What I Can't Control

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. Gabe’s dad 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. 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 we 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.

Many months ago I shared about a very special item that we helped purchase for Ashby Recreation Association: an Automated External Defibrillator. I won’t rewrite the story- you can read it here in Be Prepared. It was important to have it at the pool and something we could do in Gabe’s memory that may mean the difference between life and death for someone.

The pool was so important to him. He loved swimming: Opening Weekend. This past weekend the pool opened for the summer and the beautiful sign pictured above hangs right above the check-in desk

When I walked in on Saturday I felt nervous. My heart was racing and I felt a little bit out of breath. I knew it would probably be up somewhere but wasn’t quite fully prepared to see it permanently mounted. Yet even as horrible as it is to know that the reason for the sign is the death of my child, the fact that it’s there is pretty awesome. My beautiful boy is right there. His name and dates along with his picture. He will always be remembered there, even by many who never met him. And the device purchased in his memory will be ready if it’s ever needed.

So every time I enter the pool I will see him, he will be part of the pool, and I will smile at the fact that a teen who loved to be in the center of everything has his picture in such an important location. A teen who truly lived for the pool has his picture there in such a prominent spot. At the pool, where I’m convinced he would have lived if he could have.

 

Oh so many triggers. They are everywhere. As time goes on my grief isn’t triggered as much, but often it comes out of the blue. Like watching a TV show with penguins and suddenly being brought back to our hospital related “vacations” in Boston. Gabe loved the aquarium so we went there a few times- before his cath and surgery and again after his surgery. I’ve seen shows about penguins but for whatever reason on one particular day a few weeks ago the penguins made me cry. A lot. There was sadness that felt so sharp like it did in the beginning. Darn penguins.

 

That really has nothing to do with music, except that music is a trigger too. And one that I have worked pretty hard to avoid. Gabe had many favorite songs and for 3 years I have steered clear of most of them. Sure I hear them in the store or on the radio, but I have chosen not to listen to so many because of that hurt that is lurking. I think that is a pretty common thing in grief- avoidance. It’s also probably one of the most exhausting things about grief. Bereaved parents become very good at avoiding things- events that will cause pain, sections of stores with certain memories, and their child’s favorite places. Because sometimes it is just easier to rush past that hard thing than it is to stop and go inside. Sometimes it’s just easier to push past the memories than let your heart remember.

And for me music contains those memories. “Shake It Off” (Taylor Swift) brings me back to him sitting in the back seat doing a silly dance that he did. “Wake Me Up” (Avicii) reminds me of driving to church with the boys singing in the back. All three boys. “Prodigal” (Sidewalk Prophets) reminds me of him- always breaking rules and needing love anyway, and a very special retreat he went on 3 months before he died. We also have some of the lyrics on his headstone. “Ride” (twenty one pilots) reminds me of the days after his death, when it really felt like he was just taking his time on his ride.

So today I made a playlist. I took many of the songs that I know he loved and that remind me so much of him and I put them in a this list.  I called it Gabe’s Strength because he had an amazing amount of strength and I hope to be able to carry some of that as I continue on. Because if there’s one thing a bereaved mom needs to keep going it is strength, and sometimes that strength comes from her child.

 

 

 

 

Raisin bran. I know I’ve mentioned Gabe’s obsession with Raisin Bran before (Post only, and not the Post that Costco has- it’s different!). When he ate his raisin bran he would clank the spoon in the bowl. Not intentionally, but because he was just loud and couldn’t do anything quietly. Ever. Even eat. We called it the cereal bell because it sounded just like a bell. And I’m not kidding when I say it would clang about 4 times a day. Breakfast, after school, after dinner, and then usually again right before bed. When he was actually supposed to be heading up to bed, but would remember at that moment that he was hungry. We went through a lot of raisin bran.

Grilled Cheese. He LOVED grilled cheese. I often had to make two sandwiches for him. He would eat about one and a half and then be full. But he loved them. His brothers don’t care for grilled cheese. I miss making it.

