$2 Million hospital bill, and no insurance. How the Shriners gave us HOPE

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It’s hard to imagine being hospitalized with over $2 Million in expected medical bills and no insurance. That was our situation, August 4, 1982. Burned children with no insurance, is a trauma center’s worst nightmare. Like most 8 year olds, I was completely unaware my dad’s employer no longer offered insurance on dependents or that we had not secured a replacement insurance policy. My friend Jeff who was burned with me, only 7 years old, was in a similar predicament. Like so many families struggling to make ends meet, our situation was not uncommon in our neighborhood. We were your typical hard working, blue collar family who lived pay check to pay check, with my dad working 70-80 hr weeks just to pay the bills. In addition to the overwhelming financial burden of pending medical bills, our parents were also struggling to come to terms with the harsh reality that their precious children just suffered a severe trauma that would require a lifetime of treatments and healing. I still remember my mom recounting how she truly believed they would just bandage me up and send us on our way, completely naïve to the severity of our injury.

Unexpected generosity

The first week we were hospitalized at Grady Memorial Hospital, Atlanta’s public safety net hospital. They have the distinction of getting all the cases other hospitals don’t want to touch… i.e. burn trauma patients, much less uninsured burn trauma patients. Our financial responsibility totaled $8,000 for the first week, about $7,999 more than we had in savings. Luckily my grandparents loaned us the money to cover the expenses for the 1st week but we still had no idea of how the cover the upcoming $2 Million. Through multiple media outlets, the Yaarab Shriners in Atlanta learned of our situation and approached us with a lifesaving offer… transfer Jeff and I to their world renowned pediatric burn center at the Shriners Hospital for Children in Cincinnati, Ohio. Furthermore, guaranteeing our recovery.

Their commitment included the treatment of our burn injuries until we reached the age of 21, inclusive of all reconstructive surgeries, rehabilitation therapy and temporary relocation housing for my mother, with no expense to us whatsoever. Talk about a miracle. How could we ever repay their generosity? Until then, we had always seen the Shriners at street corners fundraising or at parades driving around in their funny little go-carts with no comprehension of the impact they had made on the lives of millions of kids. I still remember like it was yesterday my first plane ride being on a private jet the Shriners arranged to transport me from Grady to their hospital in Cincinnati (unfortunately I didn’t get to see much of the view since I was strapped to a gurney but it was still pretty cool in the eyes of an 8 year old). Like our guardian angels, they worked behind the scenes with no need for public adoration. My parents and I are convinced they were the serving hands of God in the flesh.

Hope and a future

Outside of their medical generosity, they provided the greatest healing treatment of all – HOPE. They assured us life would go on and I would resume life, although different and more challenging than most 8 year olds. They administered tough love daily but in proper doses. They made us aware that my scars would not go away; that I would have to adjust and adapt to the “new me.” Secretly I hoped they were wrong and my scars would just magically disappear one day, but their advisements came to fruition.

One obstacle, though small in comparison in the grand scheme of things, was the task of staying on track with my 3rd grade peers. I missed the first 6 weeks of the 3rd grade and was physically unable to use my right hand, my writing hand, which seemed to be an insurmountable challenge. The Shriners immediately worked with me to use my left arm instead, teaching me how to feed myself, brush my teeth, throw a ball and even write left handed. Surprisingly, with the help of a tutor provided by the hospital and my school assignments hand delivered weekly by my dad commuting from Atlanta, I was able to stay on track with my 3rd grade peers and maintained my straight “A” record – handwriting was a little off but they cut me some slack.

What most don’t realize is my medical treatment didn’t end when I was discharged from the hospital after 10 weeks. Due to the severe thickening and contracture of my scars, I was fitted with custom compression suits that went from my ankles to my neck to my wrists. I wore the compression suits 22hrs a day for 3 years, only taking them off to shower. I had 3 of these suits and was refitted every 3 months as the suits lost their compression with the extensive use. In addition, I was also fitted with custom orthotic braces on my chest, neck and face. Like the compression suits, these braces applied pressure to my burns to minimize scarring and increase my range of motion. I was told the braces were $500 a piece and the suits $150 a piece (in 1982 dollars mind you) and paid 100% by the Shriners. The evolution, sometimes worsening nature of my scars, required me to see their surgeons every month for the 1st 6 months, every 3 months for 2 years, and then every 6 months for the next 5 years.

From 1982 to 1995, the Shriners covered 100% of all 30 of my surgeries, never asking us for a penny or my current health insurance provider. We are forever indebted to them and proudly donate every time we see them standing at an intersection with their buckets wearing their funny little Fez hats. One of the greatest affirmations of the miracles of the Shriners work was when I was selected to compete in the Ironman World Championships in 2012 and featured during the televised NBC broadcast. Who in 1982 would have believed 30 years later I’d be racing in the World’s toughest one day endurance event, Kona, Ironman World Championships. The Shriners were instrumental in giving us HOPE and teaching me getting burned was no excuse for not being successful in life. Thank you Shriners for all you do!

ABOUT SHAY

Shay is an All American and World ranked triathlete, burn survivor with scars over 65% of his body and is a sought out national motivational speaker. Despite being told he’d never compete in sports again at the age of 8, Shay is living testament to “Anything is Possible”: 4x Ironman, 4x member of Team USA, ranked top 1% of Ironmen worldwide and has competed in 9 triathlon world championships, including the Ironman World Championships in Kona, Hawaii. His mantra has always been to not merely be a “finisher” but to be a “competitor.” If you enjoyed this article, I encourage you to check out my other posts.

