Loose Boards

Early on, in my grief journey, someone told me about “Loose Boards.” When you are in the store, and a song comes on that you weren’t expecting, that’s a loose board. When you are at a place that you had gone with your loved one and the memory comes flying back, that is a loose board. When you are cleaning and you find something that you hadn’t seen in a long time, that is a loose board.

Loose Boards can smack you down so fast.

This morning, I was cleaning the laundry room, of all places. When I moved the detergent, I found Jackson’s wallet that his friend Mya made for him. Inside, it had his first library card.

It’s these moments that can bring you to your knees multiple times in one day.

It’s when you are faced with the reality that your child will never use his wallet again.

He will never go to the library again.

In those moments, all of the memories come flooding back. I think back to all of the times that we went to the library together. We would visit the library weekly so there are a lot of memories attached to something so simple.

Then I think about his friend Mya, who made the wallet for him. She also had cancer but she beat it. We met her at Little Gym, while she was fighting cancer and I told her mom about St. Baldrick’s because she didn’t know about the organization. I shaved in honor of Mya the year after we met her. And her family started to do fundraisers for St. Baldrick’s. And Jackson shaved his head at their event raising $1200 in one night. This was 4 months before cancer took him from us.

It’s crazy how something so small can de-rail you.

As a bereaved parent, it takes so much to get through one day without your beloved child. It’s almost unbelievable how your mind can think about them every single second of the day. It’s like I have a movie playing in my head all day. It is nothing short of a miracle that I can accomplish anything with as busy as my mind can be. And add parenting a busy, demanding 4 year old all the while, it reminds me why I don’t have much to give when the day is done.

Some may see this as a sign and maybe it is. These signs are a mixed bag for me. I love to think about Jackson saying hello to me but I want him here and I can’t have that. I’m hopeful that when the grief is not so raw that I will be able to see these loose boards as signs but for now, it causes me so much pain.

Avoiding Pain

While I am so thankful for my community and their willingness to always step in while I’m struggling, the pain of losing a child can not be fixed. I have been extremely busy since Jackson died (some by my choice and some not.) Having a very active 4 year old has forced me to get out of bed every day and tend to his needs, which are many, he was needy to begin with. Holding events where I have asked my community to lock arms with me has done wonders for my heart, but none of it change the fact that my 7 year old son is gone. It has been a bit of a distraction and I will always acknowledge that it has been purposeful. I haven’t really wanted to face the truth.

He was the boy who made me a mom.

I had 12 hours from the time I was told that there was nothing more the doctors could do until he took his last breath. We never have enough time with our children but trust me, 12 hours is not enough time to say goodbye. Everything has been going 100 miles an hour since he left this earth. I have not allowed myself much time to slow down and tend to my grief.

What I have learned over and over again is that grief is like an angry monster and if you don’t tend to that angry monster, he will come and slap you down. Well I’ve been slapped down. Being forced to not do the things that are good for my heart and soul and having zero control over it, puts me into a bad place.

I spoke to another mother who lost her son suddenly and it put me back into the place when I was thinking about Jackson’s brief but tumultous hospital stay. I could not fully process everything that was happening because it was happening at the speed of light. I could barely sit down before another doctor needed to come and talk to me. And on top of that, we were making arrangements for Ivan to be cared for. Oh and I had just given birth too so I was dealing with postpartum issues. I have literally had no time to process. And now I have all the time in the world and I am terrified. I don’t want to face it.

I will never hear my son’s voice again.

I will never get a 30 second hugger from my boy again.

I need a 30 second hugger from my boy more than anything right now.

I will never go to another school event for Jackson and I have never felt more pride then when I saw him in his element. My son did not get to go to 2nd grade, he didn’t get to turn 8, he didn’t get to lose a tooth. He will never kiss a girl, have a broken heart, get married or give me grandchildren. I have chosen not to focus on those things but don’t think for one second that I don’t realize it.

Today it’s hard for me to focus on the gifts, even though they are many. Today, I am being forced, against my will, to face what I haven’t wanted to face. My 7 year old son is dead. He died. I will never see him again. And I hate everything about it.

I will get back to doing the things to feed my soul and help me to feel better. But today, no one can fix the pain I’m in. I just have to face it. Jackson Julius Schmitt, I will never be the same without you because loving you and raising you for the 7 years I was given, were the greatest 7 years of my life. I need strength and prayers to get through the years of giving your brother the life that he deserves. He didn’t deserve to lose you but I will do my best to give him what he needs. Mommy’s heart is shattered. I cried myself to sleep last night. This hurts worse than anything I could have ever fathomed having to endure. There are things you can do to help with physical pain but nothing helps with the pain of losing the apple of my eye, my pride and joy, my precious baby boy. You have been and will always be my baby and I was the only woman you ever loved and that is such an honor.

