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.


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.

Grief Landmines


Today for some reason the little things are on my mind. When a child dies there are so many things that are different. There a huge things like the fact that they are just not there anymore. There are so many ways life is drastically different. The family schedule should be much more packed-but it’s not. The van that we own is now really too big but was totally necessary before. If we ever wanted to move we would be able to look at houses with one less bedroom. Going out to dinner or a movie is less expensive, so are vacations. But they shouldn’t be. That creates some intense turmoil.

Then there are the little things. They are kind of like grief landmines. These are small things that jump out as I go about my day, things that sometimes make me smile and cry at the same time. Partially to communicate how sucky the death of a child is, and partially for myself so I never forget the little things, I’m going to share some that have come up recently.

Groceries are some of the biggest of the little things. Gabe had lots of favorite foods. Before he got his braces Raisin bran was IT. I am convinced if that was all we would let him eat he would. We went through 3-4 boxes a week. His day would start with it, he’d have it as an afterschool snack, then sometimes before dinner, and usually for dessert. And it had to be Post, but not the post that Costco carries. Oh, no. The flakes are different. So whenever I’m in the cereal aisle I still look at the Raisin Bran boxes. I wish I still had to buy it.

When he had to stop eating raisin bran, he switched to bread with Nutella. I know, it’s horribly unhealthy. But some battles aren’t worth fighting. So we always had Nutella. He didn’t eat it quite as much as Raisin Bran, but he ate it a lot. So much that we would usually go through several loaves of bread each week. Today this love of Nutella and bread was triggered a bit because I had to throw out a loaf of bread because it got moldy. That never used to happen. Ever. It always disappeared long before it got moldy.

Gabe also LOVED milk. We went through 5-6 gallons a week. He would often have raisin bran AND a glass of milk. And not a small glass. A big plastic cup filled all the way to the top. Buying fewer gallons of milk was probably one of the hardest things for me. It was like getting slapped in the face every time I went to the store. We should be going through so much more milk.

There are so many other things he loved that trigger sadness- grilled cheese sandwiches, pancakes, Eggo waffles, and A&W Root Beer, which he is lovingly holding in the picture above. Our good friend and neighbor Jean always had that on hand, he loved going to her house!

As a result of all of those little quirky food related things grocery shopping is difficult. Extremely difficult. I find I can’t focus, and it’s so hard to complete the shopping that I need to do. Some days this one task is harder than others. So if you bump into me in the store and I seem off- that is why. Because for a grieving parent to keep themselves pulled together to walk through a store filled with grief landmines is a very challenging task.

Thanks for reading and getting a tiny peek into my world.

Thank you notes

Thank you for being a bright light
during our darkest hours
as we said goodbye to Gabe.

We appreciate every prayer
and act of love shown by our friends.
We are very sad but we feel very loved.
The Chester Family

Oh, these thank you notes. We ordered them a few weeks after Gabe died, and they sat. And sat. And sat. In their box, first in the dining room and then in Gabe’s room. I eventually mustered the strength to write a few, probably no more than 6, and sent a few of those. There are still a few upstairs, written in their envelopes. There are still MANY upstairs not even folded, still in their box. And that is where they will stay.

I’ve always been HORRIBLE about thank you notes. Truly horrible. Just ask my sister. She is always great about sending them, but she has probably never gotten one from me. It’s not that I don’t appreciate what she has done, it’s that I’m horrible about the process of writing thank you notes.

After Gabe died it honestly didn’t even occur to me in the first day or two that some people would maybe expect thank you notes. My child had DIED after all. The death of a child isn’t a baby shower or party, it’s a horrible event. Horrible for many people but especially for the people living in the house with that child. The references to thank you notes came early- “you should write down everything you receive so you can thank people later”, “Have you written thank you notes yet?” “For weddings you have a few weeks but I guess you have more time for this”. Writing that out makes me want to use bad words. I may be doing that in my head right now, you can use your imagination to figure out what those words might be.