Thanksgiving! 35 surgeries and 32 years later, why I’m so thankful

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Picking my kids up from school this week I noticed the mosaics of construction paper Thanksgiving turkeys with handwritten messages “I’m thankful for…” written on them. One in particular said he was “thankful for hedgehogs”. This grade school exercise is undertaken yearly to teach our children the importance of being thankful, but how many of us adults take the time to reflect on our blessings? We say thank you to co-workers and spouses, but how many of us are truly thankful and take the time to really let those around us know we appreciate them.

What are you thankful for?

I’d like to ask for you to post what you’re thankful for this year. I’ll get it started by saying, I’m most thankful for a beautiful and loving wife, 5 energetic and healthy children, a family that stands beside me in the direst of straits, and a job that has provided all the necessities for my growing family. I am also thankful for my faith, a faith that has shown me what life is really about and teaches my success in life is measured not in money or promotions, but by the impact I have on the lives of others. I am extremely thankful I learned at the age of 8, that life is what we make of it, for better or worse, and no one is to blame but yourself for lack of success.

Over the past 32 years, I’ve underwent 35 surgeries, spent 3 years wearing pressure fitting garments and plastic braces, had to learn how to walk again due to being bedridden for a month, underwent hundreds of hours of rehab and took over 3 years to lift my right arm over my head, and still can’t turn my head to the left without losing hearing in my right ear and the corner of my right eye and mouth pulling severely. This was just the physical side of it. The mental pain was much worse but it more than anything helped mold me into the person I am today. At the age of 8, I experienced the earth shattering news of a doctor telling me I’d never play sports again. At the age of 18, I experienced several college fraternities telling me I wouldn’t get a bid because of my burn scars. From age 8 to 25, I experienced never having a serious girlfriend, believing marriage and having children were a fairy tale. I have had the good fortune to experience absolute hell and as a result, I know what Heaven is and spend every waking moment in pursuit of a more fulfilling life. Believe it or not, I wouldn’t trade any of those experiences. I actually feel sorry for others because they haven’t experienced what it’s like to think you’re the Biblical Job, to think your sole existence was to prove faith and a positive outlook on life conquers all. Like Job, my original blessings have been doubled and my health restored.

During all those years in the hospital I don’t ever recall feeling sorry for myself. I recall feeling angry and confused, but more frustrated than anything as I couldn’t do many things I used to do so easily. As I focused on my recovery, I realized progression would only be achieved by focusing on what I had gained in life as opposed to what I had lost. Any time I had doubts, I looked around the hospital and saw so many children burned far worse than me laughing and going about their life as if nothing was wrong. I refused to believe my life would be dictated by being a burn survivor and was willing to accept that some things would never be the same. However, never being the same didn’t mean it couldn’t be better!

It is easy for us to complain given the complexity and stresses of today’s world. In these times, I encourage you to reflect on your blessings and only entertain positive thoughts. We all have struggles, but you have the ability to overcome and achieve the greatest version of yourself.

ABOUT SHAY

Shay is an All American and World ranked triathlete, burn survivor with scars over 65% of his body and is a sought out national motivational speaker. Despite being told he’d never compete in sports again at the age of 8, Shay is living testament to “Anything is Possible”: 4x Ironman, 4x member of Team USA, ranked top 1% of Ironmen worldwide and has competed in 9 triathlon world championships, including the Ironman World Championships in Kona, Hawaii. His mantra has always been to not merely be a “finisher” but to be a “competitor.” If you enjoyed this article, I encourage you to check out my other posts.

Day 1: Watching our 2yr old fight for her life… 10 days to be Thankful!

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It is often said you never truly appreciate life until you are about to lose it.

As someone who nearly died at the age of 8 due to being set afire by a neighbor’s child, I can assure you I have a new appreciation for the blessings in my life… the ability to walk, the ability to lift my right arm over my head and just the ability to even bathe myself. Introduced to pain and the unfairness of life at an early age, I can honestly say I have always looked forward to each day with enthusiasm and the chance to make a difference in the world. I can also say:

there is nothing I have wanted more in life than to have a wife, kids of my own, and the ability to give them the ability to see life through my eyes…see life for the daily miracles we are given.

Death is natural and we all know it will take us all one day or another, but we assume it will take us before our children. As a parent, there is nothing more sacred in our life than our kids. There is nothing we wouldn’t do to prevent the suffering of our kids but we all soon realize we can’t take away all the bad things in this world. Instead, we have to rely on our faith to guide us through these moments of despair to help us embrace these soul searching times for the stronger individuals we and our children will become. This Thanksgiving, I am sharing the 10 days of our dramatic journey as we watched our little Stella fight for her life.

Each day brought us closer to God and affirmed our belief that things work out for those who keep the faith.

Day 1: June 10, 2016 (actual Facebook post)

Prayers needed please! Our sweet little Stella suffered a severe seizure yesterday lasting over 2 hours and was finally stabilized late last night at Vanderbilt. She’s still on the ventilator in an induced comma as she also incurred aspiration pneumonia during the seizure. They’re working around the clock with meds to get her lungs healthy enough to breathe fully on their own. We’ve been assured she shouldn’t suffer long term effects and know we’re in good hands.

