People often live life quietly. They’re born, go to school, grow up, have their fun, make their mistakes, have their struggles, get married, have a career, make more mistakes, retire, and call it a day. A rare few, however, live life unbelievably. They shine bright. They don’t do anything small.
Some may think it a bit much to say this about a 5 year old, but this is Ari. He doesn’t just shine, he sparkles. Wherever he goes, he lifts up everyone around him.
For the last 188 days, confined to the halls of Boston Children’s Hospital, he hasn’t gone far. Yet, at the same time, he’s lived a life far more rich and full than many of us ever will. He’s been on over 50 medications, had upwards of 10 operations including one open heart transplant, and one emergency surgery to place him on life support.
When he arrested on March 22 we had no idea if Ari would come back to us at all. And, if he did, whether our little boy would still be anything near the same. Against all odds, he did. He’s here.
A few days ago we were talking about basketball off season. I said maybe the Celtics would make a big trade and get someone like Blake Griffin (not that I want him), and could sign a free agent like Gordon Hayward. He said he thinks the Celtics will sign LeBron. I said I’d guess LeBron would play another year for the Cavs, and then probably go to LA.
He said, “Well, different people, different opinions.”
Now that he’s up on his feet he’s back to playing baseball. And golf. And hockey. And hoops. And any sport you can think of not called soccer. Soccer is a no go with Ari.
Tomorrow, which Ari has renamed “FriYay!”should the stars continue to align, he’ll be able to do all of these things at home. 189 days inpatient. 314 days since he was listed for a heart transplant. 2,073 days since his first heart surgery before he was born.
He still has huge hills to climb. We’ll go home on 21(!) medications, not counting the IV infusions he’ll need every two weeks, and the oxygen he’ll be on either full or part time for a while. We’ll be back on Monday for a cardiac catheterization and biopsy, hopefully heading home shortly thereafter.
This weekend, however, we’ll be doing it all at the Sudbury Home (a.k.a. our rental house). Maybe he’ll actually sleep, too. Our window at the hospital faces east. He wakes up every morning around 5 and says, “Dad, it’s morning time. Can we order breakfast yet?”
He doesn’t mind waking me up, but don’t wake him up. A few days ago he was Skyping with Lexi in the afternoon, said he was tired, and had to go. She said, “I’ll call you back when you are sleeping.”
To which he replied, “You better not! I’ll wake up in such a fuss.”
But, you know, don’t worry about waking us up at 5 or anything, Ari.
Visitors will be strictly limited for some time as his immune system is still extremely suppressed. He’ll wear a mask for months in public.
Meanwhile, it looks like a Red Sox game this season at Fenway is a good possibility.
It’s been the great privilege of my life to live at the hospital with Ari for the last 6 months. (Now more than 400 days all in.) I can’t exactly say it’s been a happy time, but as Emerson said, “The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.”
Years ago I don’t think I’d have suspected I’d say this about living at the hospital with an extremely medically fragile child, but that’s how it panned out. I wouldn’t change a thing. And he’s the one that makes the difference. Through it all, he’s lived and lived well.
From here forward, Ari, along with a little person who gave Ari the gift of life, will have a chance to live well like the rest of us. Go to school, grow up, have fun, make mistakes, have struggles and so on.
I don’t know what any of that will be, and I don’t know for how long. I am, however, certainly looking forward finding out, and am forever grateful for every day of sparkle and shine yet to come.
Echo of Hope 
What a precious, amazing, special soul. His light will shine forever, in this life and the next. Infinite shine. Godspeed, little one. Thanks for teaching people how to be better, how to live big and be present and appreciate each moment. Love and light to you always. ❤
Wonderful news – I’ve been keeping an eye on you Ari and I’m thrilled to hear of your recovery.. best whishes to you and hope you’ll give soccer a chance one day.
Erna Dis from Iceland (where Santa lives)
My heart sings with joy for your family. Congratulations Ari, it’s almsot FriYay! You are such a brave boy, I admire you so much! I have known of your family for maybe ten minutes through the internet and I already feel like I’ve known you forever. You are so true about how Ari shines bright, I can feel his youthful, vibrant energy from Oregon. This video brought me to tears. Not to sad tears, but to ugly happy tears from seeing his perserverance, innocence, and genuine happiness in his smile and eyes. I love Ari’s smile! I read that Ari was invited to Fenway park to watch a baseball game! If so, I am excited for him!! Thank you for posting this wonderful video.
