Support. It is such an important thing. Over the years I have been able to seek support from friends and family. But there’s a type of support that doesn’t usually come from those we are close to. It often can’t.

In some situations we need support from those who have been there. Those who can say “I get it”. “I know how it feels”. Sure, they may not know EXACTLY how we feel inside (no one truly can). But those people who have walked the same path as us understand in a different way than others can.

Shortly after Gabe was born I found a great group full of people whose children also had Truncus Arteriosus. It was such a blessing to have this group of people who all understood. Those people could say they had been through it and could offer their wisdom and advice. And perhaps the most important thing was that they could say that despite the hard times their children were still there, still thriving. That encouragement was priceless during some very uncertain times.

Later on when my youngest son was diagnosed with a neurological disorder called a Chiari Malformation, I sought out more support. I found other parents who were able to give advice on tests and specialists. It was wonderful to have that support so I wasn’t entering yet another world of medical complexity alone.

When Gabe died support became even more critical. Death of a child is brutal. Death is brutal, but losing my child who was there every day was a particularly difficult pain. I needed to talk to others who had been through it and were still thriving. I needed to see that although I felt like an emotional basket case I would not always feel like an emotional basket case. I needed reassurance that the hard days wouldn’t always be so hard. Reassurance that the constant sadness would one day be less constant, and reassurance that eventually happiness would come again.

Now I’m going through this new struggle and I’m needing support. Thankfully I have found it in the form of a great counselor, a friend who is going through it, and a face to face support group of others in the same boat. This newest struggle is hard. I had someone by my side to get through the other struggles and that person is no longer here. So I will rely on others- those going through it and those who have been there. Those people will reassure me, just like after Gabe’s death. They will reassure me that one day the hard days won’t be so hard, the constant sadness will one day be less constant, and that eventually happiness will come again.


As time has steadily moved on since Gabe’s death I have noticed that certain things don’t trigger my grief like they used to. The most recent realization was on Wednesday evening, with incense.

I went to Mass and adoration and there was incense. Incense plays a big role in Catholic masses and on holy days. It is also burned at funeral masses. I very vividly remember sitting in the front row at church as the priest swung the thurible (the name for the incense burner) over Gabe’s casket. The symbolization was of Gabe’s soul going up to heaven. I remember the lighting of the church at that moment and the reality of what that meant. It hurt.

Needless to say after his funeral Mass incense was painful for me. Almost every time it was used I felt sadness. Sometimes my heart would pound before I would even realize what was happening- it was such a strong trigger. At some point, I guess, I adjusted to it. It stopped being a trigger. As I sat in my pew on Wednesday night I was completely fine with the incense.

I think this shows progress. It’s been almost 3 and 1/2 years so it’s taken a while but it was a gradual desensitization that I’m so thankful for. It truly does take time. I know there are other things that  will continue to be triggers for a long time, but I’m very thankful that this one beautiful thing is now beautiful again.


**The picture above is at the Easter Vigil on March 26, 2016. Gabe received his First Holy Communion in the Catholic Church that night, it was 6 days after his 15th birthday and 13 days before he died. The picture below is a cross that was cut out from his casket. It sat right on the top, and we were given the cross to keep. The casket was a beautiful wooden casket made by the Trappist monks, given to us as they do for children who die.


When grief gets pushed to the side

What I Can’t Control- I chose the name of this blog very specifically, from lyrics of a Matt Hammit song that I identify with (Why this blog?). When Gabe died there was this gigantic piece of life that I couldn’t control. In the early days of the loss of someone so significant, the grief takes over. It truly is all you can think about. At times it literally takes your breath away. For several months I would have episodes of heaving sobs where I would have trouble catching my breath. Nothing I have ever been through even comes close to that. That deep grief is absolutely uncontrollable. You can try to control it, but it just comes out in other ways- fatigue, pain, depression, and so many other ways.

