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.**

Suffering

Talk about timely. I think God is probably trying to tell me something with this one, so I’ll share. The past few days I’ve been thinking a lot about suffering. There are so many things that bring about suffering, but I think having your child buried in the ground is probably one of the top things. There are other things that are extremely painful, but that is the one I know about. So that is the one I discuss.

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This theme of suffering has really been floating through my brain. I feel like I’m getting to a point in my grief where I know that there will always be grief, but I’ve decided it won’t ruin me. It’s taken a lot to get to this point- lots of suffering, lots of crying, AT LEAST two cemetery visits week, and 85+ entries in my journal (which I almost exclusively write in at the cemetery). The cemetery is where I do my best thinking. I cry too, but I think. I contemplate life, death, my family, and the future. I contemplate how to go about continuing to live with my firstborn son buried. I contemplate my friendships, my work, and whatever else comes to mind. It’s a quiet and fairly deserted place. I can work through my suffering there and not have to worry about what anyone else thinks about it. It’s usually pretty peaceful and except for the occasional black bear visit it’s safe!

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But back to suffering. As I said this has been on my mind, and this morning we had a visiting Priest- and it’s like he was talking directly to me. His name is Fr. Jay Biber, and he is a retired Priest from Lexington. His homily (aka sermon) was about suffering. He discussed how we all go through suffering in our lives. And God gets us through it. We suffer and we move forward. Now going through grief I know it’s not a linear process. Sometimes I may take one step forward and three back, but I can say that most days I don’t suffer the way I did even a few months ago.

The thing that Fr. Jay said that really jumped out at me, though, was something he said at the end. I had to dig for a pen to write it down so I probably did not remember the words correctly, but here is the gist:

“I don’t have the answer for you, but I’ll be here while you walk through it”

(edited to add the actual quote: Thanks to a friend who wrote it down!
“I don’t have an answer for you, but I’ll go there with you”)

He was speaking to the children in particular at that point- how even a child can put their arm around a suffering friend and say those words. But those words mean a great deal to me. Because over the past 2 ½ years I have had several friends who did that for me. They didn’t (and don’t) have the answers. They couldn’t (and can’t) take away that suffering. This journey is mine alone. But they have been here, walking with me, as I walk through my own suffering. By walking with me in MY suffering and acknowledging it, they eased my pain a bit. They couldn’t take it away or rush the process but they have helped me ENDURE it. And for that I will be forever thankful.

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Rediscovering Me

Grief hurts. It hurts you down to the core and changes things that seem like they will never change. When something that is such a huge part of your being is taken away things change. I don’t really think it’s possible to not undergo change after burying a child.

 

I lost myself on April 8, 2016. Throughout the past 2 years and 5 months I’ve been trying to find myself again but sometimes it seems like it’s not really working. Sure there are still parts of me that are there, but many are not.

 

I’m at a bit of a crossroads. My child died. But I didn’t. So from this point on I have to live the best life I can. It’s painful to realize that. It HURTS to somehow be OK with trying to make the most of this crappy situation. It hurts to somehow be OK with moving forward at all. My feet want to stay firmly planted in grief, but I know that’s not how the rest of my life has to go. So I’ll keep walking forward, one step at a time. I’ll surround myself with those who are sensitive and empathetic, and patient as I figure things out, because anything less would dishonor that beautiful child and his amazing conquer the world spirit.

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Reframing

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Reframing. Adjusting. Shifting. Sometimes it feels like there was a tornado. It kept some things intact and others…not so much. When something horrible happens you have to rebuild, and that rebuilding can be painful and scary.

My life is kind of in a reframing place right now. I can’t change what happened. Believe me, if I could I would. Whatever it would take I would change it back. But that is just not how life goes. So now I have to take the mess, the pain, and the sadness and start to rebuild. As for how that will happen or what it will look like, well I’m not really sure. What I do know is that this very sad thing, the death of my child, will not ruin me. My job now is to sort through the mess and figure out where to start this process. I know I’m stronger now then I was before but I need to figure out how to proceed. So thank you to all who are still here, sticking by me as I figure out the new me. And stay tuned for what that will mean. I can’t wait to find out.