We’re extremely blessed and a miracle in itself that Brooke was sitting beside Stella when it happened and didn’t panic – she’s always amazing in intensely stressful situations. Also extremely thankful I was almost home and able to be there although I will never forgot the image of my sweet baby laying there lifeless on our floor with EMTs working frantically to stabilize her. As a parent you’d do anything to prevent one ounce of suffering by your kids but you do trust God’s will and mercy heals all pain. Thanks in advance for your prayers. Little Stella is a fighter and we know she’ll bounce back.

Stayed tuned for the next 9 days of being Thankful!!!

ABOUT SHAY

Shay is an All American and World ranked triathlete, burn survivor with scars over 65% of his body and is a sought out national motivational speaker. Despite being told he’d never compete in sports again at the age of 8, Shay is living testament to “Anything is Possible”: 4x Ironman, 4x member of Team USA, ranked top 1% of Ironmen worldwide and has competed in 9 triathlon world championships, including the Ironman World Championships in Kona, Hawaii. His mantra has always been to not merely be a “finisher” but to be a “competitor.” If you enjoyed this article, I encourage you to check out my other posts.

Day 10: Going home…living a Thankful life everyday! Watching our 2yr old win the fight for her life.

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Day 10: Stella Update (actual Facebook post)

We thought this day would never come – Stella going home! Her caregivers have mentioned since Saturday the possibility of us going home today but we knew the pitfalls of getting our hopes up. It seems every day something popped up that warranted an extra day of observation – retaining too much fluids, getting handle on withdrawal, not urinating, body tremors, fever, high blood pressure, etc… Today was no exception. The Doctor this morning told me she’d like to watch Stella for another day or so to make sure she’s ok. Put off by having to wait yet another day despite everyone saying she looked a lot better, I asked “what does she need to accomplish to go home?” (Please understand I would never compromise the health of our children but I do expect reasonable explanations.) I was already leery knowing the conflicting directives we had received the day before (eat/don’t eat, remove feeding tube/don’t remove, take diuretic/don’t take diuretic). I believe I caught the doctor off guard with my direct question – i’ve never been a fan for beating around the bush. Stunned, she paused for a few seconds, then said, “you’re right. She can go home today. I don’t see why she can’t. She’s eating, breathing fine on her own and you’re able to give her all her meds orally…why not. Besides, she’ll probably do better in a comfortable environment.” And just like that we were cleared to go.

The long drive home

The drive home required driving through a stretch of road construction that was about 3 miles. As I was driving I couldn’t help but think the construction was an analogy for our last 10 days. Road Construction is like life in so many ways – no matter how much planning you do to accommodate future growth more changes are always required and you can’t judge the success of the project (road/life) by how it looks half way through completion. As I was driving down the newly laid asphalt I couldn’t help but recall how 6 months prior it was a traffic nightmare – culverts everywhere, construction equipment, temporary driveways for homeowners, etc… Perhaps Stella’s situation was like this road. Perhaps we just completed all the initial infrastructure work and we’re doing the final grading, preparing the surface for the new asphalt. Perhaps in a few months our little Stella will be not just back to normal, but even better. I won’t even speculate on what this could be but the possibilities are very exciting. What if we approached every obstacle, tragedy or roadblock as a growth opportunity. If we did, would we have a different attitude when we encounter life’s challenges? I’m a firm believer everything has a meaning and a purpose. The problem is too many of us are too busy complaining about how unlucky we are to realize just how blessed we are. I’ve seen more than my share of suffering over the last 42 years and realize humans are very resilient and can do amazing things when they have or want to.

Coming home was surreal yet overwhelming. As soon as we stepped out of the van reality set in. We realized we got our wish…we were now officially on our own. No nurse to give correct dosages of meds, no dr down the hall to ask if her breathing was ok and now we had our 4 other kids to contend with. Our 10yr old made a welcome home greeting and had it waiting for us on the front porch. As we starting walking through the front yard our 3 boys came running out in their socks screaming “Stella, Stella.” They were clearly glad to see her. Once we got inside they were all over her, talking to her nonstop, touching her, basically mobbing her like the paparazzi. Strangely enough she didn’t seem to mind although Brooke and I feared a tragic meltdown from sensory meltdown. As the day passed it was apparent Stella had overdone it. She became very irritable and quickly agitated.

Part of our unpacking including mapping out her medication schedule for the next 7 days – including 2 shots in her thigh each day of the blood thinner for the clot in leg for the next 6-12 weeks. The pain meds for the withdrawal require us to set alarms throughout the night to keep the weaning schedule. The medication schedule really makes us thankful this is hopefully not something we have to do forever. Pretty amazing to think there are many parents that do this every day for the rest of their kids childhood. Every time I’m tempted to complain I think of those that would give anything to be in our situation. When it’s all said and done, we’ve had a blessed life grateful for whatever comes our way. Thank you Jesus for answering our prayers and bringing our sweet little Stella home. We know you are just preparing her for bigger things down the road.

November 23, 2016

Fast forward 5 months. Little Stella is no longer on the blood thinner shots and has been seizure free – just a few scares with small fever spikes. Stella slept in our bed for the 1st 3 months while she was on the blood thinners but she is officially back in her big girl bed and sleeping through the night. It also appears the PTSD has subsided. Our first 3 months of follow-up doctor visits were extremely painful as she would scream uncontrollably at the mere site of a doctor, nurse or anyone in scrubs (including her aunt Heather when she came to visit at our home). We still travel with an emergency seizure kit every where we go. The doctors still don’t know what caused the seizure but for now they’re calling it a complex febrile seizure, even though her fever was only 100.1 (they think the rate of the small fever spike could have triggered the seizure).