As time progresses it changes shape. By time I mean years, not weeks or months. Eventually it becomes almost comfortable, that grief. You carry it around with you. There are times it emerges but it’s not as severe and it’s not overpowering. I have been carrying this grief around for just under 3 and 1/2 years. My grief and I fell into a rhythm. Gabe’s presence kind of sat in my heart. It felt comfortable. He was still so far away but also felt accessible.

Lately though, that grief has changed again. I find myself in a position where I am in need of a full time job, among other things. A new What I Can’t Control is here. Life is shifting again and with that shift my grief is shifting as well. I have found that Gabe is distant. It’s almost like I have no room to process my grief anymore, like he’s getting squeezed out of my heart. It is painful. He’s feeling more distant and it is extremely uncomfortable. My hope is that as things settle down and my new situation works itself out I will once again have more room to hold him in my heart.

As I work through these changes and eventually disclose what this new situation is my blog may take on a slightly different focus. This blog will evolve, just like my grief. My faith is still strong, and I have so much support from friends. I’ve been through the absolute worst. I can get through this thing too.



The hard times quota

You go through something hard. That should be it right? When something awful happens like the death of an immediate family member, or a horrible diagnosis, or any number of awful life events- that should be it! That difficult event should be your quota. I remember thinking shortly after Gabe died that his death was my hard thing. I would grow and recover and that would be it.

Unfortunately that’s not how life works. Soon after Gabe died life kicked back into gear, tossing some struggles at our family with an employment situation that caused immense stress. And then there was just day to day living that was difficult and felt impossible at times.

And now there’s another situation that I can’t share about but is extremely difficult. It seems so unfair. It seems like I have been handed too much. But you know what? I have been through the worst. So that huge, awful thing that happened on April 8 2016 has prepared me for this. I made it through the deepest grief possible and I’m still standing. I didn’t think I could survive it but I did. I can look back and see that although I walked through the deepest sorrow I am still here.  As awful as the place I am standing now feels, I KNOW that I can overcome this obstacle as well. I don’t want this obstacle, I’d love to just wave it away. But I can’t.

So now I stand, finding the need to recreate myself and figure out who I am and what I want. And hoping that maybe THIS event will fill my hard times quota. I know in reality that it won’t, but hopefully it will count for at least a little while!

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Zootour 2019

My boys LOVED the name. Let me tell you 😉 . Several months ago I started planning a family trip and this is the name I came up with. I didn’t get shirts made (they never would have gone for THAT!), but I did refer to our trip as Zootour. Just seemed catchy!

You’re probably wondering what the heck I’m talking about. Those of you on Facebook saw the many pictures, but most people don’t know the significance behind it.

As I wrote about in my last post (Graduation…we survived), June 8 was significant. It was the day Gabe should have graduated. He should have been sitting there in his cap and gown with his friends- but he wasn’t. The awful thing called Congenital Heart Disease stole that milestone and all the others. So we knew graduation would be a tough thing and we knew we would need something good after that tough thing.

We also knew we needed a vacation. Our family has been stressed. Continuing on with a child missing is HARD. It’s not something that’s just hard for the first year, or the first two years. It’s something that ebbs and flows and sometimes out of the blue it just seems even harder. There is no rhyme or reason to the hard. It makes work hard. It makes life decisions hard. It makes family life hard. It makes marriage hard. So we knew we needed a vacation.

Before Gabe died we took few vacations. We really only had one big one, just us- and it was his Make A Wish trip. I think most people don’t realize it, but when your child has a chronic, life threatening illness vacations are not always a priority. There isn’t much money for vacations, and earned vacation time at work is limited. Doug always had to keep some vacation days in reserve for the inevitable procedures and surgeries. And we had 2 children with complex medical issues, so there were twice as many what ifs and twice as many medical bills.


After Gabe died we took 2 vacations. One was 2 months after- a desperate escape to Tennessee that I think was more about escaping our reality than spending time together. It was actually terribly excruciating, arriving in the cabin with one missing and not having him there to share his excitement for everything as he always did. At the end of that year we took a small trip to Williamsburg right before Christmas, to keep busy in the days leading up to what we knew would be an extremely difficult time. That was slightly less painful but really still not a vacation.