Nutella. When he got braces raisin bran was too hard to eat, so he switched to bread with Nutella as his favorite food. So the raisin bran routine above? It turned into a bread with Nutella routine but much quieter.

Gum. Oh the gum. He got started on a gum habit very early on. Because he had a disorder called Pica he would eat non food items. Giving him gum was a way to try to get him to not eat so many things. Except that he ate the gum. He would go through so much gum. We bought it in large quantities and had to move it to different hiding spots in the kitchen. He would always figure it out and the gum would disappear.

Milk. He drank so much milk. We would go through 5-6 gallons each week, most of it going to Gabe. He would take those big cups you get at JMU basketball games (22 Oz.) and fill them with with milk, usually mixing it with nesquick. He drank at least two of those every day. Sometimes he would try to get strawberry milk, but the red dye made him crazy. So we discouraged that!

Pancakes. I would make a double batch of pancakes and he would eat a healthy portion. When I put the leftovers in the fridge he would eat them, one at a time, as he walked through the kitchen. Open the fridge, grab a pancake, and eat it cold.

Granola bars. He could really go through granola bars. He LOVED the peanut butter and chocolate chip ones. While he was working during musical rehearsals he would bring those to school. And if he forgot I would get a frantic call after school that I NEEDED to bring 3 granola bars for him. And also his folder that he inevitably forgot.

 

I typed up that list so I will remember. Memories of those little quirks pop up from time to time and start to fade as time passes. Today I’m feeling sad. For whatever reason this morning at Mass Gabe’s absence was screaming at me. Our family is not complete. I’m a mom to three boys and for the rest of the years I live one will never be there. That could be a very, very long time. And I know, people like to say he’s there in spirit. Or he’s always there. Or be thankful for the other two (and, I am so very thankful for them!) But I’m going to get real for a minute- those things sound great but when it’s your child it’s not good enough. It’s just not.

Because I want him here. I selfishly want to buy Post raisin bran, huge quantities of bread and cheese for those grilled cheese sandwiches. I want to have to buy Nutella in the big jars at Costco. I’d give anything to hide gum in the kitchen again, to be looked at strangely when I put 6 gallons of milk on the conveyor belt at the store. I’d love to HAVE to make double batches of pancakes again to feed his carb addiction, and I would be so happy to have to buy so many granola bars.

I wish he was still here. Not in spirit. But actually here touching every part of my life. Today is Bereaved mothers day. Next week is regular Mothers day. I wish I only had reason to understand the one next week. Because now I understand the bereaved one, and the regular one carries a sting with it that will never be eased.

Oh yes, and yogurt. I would buy the individual cups to make it easier. He would scoop it into a bowl. I have no idea why. Such a weird kid. I miss him.

Today was a great day for me. This morning I got spend some time with a wonderful friend. It was perfect. This friend has been here listening and walking with me in my grief. Then I was able to go to a baby shower- another wonderful friend, who has also been instrumental in my grief survival, is going to be a Grandmother in the summer and we got to celebrate that new, sweet life that will join her family.

Today was beautiful. I couldn’t help but notice the beauty of the sky today. Puffy white clouds with gray mixed in, and various shades of blue. It looked like a painting. Everywhere I drove today I couldn’t ignore the beauty.

Also today, though, I heard that a girl in my area passed away. She got sick just a few weeks ago and yesterday she was unable to fight any more. Suddenly I realized how wrong the beauty of the sky seemed.

Driving around I couldn’t help but remember how it felt for me, 3 years ago. On days when it felt almost cruel that the sky looked so blue and perfect. It just felt so wrong.  I knew everyone was going about their usual business and enjoying the sky- just as I did today as another family is starting on this journey. I can’t say what they are feeling- while we have a common loss I am not them. But I do know that for me it was horrible. It didn’t feel like the sky should be beautiful. It didn’t feel like anyone should be doing anything. It felt like the world should stop. Because my world did.

