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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.

 

Something so seemingly insignificant. A piece of furniture. It’s important to have a comfortable place to share time with family, but I really hadn’t given much thought to our couches. I guess I did give SOME thought to them- how they looked dirty and I REALLY didn’t want to steam vac them again. And how it seemed we could never all sit comfortably in our living room- someone was always squished on the loveseat and someone was confined to a chair and I knew there had to be a better option. So a few months ago I started looking. Maybe it was more than a few months but time is a funny thing when you’ve lost someone you love and sometimes more time has passed than I can remember.

When I started shopping I looked at and almost bought a reclining couch and loveseat set, but it was just way too expensive. It seemed silly and frivolous and not a true NEED. But a few days ago I was in Costco and saw a similar set for a very reasonable price. There was some money saved up and knew it was an OK expense. I thought about it overnight and decided that yes, it would be a good purchase.

I was expecting to love them and I did. They fit in the living room perfectly and I have to say having four recliners is pretty awesome. It feels like a splurge but a good one. What I wasn’t expecting was these new couches to trigger my grief. That night as I lay in bed I realized I felt sad. Sad because this was a change. A seemingly insignificant change to most, but a big one to me. I was sad because Gabe sat on those old couches. When he was sick, when he was sad, when he was happy, when he was so tired because it was time for surgery, and when he was recovering from surgery.  He was here and he touched those couches.

Really it’s not about the couches. It’s about the memories. Memories of my sweet boy living on those couches, and in this house. It’s not really that I’m sad about getting rid of furniture. It’s that I’m sad that he’s not here anymore. The memories will still be here, I just really wish it wasn’t just the memories. I wish he could still be here, making new memories, sitting on these new couches and enjoying the fun of the recliners. Oh, how he would love it!

I’ve been wanting to write this post for a long time. A really long time actually.

After Gabe’s death there was one thing I was thankful for, and that is that I knew that everything was done quickly that could possibly have saved him. He received CPR and there was an Automated External Defibrillartor (AED) at the school where he collapsed. I was thankful because I never had any question of what if with regard to an AED. There was no question of whether he could have survived if only an AED had been avaliable- because there was one, and it was used, but due to the nature of his heart defect and scar tissue on his heart it just didn’t work. But it was there and it was tried.

I have come across more than a few families in this journey, though, who didn’t have that assurance. Their loved ones collapsed where there was no AED and there is always that question- if there had been one there would their child have survived? That is a huge burden to carry- that feeling of what if. The only way to minimize that burden is to have AEDs available in as many places as possible, especially places where people are exerting themselves.

This brings me to the community pool. Shortly after the pool opened in May as I sat there I realized there didn’t appear to be an AED. I looked into it and sure enough there was none. To me that did not feel acceptable. Gabe’s dad and I discussed it and decided that we would try to help obtain one for the pool. We talked with Cary Jackson, the president of the pool board who agreed and we decided to start the process of obtaining an AED. Cary did all the leg work- making sure to get the grant and getting pool board behind the effort.

AEDs are not cheap, and I think they may seem unnecessary to some. Sometimes people feel like having a rescue squad nearby is good enough. I can understand that feeling- the squad is about a minute away. But in an emergency you have to make the call, they are dispatched, and then have to get in the vehicle and get to the emergency. Even with phenomenal response times that is not good enough. If you can have a device with the potential to restart a heart why wouldn’t you want one? If your child or loved one collapses is  a few minutes good enough? I really don’t think so. We felt there should be an AED at the pool. So between our donation, the board picking up a significant amount, and the AED grant, we were able to get one for the pool. We started the process in June and it finally arrived (grants sometimes take a long time).

We HOPE that it will never need to be used, but starting with the next swim season if anyone suffers a cardiac arrest at our pool they will have a better chance at survival because an attempt at restarting their heart will be immediate. We did this in Gabe’s memory and it is our hope that it may save a family the grief of losing a loved one.

In July Cary presented this sign, which will hang on the wall where the AED is mounted. Gabe loved the pool and it means so much to have his picture up there with a device that could save someone’s life.

 

 

The cemetery is one of those places that I never really thought I would frequent. Until Gabe died I had been in very few cemeteries. I thought they were kind of creepy and just weren’t somewhere I ever wanted to be. Once he died that changed. I spend a lot of time there now, and one of the things that comes with a grave is a vase. And that vase needs flowers.

