Boston

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Yawkey Family Inn
New Friends
A child named John William
Elevator/stair races (he always rode the elevator)
A harpist in the living room
Games with prizes
A package from scout friends
Free tickets to the aquarium
A beautiful neighborhood
A special dinner with an old friend- at a very expensive restaurant- Gabe got crab legs
Meals brought in by community groups
Movies galore- he made me watch National Treasure- can’t stand Nick Cage
Walks between the house and hospital- on good days and bad
A bulldog named Pip to encourage Gabe to take walks after surgery
A walk to get ice cream with our truncus friend, Ryan
Facetime with the brothers, and then with Doug when he went home
Meal delivery so I didn’t have to drag Gabe out every evening
Priceless one on one time with my oldest child

I don’t think that’s really a poem. I don’t intend it to be. More like a list of the things I remember from our Stay at the Yawkey Family Inn. When we brought Gabe to Boston, the Ronald McDonald House was not open to heart families- only oncology families. So BCH had housing for families of children with other illnesses. On our second trip there we got a room at the Yawkey Family Inn. Further than the other housing option, but still walkable and an absolutely beautiful old house.

We arrived on June 4, 2014 and got our room. I think it was on the third floor- a queen bed and a roll away bed. Each floor had shared bathrooms. It felt like a cozy dorm. Gabe LOVED it there. We met John William, who is a fellow heart warrior with an amazing story- an in utero surgery to help make his heart defect be much less severe. He was small and adored Gabe. Gabe pretended not to like the attention but I know he did. JW is still doing extremely well.

June 5 and 6 were pre op days, and were blessed to have a full weekend before surgery. We did lots of things in those two days- visited the aquarium, met with several other children (and an adult) with Truncus, and went on a duck boat tour. Probably the best part was having that home to go back to at the end of each day.

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After surgery it was a nice respite to walk back and get out of the hospital for a bit, and do necessary things like laundry (because laundry doesn’t stop just because your child is sick). We took turns sleeping at the house and the hospital. After a few days Gabe was discharged, and the house had a wheelchair for him to use so we could still explore the neighborhood but he could rest if he needed to. At some point Doug flew back home to care for the boys and also get back to work. Gabe and I stayed several more days so he could be cleared by their own cardiologists before flying home.

 

I know that trip was one of the highlights of Gabe’s life. Not the surgery part. I’m sure he would have been just fine doing this trip without the surgery. But the time he got to spend with us. He loved it so much there- the hospital especially- that he often talked about wanting to be a doctor there. We chose Boston because they were the best. His surgeon was one of the top in the world and we knew that if any surprises happened they would be able to handle it. Being able to stay in that house made it possible for Gabe to get an unbelievable level of care.

I’m pretty sure we all thought there would be more trips to Boston. We never imagined that would be the last one. He would have wanted to continue his care there and we would have done everything possible to make it happen. But heart kids, with their repaired hearts, are not guaranteed tomorrow. None of us are but their future is definitely not guaranteed.

So here we are, keeping these memories. I write them down so I don’t forget. I know there is so much I will never forget. But life is different. Our home is different. Church is different. Celebrations are different. But the memories? They are the same. So I’ll hold onto those as long as I live and I’ll always remember that trip to Boston.

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Author: griefmom

I am a mom to 3 wonderful boys- 2 on earth and one in heaven. I work for a local hospital helping people learn how to be healthier and access resources. I'm Catholic and have faith that I will one day see my son in heaven. This blog is about my journey- as I figure out who I am in the face of an unimaginable loss. Life is difficult but beauty can be found after the struggles.

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