Once I learned of that expectation it created a new stress. One I did not need. I started keeping track of what people did as much as I could. I shouldn’t have been wasting my energy on that. I started to worry if people were waiting, hence the reason Doug and I carefully selected the card you see pictured above- with the tree with a heart, because of our son’s special heart. I realized soon that it would be almost impossible to get everybody. In those first 2 days alone people had cleaned our house, brought us meals, sorted the boys horribly messy playroom, and a friend I hadn’t seen in a long time dropped off a huge box full of disposable plates, silverware and other things that were such a huge help when dishes were the last thing on my mind. Others did landscaping out front, mowed our yard, came to visit, and of course my older sister immediately flew in from Hong Kong to help with whatever I needed. My younger sister came and brought my sweet nephew who provided comedic relief when we needed it. Over the next few days and weeks we received gifts, Rosary beads, cards, money flowers, plants, gift cards, surprises left on the porch, and honestly too many other things to write. But I remember it. Every bit of it. And Doug and I and the boys are thankful for every bit of it.

The problem here, though, is that each thank you note makes us relive horrible moments. The moments when I had watched attempts to revive my son that didn’t work. The moment when the doctor told me they tried but couldn’t save him. That moment when Doug and I left the hospital without our child. Planning the funeral (thankfully with a wonderful friend helping), writing the (very long) obituary, seeing my child in the casket. Those events are all mixed in with those wonderful things that people did for us. Because of that fact those thank you notes will probably never get written. Each one brings all of those painful things to the surface in a way most people can’t comprehend. Each wonderful, loving act of kindness is tied to a pain that can’t be described.

So if you didn’t get a thank you note (almost 100% of you), I’m sorry for that. If you feel you still need one even after reading what I just wrote, then it might be time to examine your conscience and motivation for reaching out to the grieving.

Now that I’ve said that, this is my thank you note. It’s a blanket one and it covers everything. If you did something, gave us something, visited, or any other thing that I didn’t mention- Thank you. Thank you for all of it. Know that we appreciate it and still remember, and probably always will.

And to anyone who ever loses a loved one- know that I will NEVER expect a thank you. In fact, I’d rather you not write one. I would much rather you focus on surviving and tending to your broken heart than writing a note just because someone, somewhere said it is the right thing to do.



At Least

*One of the purposes of my blog is to help people know what things are just not helpful to say to a bereaved parent. Many of these things can be downright hurtful. I know they come from a good place, but it is so very important to think about what you say before you say it. As I would say to my preschoolers “choose your words”. Would you want someone to say those words to you? This is one of those things. *

“At least”. It’s a short, simple thing that can be attached to many things. It’s something that I’ve come across time and again in this bereaved parent world that I am now a part of. I vaguely remember hearing a few “at least” phrases early on, but thankfully I was too numb to process it. The following are some examples that I have seen a few times:

-“At least you have other children”

-“At least you can have more children”

-“At least he doesn’t have to feel any more pain”

-“At least he lived a full life”


Those are just a few of the “at least” phrases I have seen. It makes my skin crawl every time I read those words or hear anyone speak them, when it’s in reference to a death but specifically the death of a child. There is no “At Least” in child loss. Ever.

I’m tackling this subject because I know that when a child dies people don’t know what to say. And sometimes things slip out that the person saying just doesn’t realize are hurtful. This is one of those things. I think during horrible times people often look for the silver lining. They look for one thing that somehow isn’t so bad. Something good to come out of a situation. But here’s the thing. During this specific, horrible thing- there is no silver lining.

Let me repeat- there is no silver lining. Leaving the hospital without your child, seeing their friends and siblings miss them, and seeing them in a casket. Well, there is nothing good about that. The fact that there are other children in the family? It doesn’t take away even one bit of the sadness for the one missing. The fact that a couple who lost a baby during pregnancy, stillbirth, or as an infant can try again to have another? It doesn’t take away the pain or replace the one that didn’t get to come home.