So this year we decided we needed a vacation. We needed it for this family that has been through so much and is still here. Early this year I started planning and narrowed down where we would go. Why zoos? Because they are fun! And for me it was also about something Gabe would have loved. Gabe never forgot the name of an animal he met and I’m sure he’s surrounded by animals in heaven. I felt like visiting zoos would be a great way to still incorporate him into our vacation.

We left on June 9, which ironically was the same day that he had surgery in 2014. So it seemed fitting. Right before we left though I went through the house to make sure everything was turned off and couldn’t fight the tears. Because I don’t think any family trip will ever feel right again. Sure we will have fun. But it will never feel right. Because he should be here.

During the course of the trip we drove over 1,000 miles and visited 3 cities and 3 zoos. We fit in stops at the Indianapolis Motor Speedway and the Rhythm Discovery Center in Indianapolis (it’s a percussion museum and it’s great!). The zoos we toured were Cincinnati, Indianapolis, and Columbus. Our hotel rooms got progressively smaller unfortunately but the trip was great. There was little complaining, not much fighting, and I really think we all enjoyed ourselves. Our favorite was Cincinnati with Columbus as a close second. We saw so many animals. Since Gabe loved animals so much he would have loved it. We often talked about what we thought he would have liked,  so it was very bittersweet.

We’ll keep moving forward. We’ll keep remembering that amazing spunky boy who overcame some really hard things. And we’ll try to use that spirit to help us overcome our really hard things. But I know that sometimes no matter the fun and joy, it will also sting.

Some pictures from our vacation:







As you can see we had lots of fun, but by the end the boys were ready to go home. One more picture from the percussion museum. We miss you, Gabe!


Graduation…we survived

Graduation. I had been dreading this. Right at the beginning of the school year the anxiety about graduation day started. Senior night for the marching band was kind of the beginning. Then other things came throughout the year. So many things Gabe should have been there for. One after the other. College application deadlines, friends taking their kids on college tours. The hits just came, over and over. One after another. And each one hurt. Some more than others. Looming over it all was that one day I knew would come. Graduation day.

My wonderful neighbor is the head of guidance and very early in the year she gently and kindly mentioned that graduation would come eventually and the school would do whatever we needed or wanted. And I pretty much pushed that day out of my head. Periodically someone would mention something and I’d ponder it and push the thought away. As June 8 got closer it became kind of unavoidable. And honestly up until the day I didn’t even know if I would go. Doug wanted to go, it was pretty much no question for him. But me? I had no idea. I knew it would be painful to see Gabe’s wonderful friends walk up and get their diplomas. Wonderful for them, especially a few close ones who have faced their own struggles. But also extremely painful. A very clear mark of something my child should be there for but wasn’t.

So maybe a week before graduation a trusted person suggested I go. He mentioned that maybe it would be healing. And if it was too much I could just leave- people would understand, and if they didn’t who cares? Now knowing myself I never would have left. I like to blend in and getting up and walking off the football field full of graduates and teachers would mean attention on me. But I knew that if I needed to that was a choice.

As the day got closer I leaned more towards going and decided I would. Not just to be there for Doug (though I did want to be there for him) but for me. Because it was something that Gabe should have done but didn’t get a chance to. I knew I’d regret not going.

The day arrived, and Doug, Liam, and I processed in at the front. Owen played with the band, exactly where he wanted to be. There was an empty chair with a cap and gown draped over it, and a beautiful bouquet of flowers on the seat. An empty chair for my son. We sat through- the wonderful speeches, the standard beach balls and a giant duck float getting tossed around by the graduates, and some beautiful choir music. We had a front row seat as so many of Gabe’s friends walked up and received their diplomas. At the end they shared that part of the class account would go towards Camp Holiday Trails in memory of Gabe, and part would go to the family of one of the seniors- his father died suddenly in March.

And then it was over. The graduates processed out and Gabe’s math teacher brought his cap and gown and the flowers over to us. His math teacher whose son died while he was a student at Virginia Tech. The fact that she was the one who gave us the flowers was particularly meaningful.

So we survived. We cried but we survived.