So today  even though I am happy, I am sad for her family. And I realize that just because the day is beautiful to me doesn’t mean it is beautiful for everyone. For someone today is filled with sorrow. It’s not something I ever realized before Gabe’s death. But now it is not something I can ignore. Sometimes things in life are just so wrong.

Just like clockwork, seasons change and grief cycles through. March arrived on Friday. With the arrival of March begins a seemingly endless amount of grief. March 20 Gabe should be turning 18. He was born in 2001, it snowed on his birthday, I think. I was kind of busy but I seem to remember snow falling. He was cute right from the start. Newborn babies aren’t always cute, but he was. He had a full head of beautiful red hair. We had no clue about his heart defect, just that he had a heart murmur. Gabe’s dad and I were assured it would go away by his one week check up (obviously that didn’t happen!) There are so many things that March should hold. He would probably want some sort of party, and would be in the midst of planning for graduation and his next steps. Realistically those next steps probably would have been at the community college to give him some more time to grow up a bit. And that would have been fine.

But back to Clockwork. I’ve noticed that March hits me in full force. April 8 will mark 3 years without Gabe, so at this point I can see some patterns. March and April just downright suck. Yes, I said it. They really, really do. Spring is a beautiful time where flowers bloom and things grow and cute baby animals are born. My child was born in the spring and he died in the spring.  Over the next 5-6 weeks there are lots of significant dates- his birthday (March 20), his diagnosis day (March 27), the day of his first heart surgery (April 4), and the two hardest dates- April 7 when he had a wonderful cardiologist check up, and April 8 just one day later. The day we said goodbye. Those days hit one after the next. Every year like clockwork we would recognize his birthday and surgery day. The week he died we went to Dairy Queen for ice cream to mark that first surgery.

So it’s really no surprise that without even thinking about it my heart starts to hurt again. It’s always hurting some-that never goes away. But it hurts on a deeper level. It grieves on a deeper level during March and April.

As I go through this month and next I will do my best to put on my brave, strong face and go about daily life. I will stay in my role of mom, and be the best caregiver I can to the little ones at work. But just below the surface is a mom deep in grief. A mom who would give anything for her child to run through that door again bringing with him noise, chaos, and joy. This is the grief of a mother and this is how I live.

**The following pictures are from his 12th birthday. He insisted on decorating his cake, he loved baking. These are some of my favorite birthday pictures of Gabe**

 

This video is so hard to watch. It’s hard to share. But some days it almost feels like he wasn’t here. As life moves forward and everyone grows older there is a weird kind of emptiness that just can’t be explained. But he was here. So I share this during Congenital Heart Defect Awareness Week. My CHD warrior who was so proud to stand up there next to me as I told a little bit of his story. He was very much here.

 

 

Yes, even though some days everything about him feels so distant…he was really here.

When you become a parent of a child with an illness or birth defect, there is something that happens. You spread awareness. If they do well, it is something you really WANT to do. “Look world, look at my child kicking (insert illness here)’s ass!” It is a pretty awesome feeling. When that child goes through things that should kill him yet he fights anyway. Because babies and children don’t give up. They want to live. And when they do you want to share.

As Gabe grew he became a poster child (literally in some situations) for Truncus Arteriosus, and for Congenital Heart Defects. Gabe was even given a very special role in his school’s Jump Rope for Heart program. There was a bulletin board dedicated to facts about him and pictures from his time in the hospital. I shared some facts with the school and they shared those facts during morning announcements, giving the children at school a way to see that heart disease impacts people of all ages. When he was a toddler we started doing the AHA Heart Walk and we raised money with our amazing warrior.

Gabe rocked the hurdles thrown at him and was so amazingly positive. He was a wonderful poster child for CHD. He got attention for it and he ATE IT UP! He loved showing people how strong he was. He loved showing off his scar. The pool was his favorite place to be and I know that most of it was because he loved water but I also think at least a little bit (maybe more than a little) was because he loved showing off his scar. He didn’t want to minimize it with creams and lotions. He wanted people to know how strong he was.

