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.
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.
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.
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.
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.
If you’re so inclined, please help us build a new house by contributing to our Youcaring fundraising site. Unlike other crowdfunding sites, Youcaring does not collect a fee.
(The Greg Hill Foundation is a certified 501c3 charitable organization. All funds will go directly to the family with no fees, including no credit card fees. Donation tax deductible. Prefer to mail a donation? Make out to Erica Schultz. Mail to: Linda Stritch, P.O. Box 1567, Wells, ME 04090. Prefer GoFundMe, click here.)
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.
We have an amazing General Contractor who is donating his time. Same for our lawyer. Here’s what we could still use donated:
- Architect / designer to put together plans for our house
- Demolition and removal
- Concrete / foundation contractor
- Construction dumpsters and waste
- Lumber and materials
- Electrical contractor
- Plumbing contractor
- HVAC and materials
- Windows and doors (millwork)
- Plaster and dry wall contractor
- Fireplace materials (stove)
- Flooring contractor
- Roofing contractor
- Painting contractor
- Landscaping contractor
- Shed for storing everything we own
- Off-site storage
- House rental in the area for all of us while we build
If you can donate these services, or if you have someone who will donate them, please contact Dan James at firstname.lastname@example.org or 781-844-5688. Or help here through Youcaring.