Yo lil homie. I came across your story on Yahoo News which led me to your echo of hope page. Its not often that I can say that someone who is roughly 30 years younger than me is an inspiration, hero and role model to me, but thats exactly what you are. I am currently waiting for a new heart myself while in the mean time I have an LVAD to keep me going. I know the hardships that you have gone through and how serious the situation is. I know that being in the hospital for an extended amount of time is just horrible. One of the times I was in the hospital I wanted to go outside just to get some fresh air, but my doctors wouldn’t allow it. I then replied to my docs saying, “even prisoners in solitary confinement get an hour in the yard.” That is why it makes me happy to hear that you were able to go home. I don’t know if you believe in God, but he believes in you and has kept you alive for a reason. One thing that has helped me through all my years of medical problems (I was diagnosed with cancer when I was 16 months old and all the chemo and radiation led to me later in life needing a heart transplant) is to look for the good things in bad situations and be grateful for those good things. You will be in my and mine families prayers. Stay strong lil man. You can make it out of the storm.
Dylan
Wonderful news and thank you for keeping us updated, Mike. Ari shows what the power of love and prayer can bring. Bless your family from Langley, BC
It was wonderful to see you guys on the news tonight. Been following your story. My best friend lost her daugther to suicide 2 1/2 years ago. Marissa saved 6 lives along with helping 14 others with tissue donation. It made my heart so happy to know that Ari is doing better.
My friend Kellye spent the weekend with Marissa’s liver recipient and his family as one of his daugthers got married. When Marissa passed he was dying with only 2 days to 2 weeks to live. This weekend he was around to walk the first of his daughters down the aisle.
I noticed in your above post that you mentioned Ari’s donor. Your entire story warms my heart. I know the donor’s family and friends are so happy that all of you are putting on such a valiant fight. For in Ari, that little one’s life and legacy live on. Organ Donors and their friends and family are grateful for that on a daily basis whether they have been in touch with their loved ones’ recipients or not.
Keep fighting the good fight. My thoughts, prayers, and good wishes are headed your way every single day. ❤
Mazel-Tov: for Ari’s Special Gift to the Whole Family this Father’s Day!!
Mazel-Tov: for Ari’s Father’s Day Special for the Whole Family…xxooMarge
As a heart recipient family, this beautiful boy brought me to tears. Brings back all the joy we too experienced. God bless you all.
Yay, Ari, so glad you’re going home finally. May God bless you in health and bless your family for all the many struggles you’ve conquered.
Just. Amazing. I am so incredibly happy for Ari and all of you. I”ll be thinking of you today as you move home. Happy. Happy!
You have written so eloquently about such a traumatic experience, Mike. Please take care of yourself, and please give a hug and a fist bump to Ari for us!
So glad to hear you guys are getting out of dodge 😉
With love, light, peace and joy,
Cindy and Sam Long ❤
The things you and your son Ari have done has changed my own life in profound ways. I check this blog almost every day with the hope that you can shed some light on the experiences you’ve had, the condition of your son, the love you and he give to the world. The things you write bring tears to my eyes almost every time I read them (a thing very few can actually do), and the way you write them is deeply insightful, and intelligent. After the months and months I’ve spent alongside your family, although it’s been across a computer monitor and many miles, I feel profoundly connected with your family. Love cannot heal all wounds, but I believe the love that all of ari’s followers give, and the love that you and your wife give, have truly made a difference. Fight this illness, fight the odds, fight your fears and doubts and no matter what, fight with love, not hate.
So happy to hear this Ari!! I have been praying for you… Jesus loves you! God bless you and your family!! You will continue to be in my prayers…
Thank God for FRI-YAH! I have tears of joy pouring down my cheeks! What a sweet, loving & smart “Little Man” you have there. May God continue to Bless your family, especially ARI & I will continue to keep him in my prayers. ❤❤❤❤❤❤❤❤❤🙏🙏🙏
So happy for you. What a remarkable family you have.
Such good news! So happy for Ari and his family!! I keep you in my daily prayers, Ari, and I will continue to do so. God Bless you!! 🙂
This post brought my husband and me to tears! Ari, congratulations on how amazing you are doing! I can’t wait to read about all your adventures at home ESPECIALLY A RED SOX GAME!!! Good luck handsome, brave boy!! Well wishes and hugs to you all from Poughkeepsie, NY!
Thank you for continuing to share your amazing story I will continue to pray for all
He shows us how bright a life can be, love
This is wonderful news! Thank you so much for continuing to share this amazing story. Ari is such an inspiration!
Such fantastic news! Ari is such an inspiration to so many. Thank you for sharing his story with the world!!
I am so happy to hear the wonderful news. It has literally brought me to tears. I first heard about Ari and his amazing family through my brother and sister in law, Mike and Janet McCarthy. Since then I have followed you through it all by reading your blog about Ari’s journey. He is indeed a special young man. I can tell even though I haven’t met him. By your words, Ari and your family have come to life for me. And all I can do is send you my best wishes, prayers, and congratulations on bringing your boy home. I wish you all well, and look forward to reading more about Ari’s progress. May God bless you all.