Moving on, picking up the pieces

As a family we have decided to move on an put the past behind us. We will not live in fear or think we’re just one seizure away from repeating this experience…who can live a productive life like that and what a disservice it would be for our other 4 kids. Instead, we’re focusing on living in the moment and being Thankful for every day we have with our kids. We’re not going to put off the cool vacations thinking they might be better if we wait until their teenagers (went to Yellowstone this summer – best trip ever!). We’re not going to put off visiting friends and family despite always being crazy busy (we will make a conscious effort to spend time with those we care about). What we are going to do is live life to the max, a life of no regrets. For starters, this years Christmas Lights will be over the top (it’s not like every year isn’t but I have already put a few thousand extra out in the yard and got one more 12′ blowup). WE ARE SO THANKFUL this year for all our blessings and pray the way we live our lives is evidence.

To read about Stella’s journey from the beginning, read Day 1: Watching our 2yr old fight for her life… 10 days to be Thankful!

About Shay

Shay is an All American and World ranked triathlete, burn survivor with scars over 65% of his body and is a sought out national motivational speaker. Despite being told he’d never compete in sports again at the age of 8, Shay is living testament to “Anything is Possible”: 4x Ironman, 4x member of Team USA, ranked top 1% of Ironmen worldwide and has competed in 9 triathlon world championships, including the Ironman World Championships in Kona, Hawaii. His mantra has always been to not merely be a “finisher” but to be a “competitor.” If you enjoyed this article, I encourage you to check out his other posts.

Day 9: With suffering comes growth.

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Day 9: June 18, 2016 (actual Facebook post)

Our celebration of Father’s Day today was what Father’s day was meant to be… just kids being with their father. There was no fancy lunch. Instead, Nonna (Brooke’s mom) brought the kids to the hospital and we ate pizza across the street from the hospital while Nonna sat with Stella. There was no getting dressed up in our Sunday best. Instead, Brooke and I wore our daily hospital garb (jeans and t-shirt) and were perfectly accepting of our disheveled look. There was no organized chaos trying to get the kids to pose for pictures. Instead, we were focused on letting the kids interact with Stella to ensure they weren’t overwhelming her. They are always super excited to see her and have a hard time not touching and petting her like a puppy. This Father’s Day was nothing like I or Brooke had planned 2 weeks ago, but we couldn’t have imagined spending the day doing anything different.

 

9 days ago I seriously thought there was a chance this would be the worst Father’s Day ever. I thought it would have the same meaning in our family as 9/11, Pearl Harbor and other days people have lost loved ones –

why does it always seem we lose loved ones close to holidays?

I am eternally thankful that was not the case. It was definitely the most scared I have ever been in my adult life. I say adult life because when I was burned as a kid I think I was protected by my innocence. I really had no clue about the severity of my injury whereas now I fully comprehend what was at risk. As parents, we’d all willingly endure any amount of pain to spare our kids any amount of suffering.

Stella is progressing but we are truly on the world’s tallest roller coaster ride. Just in the last 36 hours we have climbed the summit of Mt Everest and dove to the bottom of the deepest oceans.

We’ve went from watching Stella eat a snicker doodle cookie to being told no food for 24hrs. We’ve went from being told we can take her anywhere in the hospital to being told she might need to be quarantined in the room for 48hrs for a RVP test. We’re elated, confused, hopeful and anxious all at the same time. What we have learned is being an advocate for your child’s health pays off and don’t be afraid to ask questions. We are in no way as smart as her Doctors but we do know little Stella and that counts for something. Ignoring the confusion around Stella’s treatment post PICU, the withdrawal from coming off the pain meds after 7 days is really playing with our minds – especially at nights. As I began typing this update, Stella started shaking/tremoring in the fetal position and her eyes started to twitch. I immediately cut on the lights and started calling her name. Luckily, she looked at me right away and the tremors subdued quickly. Fortunately but unfortunately, Brooke prepared me for this as she had witnessed this unfold several times last night, each time causing concerns as the nurses were wondering if she was having a seizure. Needless to say, I’ll be sleeping next to her bed with one eye open. Perhaps this is our new reality but we’re told this will pass in due time. We can only pray for the best and accept whatever comes our way.

This whole week has really taught me we put way too much effort into “doing something special” for celebration days as opposed to focusing on being in the moment and enjoying the time with loved ones. I’m as guilty as anyone. I always want to do something extra special and make these days memorable. Brooke’s birthday was this past Thursday. I had a few ideas on what to get her and had planned on going shopping at her new favorite store this past mon and tues since I wouldn’t be traveling for work. Needless to say, she had to settle for the Publix birthday cake and adult coloring book (no it’s not what you think) I had actually ordered 2 weeks ago. I felt horrible that on her special day I had no big presents to give her. The feeling of inadequacy quickly vanished when I realized she completely understood and was thankful for the cake and coloring book but more importantly Stella was recovering.