To all of the women who have lost children, my heart breaks for you. This is not how it’s supposed to be. I hope you have a good support system who can love you through this pain. If you haven’t lost a child, consider yourself fortunate. You could never fathom this kind of pain. Think about how much you love your child and multiply it times a zillion, then you have one iota of an idea how much this hurts.

Social Isolation While Grieving

I know I’m not the only one experiencing anxiety related to current affairs in the world, but I would imagine that my reasons are a little different than the average persons.

I am a self-proclaimed control freak. It’s probably why I don’t like to drink or do drugs because I am not in control. Losing Jackson was the ultimate “I have no control” over anything. Having a tidy home is something I can control. Being on a quarantine with my needy, grieving 4 year old, who doesn’t understand his brother’s death or the Coronavirus is making me nervous. He is an extrovert like me. He needs to be around people. He likes to be active and doing our normal routine. I will enjoy some of the time we have together but I am not going to sugarcoat things and act like we are going to be baking homemade bread or I’ll be teaching him math and making crafts. That is not reality.

We will have time together and we will have fun but the thought of being home, and not busy, is terrifying to me. I have chosen to stay busy and do very involved activities to honor Jackson. They have been great therapy for me. I have also found a few other things that have proven to be therapeutic for my mental health and I will do them to the best of my ability. Having to face the pain that I’ve been somewhat running away from, well let’s just say it has me in a state of anxiety.

No one in their right mind would just sit in the pain of losing a child. Numbing your pain is something I have chosen not to do with substances but I have used events as a distraction.

I am in immense pain.

“The trauma of his brother’s death … is immeasurable.”

But I haven’t had the option to sit around and sulk and cry and wail. I have a 4 year old child who needs me for his security. I can’t be away from him for long without him experiencing high anxiety that I won’t come back. When we are at home, he calls out to me sometimes every 20 seconds (this is not an exaggeration) to make sure I am still here. This is a direct result of his brother being seemingly ok and then dead 6 days later. The trauma of his brother’s death, for Ivan, is immeasurable. And while I can logically understand it, it does not make it easy. I am not functioning on all cylinders and I have to CONSTANTLY reassure him.

I will do that.

I do that but it wears on me.

Honestly, I need a break from him for my own sanity. Sometimes I feel like I might explode with all of the different feelings and emotions that I experience.

Our story is crazy enough that it being shared on sites likes Yahoo and SheKnows. I want the story to be told. I want to raise awareness. I will shout it from the mountaintops that we need to raise awareness, but realizing that our story is that drastic doesn’t really feel great.

“…we need to raise awareness, but realizing that our story is that drastic doesn’t really feel great.”

So needless to say, I am entering a time of what could be profound grief. The uncertainty is hard for me to handle. Ivan is hard for me to handle. I am hard to handle. I try to keep my focus on the gifts and how we have helped but I can’t ignore the pain and anguish that I live with and probably always will.

Childhood Cancer is NOT rare

I’ve heard it said so many times that childhood cancer is rare and I don’t think that is true. It’s definitely not rare to me now that my son died of cancer. I knew of one other child that died of cancer and another one who survived it before I was involved with St. Baldrick’s. Then the first year I went to the local event in our area, I saw that it definitely was not rare.

Now that I am the part of an organization called Friends of Kids with Cancer which is an agency that helps families whose children are currently battling cancer as well as families who have lost children to cancer, I KNOW it’s not rare.

I truly believe it is passed of as rare as to not draw a lot of attention to the fact that the research for childhoood cancer is vastly underfunded. And the more I learn about it, the more I find out that it is also vastly under researched. My mom brain wants to know why. Is it because there is no money in childhood cancer? Is it because no one wants to talk about it? Is it because thinking about a child under going horrific, barbaric treatments that were not designed for children is too much for people to think about? I think it’s a combination of all of these things. I never thought speaking about childhood cancer would be something I would do but I know it has to happen.

There is so much attention put on breast cancer and now there are millions, if not billions, of dollars raised every year to go towards research. Because of this, a lot more women survive it. So how about if we move our focus to a different area of research? I will never understand why people aren’t moving heaven and earth to find a cure for cancer so that children don’t have to go through this. Children’s lives should not be cut short because people don’t want to talk about this.