I am very, very happy for you and for Ari to be going home.
I agree that Ari does have a rare and special sparkle and he has it in spades.
I think of him and his wonderful family everyday.I am so thrilled that he is going
home. Best of Luck!!!
Thank you for sharing your story and a little bit of Ari with all of us! No doubt he will continue to beat the odds on his road to recovery and inspire a lot of people along the way. Wishing you nothing but sparkle and shine in the days to come. God’s blessings to Ari and the whole family.
What a remarkable day! A day that will forever be remembered in our hearts and minds as it finds a place in nightly constellation between the sun and moon as it radiates with the glow of our brighest star. Ari has showed us the very best qualities in a human being as has his incredible mother and father, his suporting family, the wisdom of his medical team, and all of his compassionate supporters across the country. Soon Ari will be back in the heart of the starting lineup as he circles the bases and crosses home plate.
God bless you folks. We’re so happy for you.
Prayed for him everyday. This note made my day. So happy for your whole family! Hope he continues to get better and thrive.
This news just made my day!! And your writings are just beautiful. It sounds like Ari takes after you, in the way he finds the good in everything. That is truly a gift. May God bless you all during this transition back home.
Be Still my heart, Mike!!!!!!!!! What glorious news. I know there is still the old and now a new fight to fight. Oh and I so wish Ari were going home for real!!!!!
I am over joyed with this wonderful news!!!
his always on my mind. I always pray that one day he will be home and will do his sports. this little guy really amaze me! keep on praying Ari and always thank God for everything. praying that everything will be fine please take care of Ari always. so grateful also to his parents that they never give up for their child. Kudos for Shultz family…
Oh my God Mike, Erica, and the rest of the family, I don’t even know what to say. I’m literally crying. Crying for so many reasons. Ari has done it. He’s beat the odds. He’s come back, and not only a little, but in FULL FORCE. I’ve never met that little miracle, but I feel like I’ve watched him grow. You all have millions praying for you and I truly believe that the power of hope and prayer makes this happen. You have all stayed strong. Even when things looked like things weren’t so good, you ALL told life that you’d make it through…. and YOU HAVE!!! It will be different, you may be exhausted, you may be frustrated, but know this- you ALL are amazingly strong and EVERYONE is here for you. We are your fans…. more than what Fenway can hold- we are all here for you. Thank you for the constant updates. I think of you all daily and I am so grateful that tomorrow is the day we all have been praying for.
With much love, Ginny Perron
p.s. I CANNOT WAIT to see Ari at Fenway! It’s my favorite place on earth!
Batter up!
Exciting and a little scary, huge relief to just be out and together.
Continued good thoughts from another family with a heart warrior
Thank you for continuing to share Ari’s story with us. I have learned much from reading ypur words and seeing such inspiring photos of your son. I have three sons of my own who are all grown and I was a kindergarten teacher so I am quite familiar with the personalities of little boys and Ari is indeed very very special!
Congratulations, Ari and the whole Schultz clan. Going home is a challenge but a blessing. An opportunity to resume whatever the new normal will be. Ari is such an inspiration to so many; thank you for sharing your stories. Doug Lake
Such WONDERFUL news!!! 🙂 So happy for all of you.
With happy tears in my eyes I wish your family a lifetime of health and happiness.
🙂 Thank You Lord! I am so happy to hear this fantastic news, just made my day. Ari is a real life hero and an inspiration to all. Thank you for keeping us updated through out this journey you have been on. You are in our hearts and prayers and Ari you keep on sparkling, your light is beautiful.
From a Dad to another who is also living with my 6 year old daughter and still is for the last 6 months+ and waiting for a heart transplant – I can say I feel you brother, and couldn’t be happier Ari is going home, and I understand the uncertain roads ahead. But i take strength from your writing. God bless, have a blast tomorrow!!
You have an amazing son, there. I’m so happy to hear he can come home. I hope you ALL have a great summer, together. Hugs from across the lake!
I am SO happy for your family. I am crying my eyes out watching your superhero just be a little boy! Our daughter was at children’s for 3 months and at one point we also didn’t know if we’d be able to bring her home – she turned 4 yesterday 😄
From our family to yours, congrats. Tomorrow will be one of the best days of your life.
Incredible report. Best of luck on the move home. From here on out I will be calling Friday “FriYAY!” in Ari’s honor.
Such joyous news. So happy for your family.
Best new this year! So happy for you!
Hooray for Ari!! He is always in my prayers. Just look at what the power of prayer can do! Shine brightly, little Ari.
I’m so happy for you guys. God bless your hearts and I’m praying for you. Love you Ari!
Such great news! Thank you for continuing to inspire us with Ari’s story!