The same thing also happened with my dad for Father’s Day. I called him early this morning to wish him a Happy Father’s Day, but felt horrible I hadn’t sent him a card or anything. My shame was instantly forgotten as we both talked and even just sat there in silence – we were both holding back the tears knowing we both had come very close to losing a child. We didn’t really have to say anything, just “I love you” and “these times will pass.” After my call with dad I couldn’t help but feel a little taller, a little more focused on making the most of every day and never feeling guilty of how things turn out. At the end of the day you can only do your best and those who know and love you will always know you live your life with passion.

Thanks for the continued prayers for sweet Stella. It felt so incredibly awesome to hold her in my arms today and read “Pat the Bunny” nonstop with her saying “again” after each reading until she finally fell asleep. As I put her in her little bed I wanted so badly to lay beside her. Brooke has already prepared me that she’ll be sleeping with us when we get home and there was no argument from me. It’s so hard as parents. We want to hold and protect our children every minute of every day but it’s just not possible. We all know we can’t protect them from every danger in the world nor do we lose that feeling even when they’re all grown up (as every parent keeps telling me). All we can do is just live life and live to the fullest. Eternally grateful for ALL our blessings.

To read about Stella’s journey from the beginning, read Day 1: Watching our 2yr old fight for her life… 10 days to be Thankful!

ABOUT SHAY

Shay is an All American and World ranked triathlete, burn survivor with scars over 65% of his body and is a sought out national motivational speaker. Despite being told he’d never compete in sports again at the age of 8, Shay is living testament to “Anything is Possible”: 4x Ironman, 4x member of Team USA, ranked top 1% of Ironmen worldwide and has competed in 9 triathlon world championships, including the Ironman World Championships in Kona, Hawaii. His mantra has always been to not merely be a “finisher” but to be a “competitor.” If you enjoyed this article, I encourage you to check out my other posts.

Day 8: The end is in sight. Watching our 2yr old fight for her life… 3 days to be Thankful!

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Day 8: June 17, 2016 (actual Facebook post)

Has it really been only 8 days since we walked through the ER door at Vanderbilt Childrens hospital? It feels like 2 months. I haven’t slept in my bed since Jun 9th nor have I had more than 3 hours away from the hospital since then. I’m not complaining nor would I do things differently if given the opportunity. Brooke and I both agreed we needed to be with Stella until she is out of the hospital; she absolutely needs us and we could never live with ourselves if something happened and we weren’t there – ‘not on our watch’ as we like to say.

We have been on the PICU floor longer than any other child surprisingly, witnessing at least 10-15 kids cycle through here while we remained in the same room (3 just in the room next to us). It takes a toll on you mentally to watch them empty out the room and reset it in anticipation for another patient. Sadly, it has started to feel like home here. We know all the nurses, attending doctors, fellows, residents and respiratory therapists. The fellows already know what question I’m going to ask them every morning as they walk us through Stella’s current condition – what is our goal today and how will you measure success? Everybody knows Stella and many have taken a genuine interest in her health. Several of the staff have stopped by her room, even though they’re assigned to another ward or another patient, just to say hello and see how she’s recovering. She’s earned herself a reputation as someone not to bother, she’s easily rattled and no one takes offense. She’s got the fight in her.

However, our residency changed today. Shortly before lunch we were escorted out of PICU and up to the 7th floor. We were thrilled to leave as this was based strictly on her health improving but we knew we’d miss the one on one attention and comradely we’ve built over the last 8 days. I have learned a lot about each one of her nurses and they about me. I would stay up talking with them every night until 4am and then Brooke would take over so I could get some sleep. You really learn a lot about these nurses and I was intrigued to learn why they did what they did and why they chose to focus on children. Surprisingly, there were 2 common themes – kids have much smaller poop to clean up and generally kids are in the hospital because of an accident, not some self inflicted wound like many adults.

Leaving PICU almost bright me to tears. I felt I was saying goodbye to longtime friends. If you think about it, many of them had a serious impact on something that means the world to me – little Stella. Her caregivers watched Stella battle back and they also watched us struggle to accept our new reality. My heart always goes out to healthcare workers as they see patients at their lowest moments in life and very rarely see them once they’ve made a full recovery. Imagine how these nurses and doctors would feel if they could see the long term impact they had on their patients lives. The PICU teams saw us in our most vulnerable state and that is not something I share with many people. It really makes you re-evaluate life in general and question if your daily interactions would be different if you knew everyone’s story. Everyone has a story, some are just better than others at sharing. One of our nurses had 6 kids and we just exchanged kid stories for hours – although none of her kids trimmed her cat with scissors or covered her bedroom wall with Vaseline.

We are slowly adjusting to our new freedom on the 7th floor and excited as it puts us one step closer to going home. We were able to take Stella outside in a wagon this morning and pull her through their little garden. Having her out of the room for just 30min made us acutely aware how much her health had declined. She was exhausted and seemed overwhelmed by all the stimulation. We def have our work cut out but excited we can see the promise land on the horizon. Stella is still battling with withdrawal from being sedated so long but she continues to show improvement. One of the biggest steps she took today was eating solid food. Her first meal was a snicker doodle cookie from #JakesBakes. I tried healthier options and it came down to a cookie or nothing. I ate one with her so she wouldn’t feel too bad about the empty calories.

I can already see Stella’s disposition changing, at least temporarily. She really loves Brooke and I to hold her hand, which I’d do all day every day. I can see us building a unique bond that will unite us even closer. We all have unique experiences with our kids and this one is really special. I still have memories from getting burned as a kid that created a special bond between me and my parents. We love you sweet little Stella and I’m so excited about the woman you’re going to become one day – just hopefully that’s at least 25 years down the road.