At first I used live flowers. As long as I kept them watered they usually stayed pretty for about a week. But a week isn’t a long time. And replacing flowers every week is not cheap! So I went to the craft store and found a few bunches I liked. The first ones were white, purple, and green. I didn’t choose those colors for any particular reason- I just liked the colors. I bought enough to make two bouquets and we kept one at home and one in his vase, kind of a way to tie him to us. There were several bunches that I did that with, and I still have those around the house.

As the months went on we had some that were orange, blue, and white- to represent the colors of his famous shoes and the Gabe’s shirts. There was a rainbow bunch that was so colorful. At the start of the 2017 school year I made a bunch that was black and white. Those lasted for a while. Spring of 2018 he had a beautiful blue bunch, and I added a butterfly. In fall of 2018 I had a helper. He had no interest in going to the cemetery until that point, but he and I went to the craft store and picked out some beautiful orange flowers, and he picked a pumpkin decoration that reminded us of the Hokies colors.

As holidays came I decorated his headstone, usually just adding things to the vase- Christmas colored items or ornaments. The first year a friend added a wreath, another added a light, and another added a snowglobe.  Last year a friend added a grave blanket made of branches and bows. Today I created the arrangement you see at the top of this page.

For his birthdays he got balloons.  The first year was a balloon that had a 16 on it, and another with Dory from Finding Nemo, which was his favorite movie. This year we just added a huge balloon that said Happy Birthday.

It may seem odd-this ritual of bringing things to the grave of a dead child. But really it’s not. When that child is gone you feel the need to continue to do something for them. Visiting the cemetery and bringing these things for Gabe are one of the ways I stay close to him. It is one of the ways I can still do something for him, though he isn’t here anymore.

I don’t make matching bouquets  for our house anymore but I will continue to bring flowers to make his grave beautiful. He is still loved and still special, and his resting place will show that.

 

One of the things that is so hard after the death of a child is the holidays. From November until January these special days come that are focused on togetherness and family. After an intense loss, though, togetherness and family are both permanently and painfully altered. Holidays serve as such a painful reminder of that alteration.

Something I have had to do is realize that just because something worked one time doesn’t mean it will work the next time. Likewise just because something went terribly doesn’t mean it will again.

The first holiday season after Gabe died was brutal. We were in a lot of shock and were clueless about how to approach anything. We stayed home for everything. We stayed home for Thanksgiving, and home on Christmas. The time before Christmas was great though- some good friends gave us a few days at their time share. We went to Busch Gardens and Williamsburg, and it was wonderful to not be at home dwelling on the approach of Christmas. On the way home we celebrated Christmas with family, and that was difficult. Gabe’s absence was excruciatingly loud. He was such a joyful kid and loved opening presents. It felt like he had been erased from our family. We stayed a few hours and left, and it was a very sad ride home. The next day we mulled through Christmas at home just the four. We made the cinnamon rolls that had been a tradition since the boys were tiny. It hurt that there were extras cinnamon rolls. Eventually my family came to our house and spent the day with my then toddler nephew to bring some joy.

Last year was year two and I think we went into it feeling too ambitious. It was after all the second year, so theoretically it should have been better right?! We found that it really wasn’t any easier. We tried to go visit family but even the drive there was so painful. I drove through tears, feeling so wrong about going to visit family on a holiday without one of my children. We were tentatively going to stay two nights but even one was pushing it and we left the next day. I wasn’t ready. Not even close. The funny thing is I don’t remember much about anything else of the holiday season last year. It happened and we got through it, but I don’t remember details.

So here we are, another year to figure things out. We decided to stay home again for Thanksgiving. Just the four of us. I made a traditional dinner and my youngest was my kitchen helper (the role Gabe used to play). My turkey took forever to cook and I was in a bad mood. Partially because of the turkey but probably moreso because nothing is how it should be anymore. We haven’t even contemplated Christmas yet. It seems that we have to just decide things at the last minute and be OK with whatever feels right.

Part of the reason I write this post is for those who know someone who is hurting. As you go through this season filled with so much happiness realize that there is much pain. The songs on the radio (I’ll be home for Christmas, All I want for Christmas is you, and so many others) can be EXTREMELY painful yet they are everywhere. Merry, Happy, and family are the focus. When you are at that family gathering realize how huge that loss may feel to someone. When someone chooses to skip a gathering- for a year, or two, or 5- realize that the pain of seeing everyone else there without their loved one is just too much. And realize that as hard and stressful as the holidays are for normal people with no loss to contend with, it can seem impossible to someone who is grieving. Please understand that we may do or say things that seem selfish, or it may seem like a cop out to skip events, but for us it truly is about surviving. We will do it the best way we can, and we appreciate your love and patience as we navigate life with a very important piece missing.

