Tag: Heart Defects

Growth

The wound is the place where the light enters you
-Rumi

Lately when I hear a quote I like it just stays in my head, allowing me to meditate and ponder the meaning. I’m not sure if this is a good thing or not, but anything goes with grief so I’ll just go with it. I heard this quote in the movie “A Wrinkle in Time”, which we were watching as a family last night. 

I think being wounded can be a gift. Now anyone reading this who is new in grief probably wants to throw something at the computer for that last sentence. A gift?! Being wounded is a GIFT?! And maybe it’s not the actual being wounded part that is the gift (I won’t ever see Gabe’s death as a gift), but the things that come from it can be.  Gift may even be the wrong word. Catalyst is probably more appropriate. Being wounded is a catalyst, and that catalyst can bring some good things. Over time light enters through that wound and encourages change and growth. 

Sometimes I think we need to go through something difficult in order to reach our full potential. A shift deep inside that changes our perspective and helps us develop skills to see the world in different ways. We develop different ways of interacting with people, different interests, and even different goals. Eventually you can ponder that wound that has hurt you so deeply and make something good. 

That horrible, ugly wound can start a beautiful process- but only if you let it. Only if you let it. And letting that process happen is not easy. It would be far easier to let that sadness take over and stay that way forever. It would be much easier to look at that wound and allow it to stay the same. But for me that’s not an option. 

So I will continue to allow the light in, a little bit at a time. I will continue to develop those skills and goals and see where those things will take me. I’ll continue to feel sadness as that wound heals, but also learn to respect that wound for the catalyst that it has been and will continue to be for me. This wound, the death of my child, will shape the rest of my life but it doesn’t have to take it over. His death was not a good thing, but the changes that come to me from it can be. 

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**I wasn’t really sure where to fit this in, but it’s a good illustration of what I said above. When Gabe had his last surgery he was sick. His testing looked pretty good but he was tired. He would rest his head on his hand at the dinner table, lay down on the floor or couch whenever he could, and didn’t have the energy for endless bike rides. To make him better he had to have surgery again. He had to be wounded. It was difficult. I remember those days in Boston at the hospital. I remember the weeks at home where he just wasn’t himself. But within about 6 weeks he had super human strength and energy (or so he thought!). Enough energy for a significant bike crash 7 weeks post op. I’m pretty sure the thought he could conquer the world. He grew physically and emotionally after that surgery. It was a very difficult process for him but it was needed. That huge wound on his chest allowed the light in for him.**

Healing of the Heart

Where to begin? Sometimes the words just don’t come, and this is one of those times. I’ve been thinking about how to start this in a special way, but I guess there is really no special way. This weekend I had the incredible privilege of going on a retreat. This retreat, however, was different from most retreats. This retreat was exclusively for a very special group of moms. Every mom there had lost a child to Congenital Heart Disease. This retreat was started in memory of a sweet baby named Hayden Jeter Dorsett. His mom started Hayden’s Heart (http://www.haydensheart.org/) as a way to honor his memory and reach out to cardiac and angel families.

I know as the days come I will process more but for now the most important thing that stands out is the beauty that was there. Beauty in these moms who continue to go on without their babies. Beauty in the stories of the babies, fighting for life from before they were even born. Each mom there loves her baby (or child, or teen) no matter how long they have been gone. Some of us were so lucky to have years. Some didn’t even have hours. There were so many differences in our stories- in our backgrounds, ages, families, experiences, and the conditions our children have. But the one thing that tied us together- the death of our children-  is far more important than all of those differences. That one thing is so horribly sad and creates a very strong bond. There is unbelievable power in being in one room with so many other women who know. They know what it’s like to hear that their child is sick and needs surgery. They know what it’s like to have to worry if their child will make it. They know what it’s like to see things that no one would ever want to see. And they know what it’s like to have to continue to carry on without their child.

This retreat was a gift to each one of us. The picture above is from our art therapy session. We were each given the same materials and the same instructions, yet each painting tuned out so differently. I think this is much like our journeys. We were each given the worst thing that can happen. The deaths of our children. And each of us will continue to carry on and live in different ways. We will make something beautiful out of this sad thing we have been given, but for each of us the results will be different. I’m thankful to know these women and look forward to staying in touch and seeing where each of our journeys takes us.

 

***Ady, Hayden’s mom, has a dream to create a house specifically for families who have lost a child. Information can be found here if you would like to make a donation to this mission of Hayden’s Heart:
https://www.classy.org/campaign/building-haydens-house-one-family-at-a-time/c129159

If you would like to donate to Hayden’s Heart to support the organization please click here:
http://www.haydensheart.org/donate.html

 

 

 

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
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 Gabe’s dad 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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