To read about Stella’s journey from the beginning, read Day 1: Watching our 2yr old fight for her life… 10 days to be Thankful!

ABOUT SHAY

Shay is an All American and World ranked triathlete, burn survivor with scars over 65% of his body and is a sought out national motivational speaker. Despite being told he’d never compete in sports again at the age of 8, Shay is living testament to “Anything is Possible”: 4x Ironman, 4x member of Team USA, ranked top 1% of Ironmen worldwide and has competed in 9 triathlon world championships, including the Ironman World Championships in Kona, Hawaii. His mantra has always been to not merely be a “finisher” but to be a “competitor.” If you enjoyed this article, I encourage you to check out my other posts.

Day 7: Turning the corner. Watching our 2yr old fight for her life… 4 days to be Thankful!

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In our wildest dreams we would have never thought a normal Friday evening would turn into a fight for our daughter’s life. We would have never dreamed a normal 2 year old, with no medical or family history of seizures, would spend 7 days in PICU on a ventilator. We would have never dreamed recovery from 7 days on a ventilator was just step 1 of a long recovery process, much less that our daughter would suffer from withdrawal due to the heavy sedation and be placed on a methadone recovery program. It is times like these that test our faith and make us question the uncertainty of tragedy and why it exists. Though tested beyond any capacity we hope to never repeat, I can honestly say our resolve has been strengthened and reaffirmed. We do not believe God is trying to punish us or even that He has abandoned us. Rather, we believe it is part of a grander plan to be revealed in due time. We share our journey and hope your faith and thankfulness for all your blessings are reaffirmed this Thanksgiving!

Day 7: June 16, 2016 (actual Facebook post)

At 4am the heavens opened and we were touched by God’s healing hands. Those healing hands took Stella off the ventilator and removed the breathing tube from her throat. Brooke and I were obviously awake as there was no way we’d miss the big event. Now I know how people feel when they win the lottery. We had hit it big. I was already thinking of all the fun things we’d do when she gets home, much like the lottery winners dreamed of sports cars and mansions. I wanted to run and scoop her up in my arms and then the reality of her condition quickly sank in.

She had a look of fear in her eyes and repeatedly kept saying “no” every time one of the caregivers got within 10 feet of her. It was almost comical as she would say “no” even when they weren’t even touching her and just removing pieces of equipment and tangles of hoses. “NO” was the first word we heard her speak for over a week. We couldn’t help but wonder had she been saying “no” repeatedly for the past week and it was just muffled by the breathing tube. After an hour, the magical moment came. I was able to hold her in my arms once again. As hard as I wanted to squeeze her, I was acutely aware of her sensory overload and need to be comforted. I wanted so bad for her to tell me how much she missed us, how scared she was, what was hurting and then it occurred to me she was only 2. But the look in her eyes conveyed everything I needed to know – she was terrified beyond comprehension and wanted nothing more than to be assured it was all over. It wasn’t for several hours later that I would receive the reassurance I had waited for all week – hearing her say “dada.

Little did we know (and it wasn’t that we weren’t told but we rather we had just placed so much emphasis on healing being tied to the removal of the breathing tube) we underestimated just how much more healing Stella needed before we could go home (the lungs were just phase 1). Late last night we started seeing her having body tremors and sweating profusely, the tremoring/body shakes progressing as they continued to wean her off pain meds entirely. The tremors we soon learned were signs of withdrawal due to the large amounts of sedation she received the past week. To add insult to injury, not too long after the breathing tube came out she also had a fever again, immediately triggering thoughts of another febrile seizure. This was even scarier as she could only receive Tylenol (not able to receive ibuprofen due to the blood thinner she was on as a result of the blood clot in her leg). We were informed the fever was another sign of withdrawal and the tipping point for them to officially classify her as suffering from withdrawal. She also suffered severe diarrhea, another lovely sign of withdrawal.

As we starting digesting the treatment process involved with the withdrawal (phase 2), we soon learned of the physical therapy (phase 3) she would need to regain full body functions. We both knew she’d be weak from laying down and under heavy sedation, but had no idea

it would require potentially 7 weeks for her to get back to full strength. Her therapist informed us the rule of thumb is 1 week for every day for hospitalizations such as Stella’s.

It was heart wrenching to watch her incapable of just sitting upright in bed knowing just a week ago she was running through our back yard and climbing the playhouse with her older siblings. We’re not deterred, just another element added to the learning experience. We knew she’d require some time to get back to full strength, but had no clue we were talking 7 weeks. The more time we spend here, the more we realize just how seriously sick Stella really was and how fortunate we were to be at Vanderbilt.

Today was a monumental day and we are so thankful the awful breathing tube was removed. We are so incredibly happy to hear her say “momma” and “dada” and watch her show facial expressions. We even heard her giggle temporarily. One of the more moving moments today was when our other kids came to see her. Our 8yr old son was standing at the foot of her bed and we asked her “who is that Stella?” She quickly replied “Mad”, her nickname for Maddox. Brooke looked at Maddox and noticed him wiping tears from his eyes.

Somewhat embarrassed he was moved to tears, he quickly said “mom, I have something irritating my eye.”

We assured him it was perfectly normal to cry and that daddy was crying too. You’d have to know our son and what a rough houser he is to know how special it was for him to be moved to tears just by his little sis calling his name.

