck in my mind as I've wondered - what to do with the extra money donated to the hospital in Grace's name? How do I say thank you to everyone who supported us? How do I help these families that are struggling and have asked me for help?
The answer I've come up with will hang on the wall in the new Golisano Children's Hospital. The gift my family is working on now, in conjunction with 13WHAM as a new partner, is a $350,000 gift. The money will go to building the new hospital and the necessary equipment to save lives. But the way our gift will be demonstrated will be through a centrally located healing garden, hopefully with a reassuring message on a plaque I have yet to come up with. The garden will be next to the elevator on the main floor so almost everyone who enters the building can see it.
A lot of people might never notice it. That's okay.
But I hope the families who will run into crisis in the future, the families who have just gotten a devastating diagnosis or test results, the families who are waiting while their child is in surgery or the families who are walking out of the hospital without their child because he or she will never be coming home - will see it.
I want them to see it and know they are not alone.
Raising this money is a big job - and fortunately my family is not alone in the challenge. My 13WHAM family has not only embraced my family's journey but the mission and the importance of this new hospital for our entire region.
As a station, we are once again partnering with WHAM 1180 and 100.5 The Drive for the Drive for Miracles radio-thon to benefit Golisano Children's Hospital. Last year our combined efforts raised $220,000 during the two-day fundraiser. This year it's happening on the radio on Thursday, February 13th and on the radio and 13WHAM News on Friday, February 14th with the proceeds from the 14th being donated in Grace's name.
Donations made online by clicking HERE, will also be made in Graces name.
Leading up to the 14th you'll see stories on 13WHAM News about families that have inspired me: families that have given back to the hospital at a time of great loss.
And on the 14th I plan to be at the hospital to be a part of our live coverage. I may not be graceful that day as the loss of my Grace there, almost exactly a year earlier, will be heavy on my heart. I'm sure I will cry. A lot. I've cried several times as I've finally gotten these words down on paper.
But it's worth it. Words are powerful. They can help when you need help the most even when they silently hang on the wall in a hospital.