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The Empty Room

It’s right there. At the top of the stairs. Gabe’s room. It’s filled with stuffed animals, tons of clothes, and little things he collected over the years. The sheets are still on his bed, unwashed. The clothes he wore on April 7 are still in his hamper (though I have to be honest- I put them there. They were on the floor before).

Gabe’s room is not in great shape. There is plaster chipped on the walls, and cracks, and some paint peeling from the window frame. He didn’t seem to mind those things. He just loved that it was HIS room. He had this great loft bed and he loved being high up. We offered to get him a normal bed but he never wanted that.

Above Gabe’s door is a window, as old houses often have. Sometimes he would try to sneak and text friends late at night, but I could see the glow of the screen through the window. Handy for his parents, not so handy for him. Gabe also had a temper and would often slam that door. Amazingly the glass never broke.

I think the most interesting thing about Gabe’s room is how I haven’t been able to change anything. I never understood, before, why people kept things the same after someone died. I never understood how people could hold on to everything. I understand now. I don’t want to get rid of anything he touched. It is all there. It is some tiny connection to him, and I want to keep it all- his shirts, pants, socks, wallet, backpack, skateboard and helmet. Everything he wrote, everything he touched. The items that we carefully selected to display at his funeral are in there too, in blue plastic boxes lovingly packed up with the help of a wonderful friend.

Maybe one day I’ll feel the courage to change his room. Or maybe not. And that’s ok.

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

 

 

 

Lean on Me

 

Sometimes in our lives
we all have pain
we all have sorrow.
But if we are wise
we know that there’s
always tomorrow

 

Friendship. The world of a grieving parent is defined by the before and the after. The line between the before and after is THAT DAY. That awful day when everything changes and the world as you know it gets shaken to the core. So many things are different from that point on. And when the people involved become different, as we do, relationships change. I am not the same person I was. I know that. Truthfully it is not possible for me to be that person. That person was extremely optimistic, kind of Pollyanna like (some of you probably don’t know what that means). I did worry a lot about things like Gabe’s health, but it in general I almost always had a smile on my face and was just really positive.

When the worst thing that can happen DOES happen though it makes that kind of happy attitude change a bit. Some days I really can’t force myself to smile. There’s a man in Bridgewater who sits in the Dairy Queen parking lot EVERY school morning, rain or shine, and waves at cars and buses that pass. Before Gabe died I always smiled and waved back. Now when I pass him some days I smile. Other days I just can’t.

So I think it’s understandable if people back off. Not everyone is going to like this new me. I’m OK with that. When this tragedy happened though something else happened. There were people, some I knew mostly as acquaintances that turned into more. They stepped up and spent countless hours with me and with my family. There are a couple of friends who were there before and reached out and were there as much as we needed them. These people have all made this tragedy survivable. My friends have been there with hugs, coffee, meals out together, too many miles of walks to begin to guess, lazy time at the pool, pedicures, and even a wonderful day at the spa. They have continued to invite us to get togethers, girls nights (ok just me for that one), parties, and weddings, and they understand if we need to leave because we are sad. They have become a beautiful family to me and the boys. They love us in our happiness, but also in our sadness. That is not always an easy thing to do.

Through Gabe’s death there is also another category of friends that I have met. These people know the same pain as me. They have had to say goodbye to a child. There is a connection between us because we share a pain that is so deep it can’t be understood. We can talk about the horrible circumstances around our worst days and not have to be afraid of sharing too much. We don’t necessarily make the best friends because we are all dealing with grief, and forgetfulness, and lack of energy- but we all GET it! So expectation is low and we are very forgiving of each other. We form this club that no one wants to join- but we are all glad to have each other. There is power in looking at another Mom who lost a child so many years ago and seeing that life can still be OK, that it’s not how you wanted it to turn out but it can still be ok.

On Thursday of this week I will get the wonderful experience of meeting a new group of bereaved moms. These moms have all had children die due to heart defects. Some as babies, some older. We all come from very different backgrounds but we all share that one really big thing.  We will be free to talk about our children, living and dead, and not have to worry about saying the wrong thing. This will be a different kind of retreat and I think I will like it.

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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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.

 

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