I won’t lie and say the daily regiment here isn’t growing old and tiresome, but we are moved by inner strength (faith) and celebrate the smallest signs of improvement. We know there is an end in near and we will not quit until the task is done. Our hearts go out to those who have similar struggles but don’t have the same assurance their kid will ever get better. We are truly blessed and so thankful for all the prayers. Little Stella is the luckiest girl in Nashville to have so many cheering for her recovery. Her little smile wipes away the sleepless nights and countless setbacks. Little did we know the significance of her name when we chose it 2 years ago “Stella Maris” – “star of the sea”, Biblical reference to Mary. Coincidence? I think not.

To read about Stella’s journey from the beginning, read Day 1: Watching our 2yr old fight for her life… 10 days to be Thankful!

ABOUT SHAY

Shay is an All American and World ranked triathlete, burn survivor with scars over 65% of his body and is a sought out national motivational speaker. Despite being told he’d never compete in sports again at the age of 8, Shay is living testament to “Anything is Possible”: 4x Ironman, 4x member of Team USA, ranked top 1% of Ironmen worldwide and has competed in 9 triathlon world championships, including the Ironman World Championships in Kona, Hawaii. His mantra has always been to not merely be a “finisher” but to be a “competitor.” If you enjoyed this article, I encourage you to check out my other posts.

Day 5: Watching our 2yr old fight for her life… 6 days to be Thankful!

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Day 5: June 14, 2016 (actual Facebook post)

Although there were no big milestones today, she did manage to improve all her ventilator vitals, putting us that much closer to getting her off the breathing machine and that much closer to eventually going home. The more I pressed the docs for the magic numbers to signify she’d be ready to come off the breathing machine, the more I kept realizing I was trying to force a recovery that might eventually sacrifice everything we’re working towards (don’t worry, the docs would never compromise on her health). It’s so true with life.

Instead of savoring the journey, we want to rush to the end.

I once heard a priest say he was most thankful for the ability to suffer as it put him that much closer to God.

As the morning hours gave way to night, I realized today was all about “perspective,” putting focus on what really matters in life – Stella getting better! As much as I’d love for her to be healed by the weekend, it really doesn’t matter how fast Stella heals, just that she heals. We’re not giving up or going to quit just because it may take longer than we could ever imagine. We’re also preparing ourselves that she could easily regress in her recovery due to unforeseen complications.

All day I found myself staring at her innocent little face and that tiny little body. All I can think about is holding her in my arms and squeezing her tightly. I can hear her saying “daddy” and “mommy” in my head even though she hasn’t physically said a word in 5 days. I can also imagine holding her up over my head, looking into those big brown eyes and those eyes fixed back on me, even though we have only seen them open for a few seconds, unable to acknowledge we’re in the room by her side. Sometimes I even think back to the last words she said to me Friday morning before I left for work – it actually wasn’t even words but laughter as I was tickling her as she lay next to Brooke, wondering if I’ll ever hear her laugh again. I assure myself I will not only hear her laugh again but it will be uncontrollable laughter as we roll on the floor and wrestle like I do with her brothers and older sister.

This week is teaching both Brooke and me about patience, letting God unveil his plan for us without us rushing to see what’s at the end.

It’s funny how we all say we trust God’s healing hands but so often we expect that to come with a specific time table which we measure in weeks if not days.

What if His healing period for little Stella is a year, what if it’s 2 years? We will do whatever it takes and just celebrate the fact we have our little Stella. Oh how I miss her so much and know she will think I’m crazy for refusing to let her go. I can’t wait… but I must. Thanks again for all the continued prayers and please know they are working. I also ask for you to pray for others as we are not the only ones with sick loved ones.

To read about Stella’s journey from the beginning, read Day 1: Watching our 2yr old fight for her life… 10 days to be Thankful!

ABOUT SHAY

Shay is an All American and World ranked triathlete, burn survivor with scars over 65% of his body and is a sought out national motivational speaker. Despite being told he’d never compete in sports again at the age of 8, Shay is living testament to “Anything is Possible”: 4x Ironman, 4x member of Team USA, ranked top 1% of Ironmen worldwide and has competed in 9 triathlon world championships, including the Ironman World Championships in Kona, Hawaii. His mantra has always been to not merely be a “finisher” but to be a “competitor.” If you enjoyed this article, I encourage you to check out my other posts.

Day 4: Watching our 2yr old fight for her life… 7 days to be Thankful!

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Day 4: June 13, 2016 (actual Facebook post)

We have settled in and embraced the journey. There is not much to update today and that in itself is progress. She is still on the ventilator and probably will be for a couple more days if things continue trending positive. I think Brooke and I truly believe she will get better and come home; we just have to be patient and let Stella’s body do it’s thing.

Personally, for me today has been a spiritual journey, one that has brought lots of clarity. I took a little run this afternoon to get my thoughts together and get the mental recharge I needed to be a pillar of strength for Stella, Brooke and my other kids. As I took each stride, I began to see what God was trying to teach me. I/We were not in uncharted waters; maybe different from anything we’ve experienced on the surface, but at the core it was not anything we couldn’t handle. We are fighters and we have both had our fair share of hard times over the years. As 1 mile turned into 2 miles I began to feel lighter. It was as if each breath I took was a breath for Stella. I continued running with the conviction that each breath was somehow pumping life into my little Stella.

