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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Roar

This song. The video is kind of…interesting…but I love the message of this song. I love the words. Sometimes in life big things happen. HUGE things happen. Those things change you on a deep level. They change you so much that you feel like a different person. But when you change, you roar. Through those horrible things, somehow, changes happen that make you stronger.

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You see, when your child dies you change. It’s not a maybe you will change, or you might change, but you WILL change. When your child dies a piece of you dies with them. It’s a loss that others can try to understand but the only way to truly know how it feels is to go through it. The pain of it can’t be described or explained. It must be experienced. It’s a pain that you hope to never experience.

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Since Gabe’s death I am different. And one of those pesky little things I can’t control is just how different I am. I’m sure the people I know see difference, and to some the changes may seem bad and some good. To me though they are mostly good.

One of the biggest things that has changed is I care less about what others think of me, because really in the grand scheme of things it just doesn’t matter. My priorities in this new life of mine are my ability to survive and helping those that live under my roof with me survive. My husband and my surviving sons. This ability to not really worry about opinions of others has brought with it a wonderful assertiveness. At first it was kind of uncomfortable, but now it kind of feels good. If there is something I am not comfortable with I say so, or I just don’t do it. If there is something that I know will overextend me I opt to skip it. And if there is a boundary I have set I make sure to enforce it.

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I think those things make me a stronger person, and ultimately will make me a more successful person. I also think those things are probably confusing for some of those around me to see. This change seems kind of drastic. It IS kind of drastic. But the change to MY LIFE was extremely drastic. And sudden. And horrible. And earth shattering. I know that despite what others may think this version of me is here to stay. My child died. I changed. I will be forever different. The old me? She’s gone, and this version of me will ROAR!

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Three Brothers

Three boys. “You sure have your hands full!” I can’t tell you how many times I heard that over the years, especially when they were small. People seem to see a family with 3 boys coming and assume chaos will follow. Honestly, most of the time it did. My boys were close in age and had a few struggles, some health related and some not. But especially when they were small they kept me on my toes. The younger years were exhausting, but still I loved it (most of it anyway!)

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As the years passed some things calmed down and some things got more difficult, but it was great to see their changing relationship. Some days they would fight constantly, other days they would play for hours making forts in the living room, coming up with plans for future businesses, and building towns out of Legos. It was fun and amazing to watch, and fun to wonder what the future would hold.

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April 8, 2016 threw a huge, horrible wrench into the future- not just for Doug and I but for our younger boys. They were 13 and 10 at the time and I know that day was at least as devastating for them as it was for us. In just one moment things changed. The middle, who had grown up the middle, was suddenly the oldest. The youngest, still the youngest, was suddenly without the brother that he had the most in common with. Things changed that day in the most twisted and unfair way.  Something none of us had any control over took our lives and shook them making us painfully aware that from that day everything- EVERYTHING- would be different. And none of it was anything we asked for.

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I think to a child the death of a sibling or parent is probably the worst possible thing to happen. Someone who was there, all the time, and every day, is suddenly gone. They just disappear. It makes no sense. For many of us family is a constant. Something you can count on. But this kind of loss for a child brings a new uncertainty.

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My boys are the reason I write this post today. These two boys surviving the loss of their big brother have overcome a huge loss and they still shine. They work hard and participate in Scouts and other activities despite the loss and trauma they have endured. Their brother was a fighter and they are too. They have a very different battle than he had, but this one seems impossible at times. Since Gabe’s death they have both received awards at school for their spirit and determination and I have to say I can’t think of more deserving kids. I am floored by their resilience through this incredibly difficult life event.

The future is a blank slate. For my surviving boys each of their blank slates has a missing piece. As they work out their futures they will have to work around that piece. It will always be there and will impact their lives. I wish their brother was still here with them as their futures unfold, but I rest assured knowing that his life will never be forgotten and his impact on them will remain forever.

*This post was read and approved by the two wonderful boys I wrote about*

Opening Weekend

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Memories are happy and sad. And they are triggered by just about everything. Swimming pools are one of those triggers. Gabe LOVED swimming. From when he was very small, going to a pool-any pool- was one of the things that made him happiest. Leaving the pool was always met with protests, sadness, and often tantrums.

