Food related quirks

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.

So Wrong

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.

I’ve Learned

Three years ago on this day life changed. It was going one way and then sometime shortly after 4 PM it took an awful turn. It was completely shocking and devastating. Now that I’ve been on this journey I’ve learned some things.

I’ve learned that I’m much stronger than I thought I could be. It takes an immense amount of strength to even get up in the morning (especially in those early days and months) when you remember, every single morning as you wake up, that one child is no longer here.

I’ve learned that my children are extremely strong. They had so much trauma that day and continue to overcome it. I know they miss Gabe so much yet they keep moving forward.

I’ve learned that most days are good, some even great. Gabe is always on my mind. ALWAYS. But I go about my day and do what I have to do.

I’ve learned that the only ones who understand this particular loss are those who have been through this particular loss. All types of loss are different. I can’t understand what it’s like to lose a sibling or spouse, and those who have been through those losses don’t understand mine. And that is ok. I lean more on those who unfortunately “get it”. Compared to those on this journey I’m pretty appropriate in my grieving where I am right now. Other child loss parents have communicated that it takes YEARS to really comprehend and begin to clear through the rubble, but those who have not been through it don’t seem to understand this. I think some are starting to panic that I’m not better yet. The funny thing though is that I don’t really think I’m doing bad. I am caring for my boys, my house (OK I’m not doing so well there but that’s nothing new!), keeping marriage going, and I have a VERY demanding job caring for 12  children between 11 months and 5 years. I’m also taking a class that has tons of learning and memorization- and I have a high A. Not only am I not doing bad, I think I’m doing pretty darn well.

I’ve learned that my grief is appropriate for ME. And that I’m exactly where I need to be. In the words of a children’s song: Can’t go over it, can’t go under it, can’t go around it, have to go through it!

And I’m learning how to do just that.

Luxury

**Disclaimer: I hope this one isn’t taken the wrong way by anyone who reads it. I write so people can get a glimpse of what it’s like to live with a child missing, but I hope that those who have not been through it never have to understand what it feels like. I don’t want anyone to feel bad because you don’t get it. I hope you can stay blissfully unaware**

Today was an interesting day. My wonderful husband did our taxes yesterday (Thank you wonderful husband!!) but there was a tiny error so he got an e mail saying it was rejected. This led him to call me this morning to ask for our boys information, which led me to look in our important papers file. I found the information that I needed. I also found this:

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And the Police report from that day (which I didn’t take a picture of), and funeral home papers, and also this:

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From a Mothers day card when he was small. I love the GIANT comma, and the fact that even though he wrote that around age 4 or 5 his handwriting was so distinctly his, and similar to how it was at age 15.

After that morning of finding those grief triggers I went out with my youngest to do some grocery shopping. I hate grocery shopping. I hated it before. I hate it on my best days. I really hate it on days when grief is already triggered. I felt like I wasn’t myself, moving around in a cloud. I felt unrecognizable. I saw another mom from the heart world, talking to someone, and I knew today I just couldn’t stop and chat. It would have put me over the edge. Then I had to go to another store to get the rest of the groceries. I sat in the parking lot for a few minutes, almost too exhausted to go in. Because grief does that sometimes. So we sat, and I gathered myself and we went in. The rest of the day was rather unproductive, I just couldn’t focus on much of anything.

In the evening I went out with a couple of friends and this is where the luxury part comes in. As we were finishing a group of firefighters came in. Immediately I wondered if any of them were on that call on April 8, 2016. If any of them tried to save my boy. Then they got a call and immediately left. After a few minutes they left the fire station (the restaurant was right next door) in their trucks with lights and sirens. And I realized that most people have this wonderful luxury. They don’t have to associate the death of a child with firetrucks. Most people don’t even bat an eye in a situation like that. And that is a luxury.

There are lots of different things this applies to. When I’m irritated that my husband is home late-that’s a luxury- because someone else has had to bury theirs and would do anything to have the luxury that I have. Even when Gabe was growing up I saw it in the world of having a child with a serious health issue- I would have loved to have the luxury of a first ER visit being something minor rather than a diagnosis of a complex heart defect. Having a healthy child is a luxury.  I’m having trouble thinking of other examples right now in my grief brain fog, but I’m sure those reading know what I mean. The thing about this is we don’t realize that they are luxuries until that luxury is gone. I didn’t look at firefighters or firetrucks that way until my child was gone. And now I can’t see them and not think about that day.

If you don’t understand what I’m talking about, or this is the first time you have thought of these things- be thankful and appreciate that luxury.

Today had some rough spots. Tomorrow is a new day.

 

***Gabe would have turned 18 on March 20. I didn’t blog that day, as we tried to keep busy. I feel kind of guilty for not writing something on his birthday. Being a grieving mom is hard.***

Clockwork

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. We 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 wife, 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**

 

He was here, he was really here

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.

CHD Awareness. What now?!

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.

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