It was somewhere between mile 3 and 4 that I was able to put our situation into terms I could understand. A war had been waged on my family June 10th at 4:20pm. Without any provocation, something tried to take my little Stella from us. That something thought it could shake our faith and convince us to surrender. Like most battles, we suffered some bruises, body piercing lacerations and even lost some body parts. A piece of my heart is still on our floor where the EMT was trying to stop her seizures. That part of my heart has been hardened but it continues to beat with even more sensitivity to love for my kids. We may be battered but not deterred. We stood our ground and prevented the siege on our family. We did not surrender nor will we ever.

The initial battle has passed and our wounds are beginning to heal. Like most wars, coming to terms with the initial shock is half the battle. We now know what we’re in for and are fully prepared to take it head on – whatever it may be we are fully accepting of our fate. Moments like these may scare some but it only makes me even more thankful for all the blessings in my life. A question worth asking is does adversity make you thankful, does it make you regretful or does it just make you bitter. I can honestly say I never dreamed of a life this rewarding and fulfilling when I was a kid. I never thought I’d have the opportunity to find someone to love and share my life with – much less someone who would give me not 1 but 5 amazing kids. I just wish every parent knew how lucky they are to have kids. If they did, would they live their life a little different? As parents, do we live our lives so that our kids are as proud to call us their parents as we are to call them our kids? Right or wrong I try to assess my life on whether I can rest easy knowing I did everything to make life better for my kids. Did I do everything I could to prepare them for the real world. My goal is never to remove the pains in their life but rather to teach them that everything worth having in life requires sacrifice and commitment.

When we started our journey as parents, I could never wrap my head around loving a 2nd child as much as you love your first, much less loving all 5 equally in their own ways. But by the grace of God, with each kid my heart is filled with new love, an unwavering source of love that knows no boundaries or limitations. It’s hard to believe you could love something so much. As my run came to an end, I became confident we’re going to win this war. We may lose a few battles along the way, but we’re going to continue fighting and win the war. I am thankful for all the continued prayers and I know God has a special plan for little Stella.

To read about Stella’s journey from the beginning, read Day 1: Watching our 2yr old fight for her life… 10 days to be Thankful!

ABOUT SHAY

Shay is an All American and World ranked triathlete, burn survivor with scars over 65% of his body and is a sought out national motivational speaker. Despite being told he’d never compete in sports again at the age of 8, Shay is living testament to “Anything is Possible”: 4x Ironman, 4x member of Team USA, ranked top 1% of Ironmen worldwide and has competed in 9 triathlon world championships, including the Ironman World Championships in Kona, Hawaii. His mantra has always been to not merely be a “finisher” but to be a “competitor.” If you enjoyed this article, I encourage you to check out my other posts.

Day 3: Watching our 2yr old fight for her life… 8 days to be Thankful!

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One of the hardest things as a parent is being strong for your kids when everything inside you just wants to breakdown and cry.

Nothing we learned in school or at work prepared us for staring into the eyes of our other 4 kids and assuring them without hesitation that everything will be ok. As parents, we always want to be open and honest with our kids, but we also don’t want to prematurely rob them of their innocence by exposing them to the harsh realities of life. Pain exists. It is a very real emotion and is a great teacher. I tell myself daily our biggest struggles in life are preparing us for our greatest blessings…we just have to keep the faith and continue pushing forward when everything around us suggests quitting. I share with you Day 3 of our suffering and its reminder that we truly have much to be thankful for this holiday season.

Day 3: June 12, 2016 (actual Facebook post)

Today was much better than yesterday. We are now focused on small wins and excited to see some regression of the previous day’s trauma. Little Stella is off BP meds but is now on heparin to combat the blood clot she sustained in her right leg after getting a central line – necessary evil to combat all the issues Sunday. The other 4 siblings were able to visit little Stella today. The staff provided great education to them on her condition to minimize the shock but I think it was still a lot for them to take in. I’ll never forget our 8yr old asking Brooke if Stella will ever come home. We know they’ve had lots of questions and seeing her did help.

I just don’t think it’s natural for kids to understand sometimes things get worse before they get better.

I reminded them of my old burn photos and of their previous hospitalizations. Luckily I was able to slip away for a little while and take them out for some ice cream. Hopefully these little distractions remind them Brooke and I love them very much and dearly want to be back home with them and little sis.

I think we’re hopefully on the upside but we now realize this is probably a longer path to recovery than originally anticipated. We are steadfast in our commitment to do whatever it takes and still thankful for our blessings. We are continuously amazed by the support of friends and loved ones and it does help ease the pain.

The nurses gave Stella a mani and pedi last night. The little things bring lots of hope that our little angel will be back in our arms soon. Hug your little ones extra long tonight. I am thankful we never take our blessings for granted and truly savor every minute with our kids.

To read about Stella’s journey from the beginning, read Day 1: Watching our 2yr old fight for her life… 10 days to be Thankful!

ABOUT SHAY

Shay is an All American and World ranked triathlete, burn survivor with scars over 65% of his body and is a sought out national motivational speaker. Despite being told he’d never compete in sports again at the age of 8, Shay is living testament to “Anything is Possible”: 4x Ironman, 4x member of Team USA, ranked top 1% of Ironmen worldwide and has competed in 9 triathlon world championships, including the Ironman World Championships in Kona, Hawaii. His mantra has always been to not merely be a “finisher” but to be a “competitor.” If you enjoyed this article, I encourage you to check out my other posts.