When we moved into our Dayton house we hit the jackpot. Our next door neighbors had 2 wonderful dogs AND a pool! A pool that they let us use pretty much whenever we wanted. All three boys loved it, but Gabe was particularly focused on that pool. As Memorial Day weekend would get near he would watch from upstairs in Liam’s room- the room with the best view of the neighbors yard. At any sign of a change near the pool he would watch even more closely. On the days when they would adjust chemicals, fill the pool, and get the deck ready they would see him upstairs waiting anxiously. We would get reports from Gabe on the progress “They must be getting the pool ready!”

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In 2014 we got Gabe’s surgery date early in the spring. The date of surgery would be June 9. He would not be able to swim for at least 4-6 weeks after surgery. That news was pretty devastating for a kid who loved the water so much. Also that spring the neighbors decided to get a new, bigger pool. They knew that had to hurry to put it in so that Gabe could swim before surgery, so it became an effort between them, us, and the neighbor on the other side. We all teamed up one weekend and had a pool raising. It was a lot of effort, and every one of us was needed (except for one of my boys who I think snuck back home!). We put up the walls, got the liner in, and then used hoses from all of our houses to fill it quickly. It was done in time, and we even had a bonus day before surgery- his grade went to the Waterpark but he couldn’t go. His doctor didn’t want to risk any infections that he could pick up before surgery, so he and I stayed home that day and had the pool to ourselves. We swam and visited with the dogs. It was a good day, and I was so glad to have that pool since he had to miss out on another fun activity.

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Now when they set up the pool it’s a bit sadder. I know we all miss him when that event happens. We always miss him, but at certain times it’s so obvious that his excitement isn’t there anymore and that really hurts.

We also belong to a community pool, and his absence is loud there too. Once we joined, every chance he got he wanted to go there. He loved seeing friends, and I know he also loved showing off his scar. Gabe was not a quiet kid. At all. He was one of the loudest kids I have ever known. When I would take the boys to the pool, no matter where he was, I could always hear him. Happy, sad, angry- I could hear him. I miss that. I miss the happy. I miss the sad and angry too. I still love going to the pool and talking with friends. I love seeing my other boys with their friends. But Gabe is missing and the hole he leaves can’t be described.

 

 

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Us Without You

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Band. Marching band, concert band. Percussion. Those things were so important to Gabe. He started out on the clarinet in 8th grade, but thankfully was allowed to switch to percussion. He just didn’t enjoy clarinet. He LOVED percussion.

When he started high school he joined the Marching Knights, and did percussion in the pit. I remember the first home football game I went to, and when the band started walking down to the field the person behind me said “Oh great, it’s the band”. He was very exasperated and it was really quite sad to hear. There was so much I wanted to say to him, but I realized that he probably wouldn’t listen anyway. So I’m going to say it now.

Band is important. Band was one of the most important parts of Gabe’s life. School was difficult for him, I know he was picked on some, and he lived with the burden of a life threatening heart defect. Those things are huge hurdles for a teenager. Band gave Gabe something that he loved. Because of his heart defect he could not do contact sports. That ruled out several high school sports, as many sports are contact. Band gave him a team that he could participate in. It gave him an activity at school that he could do. He could put his all into something and be a part of something wonderful. I know there are others who were in similar shoes- health conditions limited certain things, so they found themselves in the band. Even within the band Gabe had to work with his limitations, so he was in the pit which was less strenuous but just as important as everything else.

So to that man sitting behind me (who will probably never read this), or to anyone who gets irritated at the football games when the band comes out- please respect those students. Respect that sports are not their thing and that is ok. Respect that some do sports AND band. Respect that some of them would love to do sports but can’t. Respect that they put so much work into their performances. Weeks during the summer, rehearsals just about every day after school, and they sacrifice Saturdays for all day long competitions. To you the band may not be important, but to some of those kids band is their life.

 

The video above is an original piece written by Rob Nash, Gabe’s beloved band director. It is a mix of things important to Gabe, which Mr. Nash explains at the beginning. It begins with Me Without You, by TobyMac. Thanks for reading and listeni

Progress, I guess

Every morning I drop my middle son off at TA, the high school where Gabe attended. This morning I was thinking about how different it feels even just seeing TA than it did 2 years ago. I will never forget the first time I had to sit at the light, leaving the elementary school after dropping off my youngest. I sat at the light and right in front of me, across the street, was the high school that my oldest child no longer attended. It was a punch in the gut every time I had to do that, or had to pass the school. I would see the school that my child no longer attended because he died. Every day as I went to work I had to pass the school, cry, and pull myself together before walking in to care for children.