Since Gabe’s death my role in CHD awareness is kind of in limbo. When Gabe was living it was such a wonderful thing for other heart parents to see him doing well- to see what their little heart warriors may one day become. Now, though, it is very different. It is really quite awful for other parents to see what could happen to their heart warriors. Gabe’s story is terrifying on many levels. He didn’t get an infection and slowly die. He didn’t need to be hospitalized for a heart failing slowly. No. He had a perfect check up the day before. There were no signs (his cardiologists have scrutinized everything from that appointment). Nothing was off. Everything was stable. Yet just over 24 hours after that appointment he collapsed. He received immediate CPR and shocks to his heart from an Automated External Defibrillator. But in children who have undergone multiple surgeries for CHDs immediate treatment doesn’t always work. Gabe’s heart had been operated on three times. Stopped, sewn, and restarted three times. And that put him in a very bad place.

So his story is one that I hesitate to share with heart parents, especially those new on this journey or with a baby, still in utero, who has Truncus Arteriosus. It’s pretty scary to think that you could have your child there and love them for days, weeks, months, or years only to have them suddenly die and shatter the world as you know it.

But worse than that, worse than saying goodbye after 15 years, would have been never having loved him at all. Watching him go from baby to adorable toddler, to child, to teen. Every bit of the pain I feel now is worth it.

So here is my CHD awareness for right now. And it touches on something that has come up so very much recently. Often parents are told while they are pregnant that their baby has a heart defect. And often they are offered the option to end their baby’s life- because they are told their child is guaranteed a life of surgeries and suffering. Often those parents are told by several doctors, in several facilities, that it would be for the best for the child not endure those things. And often those heart defects are quite survivable with surgery.

To anyone who knew my child, did he look miserable? Did he seem to have a poor quality of life? Was his life worth it? Because I think it was. I know it was. A few months before Gabe died a dad came to my online Truncus Arteriosus support group and told of his child in utero who had Truncus. That dad asked what Gabe’s opinion was, should they continue with the pregnancy. In his wonderful 14 year old way when I asked if they should terminate he said “Tell them don’t do that, that would be stupid. I mean it’s hard but it’s not that hard.”. When I told the dad that I omitted the part about it being stupid, but I shared the rest. It’s clear to me that even as the one going through those difficulties and surgeries, Gabe still felt his life had worth.

To all of you parents with little CHD warriors, I hope Gabe’s life will teach you that every minute is worth it. To anyone who is pregnant with a CHD warrior, I ask you to consider giving them a chance to prove how strong they are. Because if you don’t give them that chance you will never know how strong, beautiful, and perfect they are. And I think that would be horribly sad.

Ok, feeling more bitter than sweet. Just about 2 weeks ago I started taking a class. It’s Medical Terminology. I LOVE the subject and it’s kind of my first dive into any medical class. The format is online which works really for a busy mom with a part time job and a side of grief. This is a bit of a test for me. I’m not sure if there will be more classes later (there likely will be), or what those classes will be in, but I needed to start somewhere and see if I could handle college at this point in my life. It has been 20 years since I received my degree, after all!

So far it’s going great. I’ve only taken one chapter test and a test about the syllabus but I’ve done well on both. But there’s a bitter to this. I’m not supposed to be the one taking a class. The way this was supposed to go is that I’m supposed to be sitting down with my high school senior and helping HIM select his course of study and his path for life. Life just doesn’t go how it’s supposed to though, does it?

This is the journey of child loss. There will forever be things that just feel wrong. The challenge of this journey is to let those feelings come and somehow be able to continue on and even thrive in that wrong-ness. That is no easy task. It seems this class represents something much larger than just a class. It’s part of my journey of learning how to grow and thrive in the wrong-ness. I will keep studying, keep doing my best, and keep remembering my boy as I move forward.