Home Away from Home
Our little air b and b apartment in New York City felt like a gift from God. And really it was. We had a few things we were specifically looking for. Three bedrooms to accommodate our family. No stairs because Liam wouldn’t be able to navigate them for awhile. A laundry in the apartment because there is no way I was going to have time to go to a laundromat. And reasonably close proximity to the hospital.
We searched and searched and searched and in the end, only this apartment met all our requirements. NYC is an incredibly expensive place to live, particularly the area near the hospital. The apartment was significantly reduced because of covid and even so, it was five times our mortgage payment. But God had already taken care of that and between donations from friends and strangers and a few fundraisers that was a non issue. If you’ve ever wondered what you can do for a family who has cancer, send them cash. People have blessed us so much. In a life that is filled with crushing things, it is an enormous gift to know that whether it’s an apartment that costs thousands to rent or the eighty dollars worth of mepilex for two dressing changes, takeout for dinner or the hundred dollar walker, God’s already provided through His people.
But the apartment had a few sweet surprises. Two of the bedrooms had queen size beds and the room with a mountain mural that was perfect for the boys had two twins. There is no way Liam would have tolerated sleeping with someone. I couldn’t even sit on the bed to watch a movie with him anymore because any movement or shifting caused him so much pain.
It also had huge windows, plenty of closets, and was located on a relatively quiet street. Relative because when you’re accustomed to the country, the entire city is loud.
It was so sweet to be together again! Our church family and someone who follows his update page on facebook had sent gifts along. It was a treat to be together for Christmas Day even if nothing about the entire month felt very much like Christmas. I know that there were many, many families who didn’t celebrate Christmas together this year because of Covid, but my heart breaks especially much for the families who wondered if they would ever get to celebrate another Christmas with all their loved ones.
Liam struggled a lot with pain. It’s so much harder to do life at home than at the hospital. You have to walk to the bathroom every single time and it’s a further walk. The bed doesn’t lift and reposition for you. It’s just different.
It’s harder as a mom, too. There are no nurses to answer call bells at night if you’re exhausted and sleeping. No nurses to do bandage changes and no surgeons to reassure you that the wound looks normal for this stage of healing. It’s all a big worry guessing game.
We tried hard to get him out the door once a day on a walk for fresh air and mental health although the mental health may have been more about me than him. He loved getting out, but the next day was always so much more painful.
About five days after we were home we walked to Central Park. He rode in his wheelchair until we got there and then took off on his crutches. It is so hard to know when to let him go and when to slow him down. I love his spirit; but goodness, he needs to let his body recover a bit instead of setting himself back.