When I think of comfort zones I think of coziness. Like sitting wrapped up in a blanket in my house. It’s hard to leave that place where everything feels warm, safe, and comfortable.

Recently I jumped out of my comfort zone. I should probably backtrack a bit. Before Gabe died I had contemplated looking into some sort of career change, and I felt drawn to health care careers. I looked at options at our local community college and thought just maybe I could do something different. I realized, though, that with 3 boys and the not so easy health things those boys had to deal with I couldn’t really go there. Not yet. So I set that aside and continued with life. Then Gabe died. My memory felt like it was erased and the smallest tasks seemed like huge obstacles. EVERYTHING was harder to do than it had been before. Day to day life took so much energy and focus that I just told myself I couldn’t even think about anything different. It wouldn’t work. And really it felt like it would never work. Like I would forever be in the exact place I was and nothing would get better.

As time moved on, though, my memory slowly started to get better. Daily tasks didn’t take quite as much out of me, and I started to realize that I couldn’t let the fact that my child died be the one factor that determined how the rest of my life would go. I couldn’t let Gabe’s death force me to stay in that comfort zone (although admittedly even my comfort zone was a bit uncomfortable and tainted with grief).

In early September I stepped WAY out of my comfort zone and I started volunteering in a nearby Physical Therapy and Occupational Therapy clinic. I knew I needed to get SOME sort of experience in a medical setting to see how I liked it, and I went to a place where I knew some of the people and where those people had helped me with my own physical pain a few years ago. I interacted with only adults (VERY far from my usual day since I work with children under 5!) and I really, really enjoyed it. I went in knowing NOTHING. Really, I knew nothing. It was extremely humbling and I’d be lying if I said I really didn’t feel cut out for it in the beginning. But I pushed myself a bit and kept it up. I had my last day about 2 weeks ago and I feel like I have grown more than I thought I could. I’m still fine tuning my path and discerning what’s next. 

I’m still not quite sure exactly where I hope to end up but my volunteer experience helped me find some clarity. I know that this process will be as S-L-O-W  as it needs to be- it’s not just change but there is grief mixed in that change which makes it challenging. Wherever I end up, I know that I am so grateful for the many hours I spent in that clinic with the amazing people who work there and the wonderful patients I was able to meet. I’m so thankful for the opportunity to step out of my comfort zone and begin to see what I may be capable of.

But if you close your eyes
Does it almost feel like
Nothing changed at all?
And if you close your eyes
Does it almost feel like
You’ve been here before?

https://www.youtube.com/watch?v=wPplKM1zJ8Y

Those words. I was in the car on the way to an appointment with my youngest and he was picking the music from my phone. There are some songs I haven’t listened to much since Gabe died, because it hurts. This is one. It was one of his favorites- Pompeii by Bastille (though I’m linking the Anthem Lights version-that was his favorite because of the percussion!) Those words just describe this journey so well. Here we are 2 years and 7 months since we said goodbye, and sometimes it really does feel like nothing changed at all. Sometimes it feels like he would be sitting in the car singing along, or ready to walk through the door at any minute. I think to others it probably seems crazy. I mean 2 years 7 months seems like such a LONG time! Getting close to three years. In that time one of our kids has moved from middle to high school. The other has moved from elementary to middle. I am looking at the possibility of going back to school (I’ll share about that when I’m ready), and my middle is learning how to drive.

A lot has happened, but it still feels like just beneath the surface everything is still the same. If I imagine hard enough he is right there. And I think this is why others don’t can’t understand child loss (and really I think very untimely spousal loss is probably the same way). To others healing should be further along because so much time has passed. To those not as impacted (those not living in the home) I might seem stuck in my grief. But this isn’t about being stuck. It’s about navigating this life- allowing my own happiness but also giving a certain respect to the fact that grief that impacts every facet of my life. It’s about being there for my surviving children and helping them navigate those same things.

So I will keep going. Moving forward each day in this surreal world that maybe one day will feel a bit less surreal, but for now at 2 years 7 months the surface is just barely scratched. But if you’re worried rest assured- I’m not stuck, I’m just grieving.