Since the beginning, we’ve told Ari we don’t know how long we’ll be at Boston Children’s Hospital. Late last week he was looking pretty good. I was feeling pretty bold. Started talking about home.
I said to him, “I think it’ll be nice out when we go home. What do you want to do?” Answer: baseball…and golf! He’s the only 4-year-old that I know that has played 18 holes at a championship course while in congestive heart failure.
Ari golfing at Ari’s Tournament to benefit the Ethan M. Lindberg Foundation. Backpack delivers IV medication.
I can’t stop thinking about how much I want him to come home. How much I want to play golf with him.
Unfortunately, we have been hit with very bad news on two fronts:
- Ari is being treated for acute rejection
- We learned on Friday we have to tear our house down and build a new one from scratch
Ari is struggling mightily. He went downhill and needed operations and procedures every day this week. On the day of procedures kids can’t eat. Ari had his food and water taken away every day.
The pokes and sticks were relentless. The rejection treatment, which takes a while, is horribly uncomfortable.
Home just got a little further away. For all of us.
Ari, Lexi, Eli, Erica, and Mike 2 days before the transplant in the hospital’s elevator bank on the cardiac floor
Well, when it rains, it pours. When it pours, little did we know, mold was growing in the walls, floors, and ceilings of our house. Just found out. At first we thought we’d remediate the mold, fix the leaks, and put the house back together. Turns out it’s not that simple.
It started when I saw mushrooms behind a switch plate
Last week when we pulled out the mold, we discovered catastrophic problems behind the walls.
After meeting with a structural engineer and our contractor at the house on Friday, we now believe we would need to tear out about a 1/3 of the house for repairs, and even then we believe that won’t be enough to fix it. Our house was built on a lake in 1938, and added on to over the years by a bunch of wannabe contractors and their buddies. All before building codes, and, as we’ve learned, without much building smarts.
Our contractor called it a “sick house.”
Anyone who has ripped out 1/3 of an old house knows about the hidden disasters that are behind the rest of the walls. With quite a bit of expert counsel, we’ve decided it’ll be safer and less risky for the family – even if it costs more – to tear the house down and rebuild from scratch. Can’t have hidden mold we never see still in the house when Ari gets home, or take the chance we’ll have to move once he’s settled in.
The TV was here
Our first floor
Kids’ play room
Rotten studs holding up the house
Scary
It’s our understanding that insurance covers mold (that you can find), not the causes of leaks and structural fixes. Which means paying for demolishing our house and building a new one is on us. We get to keep our old mortgage while we raze the house, and then try to build another house from scratch. And this is after, you know, how our year has gone so far.
We feared when we came inpatient 100 days ago today that Ari would never see his room again. Even assuming he turns a very big corner and walks out the front door, he’s not seeing it. Now we’re on to figuring out what room he will see.
Erica has been with him more than I the last few days while I figure out rapid new home building. I hate that I can’t just sit with him. No choice.
Saturday as I walked around in a daze trying to figure out what to do, I bumped into a fellow heart dad and good friend also living at the hospital long-term with his son. We talked about how, when faced with major life challenges, our inclination as men is to bear down, work harder, fix problems, and don’t ask for help.
But we both learned that if we want to help our families now, it’s too heavy a weight to bear alone. Yet it’s still our job to man up and fix the problems. To do that, we need to learn from our sons about being brave, and about what manning up really means.
If manning up means asking for help – the exact opposite of what manning up feels like it should be – then so be it.
Since coming inpatient 100 days ago today, Erica and I were asked quite a bit by friends if they could set up a fund for us. For the first 3 months, we said no. After this house business started, we said yes. Adding the house disaster to living at the hospital for a better part of a year was too much. Even still, last week we thought it was going to be manageable. We were wrong. It got a whole lot worse. 10 times worse.
Still, the only real cares we have are for Ari, Lexi, and Eli. But keeping our focus on Ari, while we also try to navigate what would be a housing disaster by itself in anyone’s life, has overwhelmed us.
What has truly amazed us is the help and support we’ve already received through this process. We’ve seen nothing but the good in people. The kindnesses we’ve been shown are getting us through. We’ve never needed it more.
Someday we’ll be able to express our gratitude properly. For now, our sincerest thank you will have to do as we turn our attention back to Ari, keep the family together, and build a new home for Ari to go to when he wins his terrible battle.