The fact that he won’t feel pain anymore? Yes that is a good thing, but I would much rather have him here, so that I could help him through those hurdles.  The fact that he lived a full life? He had so much more to live- driving, prom, college, graduation, and the rest of his life. Those things were taken. I love that he lived a full life but I would give anything for it to have not been cut short.

Are there good things that happened in the wake of Gabe’s death? Of course. We saw a beautiful community, friends and strangers who reached out to us,  and new friendships were formed. Those things are intertwined in the death of my son. That makes them all very bittersweet. I am so thankful for the love that was extended to our family. The fact is, though, that my child is gone. And none of the good that may come from his death will erase the fact that he is gone. No “at least” can make it feel better.



How many children do you have?

This question. This innocent question. It’s often a conversation starter, and it helps people find some sort of common thing to talk about. It truly is a great question for most. Until the worst happens. Then it becomes a question that you avoid like the plague.

About 2 months after Gabe died I went out with a friend and met a few people. One of them asked me how many children I had. I froze. And I said two. I said their ages and we talked a bit. I felt sick. I felt horribly sick. I wanted to leave. Eventually I excused myself and went to cry in the bathroom. Because I felt like I had slapped Gabe in the face by not acknowledging him. Because he is my child too. I don’t have two. I have THREE. But I was afraid of where the conversation would go. I think I was protecting that person from having to face the horribly reality that was now my life.

As the evening went on we talked a bit more and eventually she asked about my boys’ schools. And that’s when I mentioned Gabe. I told her where the younger boys went, and then I said that I had a son who was in high school, but he died. At that moment she knew who I was. I don’t really remember the rest of the night. I made small talk and eventually left. I will never forget that night. The first time I was asked that question.

As the months went by it would happen again, by another mom at the pool, by new doctors, by other people who didn’t know me before. I learned to not ask anyone that question- because it can be a painful answer for them and because it is usually reciprocated with the same question. As time as passed I have refined my answers and evaluate the situation. To the mom at the pool, just a few months after his death, I said “I have 2 here “(to me meaning at the pool). Now if asked how many I say three, and then tell the person that my middle son is — years old and my youngest son is –years old. Most of the time people aren’t really listening so they don’t catch that I said 3 and gave the ages of 2. If it’s a person that I know I will see again, or attends my church or other place where we will come into contact again I usually do the above thing with the ages and add that my oldest died at 15.

It’s never an easy question, and it ALWAYS makes me pause. There is a very complex amount of thought that happens in that short time of figuring out the best way to answer. What I have realized, though, is that I HAVE to say I have 3. Because I do. And I always will. I have also realized that while that person may be uncomfortable for a few minutes, I am uncomfortable always and probably will be to some extent for the rest of my life. My child will always be missing and that is an uncomfortable feeling that can’t be described.

So I will continue to say three. And maybe in the process I will help a few people feel a bit less uncomfortable about the thought of child loss, or even encourage another parent of loss to have the confidence to speak out so they can remind the world of the missing piece in their heart.

A gloomy day

This post might end up having a lot of rambling. But since it’s my blog I’m OK with that! Todays weather is a lot like my mood. Gloomy. Early this morning I realized that today is yet another significant anniversary- the anniversary of Gabe’s funeral. I remember so many details and for now they will stay tucked inside my heart and mind.

Today is a Sunday so we went to Mass. It was just my youngest and I, because my husband and middle son were away. I started to feel sad. Almost immediately I felt sad. Eventually I started to feel kind of panicked. I like sitting near the end so I can leave discreetly, but we were in the middle. I also realized that if I left I would be leaving my 12 year old to sit alone, knowing that his sad mom couldn’t stay. So I stayed. It took a huge amount of strength to stay. I cried, but I stayed. And I guess that is really what this journey is about – staying even though I’m crying.