Those early days (and weeks, and months, and really year and a half+) were brutal. They were brutal in a way that only those who have buried a child (or probably a spouse with a very untimely death) understand. In those early days (and weeks, and months, and still most days) there were tears every single day. But often with those tears came panic. A panic so horrible that it was hard to breathe. That panic was brought about by my heart slowly realizing that a part was missing and it wouldn’t ever return. The panic would come as I would remember, over and over, every detail of that horrible day. And wishing in my mind that I could change those memories and make them un-happen. That panic would happen in the shower, in bed at night, in the car, driving near the school. It would happen when I would hear a siren, or get passed by an ambulance, or often in church as I looked around and saw so many intact families. It happened at the dentist when I had to update the information in my boys charts- but only for 2 boys because only 2 were still living. It would happen in too many situations to name. A few times it happened at work but I was able to pull myself together. It’s a panic that most people around think needs to be fixed. That the sadness of grief needs help to get better- through medication and counseling. And no doubt those things have their place. But the reality of this kind of grief is that nothing will fix it. It needs to be lived and worked through.

Thankfully now I don’t tend to have those panicky moments. Definitely not the moments that literally take my breath away. There are still sad days. They are not as frequent but still very brutal. I don’t think those sad days will ever fully end. Today I am in a better place than I was 2 years ago, and that is progress. I am grieving at my own speed and I don’t really care about what anyone around me thinks. This is, after all, my journey. I’m so thankful for the friends who still walk with me (literally and figuratively) and haven’t put any pressure on me to get better. Those friends love me exactly where I am and for that I am eternally grateful.

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The picture I placed above was given to me when I went to see a grief counselor within about 2 weeks of Gabe’s death. I think it captures the journey of a grieving parent perfectly. That is what it feels like. No other words are necessary.

 

Passed away? Lost? No, died.

*Before I start this one I want to just put a reminder that these are my own feelings about death. I don’t care how others refer to those who have died, but since this is my blog I’m sharing my thoughts.*

Passed away. Lost. Died. Went to Heaven. There are so many different ways to refer to  death. I have some pretty strong feelings on some of them.

Anyone who is friends with me on facebook knows that I usually use the word “died”. I actually did that from the beginning. I think it’s more shocking for people to hear, but in my opinion it’s just more real. I’ve realized that terms like “passed away” and “lost” tend to be more comforting for other people.

When someone says their child passed away it seems more gentle. But why? WHY should a parent be more gentle when talking about something as serious and earth shaking as the death of their child. Who does that help? It helps the person hearing the words but not the person saying the words. I have said it a few times and it just feels wrong. It almost feels like a lie. He didn’t just slip away. His heart stopped and he died. I don’t want to sugar coat that fact so that someone else might be more comfortable.

The other phrase that I haven’t used much is “lost”, as in “I lost my child”. I feel like that one just makes no sense. I didn’t, after all, lose him. I didn’t misplace him. I didn’t get separated from him at an amusement park or mall. Saying that phrase implies that I will find him. I am certain I will see him in Heaven again, but saying I lost him feels just as weird as saying he passed away.

Both of those phrases really seem to focus on making the person that is NOT impacted so much by the loss more comfortable which really is quite screwed up. I’m going off on a bit of a tangent here but I remember the night Gabe died a close friend came to the hospital. That friend had experienced the sudden death of her not yet 2 month old baby. And she told me that over the next days and weeks, and especially at the visitation and funeral, I would be comforting everyone else. And you know what? She was so right. That is exactly how it felt. I think anyone who has had this experience probably knows exactly what I’m talking about. Often when you are standing there, next to the casket, those coming up to express condolences are very upset, and the grieving parents are not crying at all or crying very little. Hug after hug, friend after friend, people express their sorrow and it feels like you are holding things together for them. I think most of it is shock- reality hasn’t set in that early- but it is an interesting phenomenon.

I really think that example combined with our choice of words around death just shows how neat, clean, and sugar coated we think life should be. We don’t like sadness. We don’t like grief. We don’t like situations that we can’t fix. So when something goes wrong we try very hard to make things easier for everyone else- even if we are the one who need everyone else to just be there.

I’m so thankful for all the people who came and expressed their condolences. I’m also extremely thankful for some friends who were truly there- early on and now- who didn’t place any expectations on my grief or seem to need me to sugar coat things for them. Who listened and who didn’t look uncomfortable when I used those words “When Gabe died”. Because he did. He died. And for the rest of my life those words will be true.