Echo of Hope 
[…] is struggling mightily,” Mike Schultz, Ari’s father, wrote in a blog post. “He went downhill and needed operations and procedures every day this week. On the day of […]
[…] is struggling mightily,” Mike Schultz, Ari’s father, wrote in a blog post. “He went downhill, and needed operations and procedures every day this week. On the day of […]
Are you still looking for an architect? I know someone who can do your drawings for free!
I hope I wrote in my prayer cards who told me about Ari who I have been praying daily for no rejection of heart and total healing for! I will now add all these needs to my daily prayers! so sorry I
have no money to send but daily prayers will be there!
Glenda Kremer
[…] we lost our house to mold at the same time Ari was rejecting his new heart, the support and social media sharing was […]
I am in Southborough, MA Do you still need a place to stay? My husband and I had a prolonged hospital stay with our son of 6 months and we know how difficult it is to live in a hospital. We decided to be available to anyone with similar needs. Please contact me at wbalcom@verizon.net
I would be happy to speak with someone about the family staying in my home for a period of time. I have the room and would be happy to help. Loretta Madden-Holman 603-343-2116
People Magazine shared this story and so hope it reaches a lot of people. Thank you so so much people magazine!!! I am so deeply touched by this story. I hope everyone prays for this beautiful family. This family has been through such unimaginable turmoil that no one person would experience in a lifetime. Beautiful and precious Ari is 5 (five!) years old and has got to be one of the bravest boys I have witnessed. This family is amazing and so inspirational and close to my heart. ❤️🙏🏻❤️🙏🏻 xoxo PS. If I won the lottery tomorrow, first thing I would do is buy them a new house. 😘❤️
Praying for your family in this great time of need!! My family too has been riding the roller coaster of life since my daughter’s very unexpected transplant. I pray that you will receive all the help you need, I pray that you and yours will find peace and comfort in your new home which I can only imagine seems light years away. Remember while your running frantic between the new build Ari and the other kids, to take even just an hour for you and Erica, it is much needed. When the dust settles and everyone is home together, take a deep breaths and realize how far you’ve all come together!! Greatest of luck, best of wishes and prayers!!
I love and miss you baby cousin Ari… The last time I saw you was on Thanksgiving, you were doing so well, but your getting better now, and I can’t wait to see you guys again XOXOXO
Just stay strong for ari please never give up most specially ari wants to be alive for long years I really admire your brave little warrior hope I can donate something…always pray and trust God 🙏😇🙏
What town is this? May be able to help with demolition of house.
I wish I wasn’t on the other coast and could help you out more. My folks are remodeling and I’ve asked them to hold onto anything in good shape and I’ll pay shipping to get it to you. Please let me know what you need and I will petition my Cali friends for whatever we can do to help. All my love to you, Erica and all the kids. Ossu!
Please have faith and hang in there. Prayers and help are on the way💕. Know that you and your family are constantly in our thoughts and prayers.
If there is a local vocational technical high school they might be able to help, particularly with a storage shed. Praying for peace and comfort. My husband and I might even be able to help with construction. He is a licensed contractor.
You’re amazing ♡
In addition to my useless thoughts and prayers I have decided to also send some hugs.
I would like to know when the new construction startes I would like to help out
I am so sorry for your situation. I don’t know exactly where you are, but…in my area people will sometimes buy properties with existing houses that they will give away, because they are going to build a much larger house. You just have to move them. Maybe your contractor friend would know if there is something like this available. It would cost the moving and hook up, etc…but still not as much as building from scratch.
I know a few people who have gone this route and their homes are beautiful period homes with original woodwork and gorgeous staircases. Could definitely be a way to go but it’s best to have a contractor who has worked with moving homes.
Mike and Erica, I am sick to hear this news. I WILL DEFFINITELY CONTRIBUTE WHAT i CAN TO YOUR gfm. yOU REMAIN IN MY HEART AND THOUGHTS. lOVE, mISSY
Oh Mike, I’m so sorry about everything. This is such bad news, I imagine it’s hard, if not impossible, to keep your chin up. I’m praying for you all, and sending much love. Tears on the news about Ari. 😢
I am so sorry! I’m unable to help physically or financially but I will pray for your housing needs, your family for strength, and for Ari and his medical team. We have a CHD warrior-son and I treasure every day of hius 20 yes!
MY thoughts and prayers are with you and your family. I am unable to help financially but my I am prayers are with you. God will get you through it.