The day after

Yesterday was the day. The anniversary of the saddest day. I tried to write but couldn’t come up with anything. Sometimes there are just no words. Everything is jumbled and mixed up. Nothing seems right. Actually, that kind of describes a tiny part of child loss.

Today is the day after. And I very vividly remember the day after April 8. That was the day everyone started to arrive. On a day when the best thing probably would have just been to sit quietly and try to absorb what happened the day before, it was anything but quiet. I remember it started out with a wonderful friend who came and cleaned. She cleaned my house. It was quite a task (I’m not the neatest person in the world). She made all of the clutter disappear and made room on the counters and table for the things that would later arrive- mostly food and flowers. Lots of food and flowers. Friends stopped by. Wonderful friends who talked with us for hours in the kitchen.  Family arrived in the kind of reunion no one wants. Especially when it’s because of a child. We got our first meal delivered that evening. By someone who is now a very dear friend and brought food for everyone, and gluten free things for me, and love.

The day after was the beginning of a week long receiving line. It was a non stop stream of people into and out of our home. We don’t often have visitors. It was difficult. It was difficult to see people make small talk when the most devastating thing had just happened to us. It was just difficult in every way. Everything about it. We felt loved but everything felt wrong. The loudest, most exuberant member of our family was gone and no amount of visitors could fix that.

I’m going to leave today’s post with this. It is a beautiful poem that was read at a Memorial service held in December of 2016 and it sums up what I just wrote. Thanks for reading.


What People Give You By Kathleen Sheeder Bonanno

Long-faced irises. Mums. Pink roses and white roses and giant sunflowers, and hundreds of daisies.

Fruit baskets with muscular pears, and water crackers and tiny jams and the steady march of casseroles.

And money, people give money these days. Cards, of course: the Madonna, wise and sad just for you, Chinese cherry blossoms, sunsets and moonscapes, and dragonflies for transcendence.

People stand by your sink and offer up their pain: Did you know I lost a baby once, or My eldest son was killed, or My mother died two months ago. People are good. They file into your cartoon house until it bows at the seams; they give you every blessed thing, everything, except your daughter (child) back.


Why this blog?

I’ve contemplated starting a blog for a while, since mid April of 2016. Why then? My son died. He DIED. My CHILD. And when something that horrible happens you have many feelings. Feelings that can’t even be named. They change in a split second and they take over every part of your life. I’ve been using Facebook as an outlet for those feelings but honestly these feelings are too complex for a short paragraph here and there (ok, a few long paragraphs multiple times each day!). So some of my sharing will transition to this blog.

Why is it necessary to share so much about grief? Because child loss is a taboo subject. It is something that no one really wants to think about. The awareness that something so devastating can happen in a split second is so terrifying. But because people don’t want to talk about it those who have lost children feel isolated. It’s hard to handle a type of grief that is rarely mentioned. If it is discussed more, others will slowly be able to handle a friend or acquaintance saying “my child died”, or “I have a child in Heaven”, or “I lost a baby”.

Why did I choose “What I Can’t Control” as the name? It all comes from a song. It is taken from the opening lyrics of a beautiful song. “All of Me” is by Matt Hammit, and Matt Hammit is a heart dad. I am a heart mom. My son Gabe (the one who is in Heaven) had a Congenital Heart Defect. “All of Me” is about loving someone who could die, and that is the journey of a parent of a CHD child.

“Afraid to love something that could break

Could I move on, if you were torn away

And I’m so close to what I can’t control

I can’t give you half my heart and pray He makes you whole”

Those lyrics have been floating around in my head for as long as that song has been around. What I can’t control- well really life is about that. That was just highlighted in the most extreme way on April 8, 2016. I’m having to move on, as he was torn away.

This blog is about the moving on part. Or the moving forward part. As I continue to navigate the rest of my life with 1/3 of my boys in Heaven.

So welcome, I hope that everyone who reads this will learn a bit about grief and about finding the strength to continue when the unthinkable happens.






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