How does one share their deepest hurt and fear, and be able to articulate it so others can understand? That is a difficult feat. How can anyone understand? You can try. Your heart will hurt. Your eyes will fill with tears. While a few will look at their own child and for a moment, feel that fear and pain. Only for a moment. That moment dissipates because life goes on. Dinner needs to be made; activities to drive to; laundry to be folded. Just a moment because you are still able to see your child. You can still smell and touch her. You can stand in the kitchen and hear his giggles and that alone is safe and calming. It is impossible to really get it. Feel it. I really don’t want you to. Ever!
The day of diagnosis, our perfect happy world made a screeching halt. Our lives in a free fall knowing Madox’s life was no longer protected by us. As a parent, our job is to keep our children safe and alive. ALIVE. Sounds simple right? Feeding them nutritious foods; baby proofing the home; car seats until they could practically drive. That was our job. Our one important job. When the doctors said tumour, we sat there thinking “what did we do wrong?” “what did we miss?” “how could we not have protected him better?” In that instant, everything and everyone fades away. I wanted to scoop Madox up and run away from that new future we were just fed. This is where you will draw a blank when you are trying to understand. Of course you will cry or scream or fall apart on the ground. That is just human nature. The part you don’t know is what you would be thinking and how those feelings engulf your entire being. You think your heart has stopped beating because of the immediate and intense pain you feel. In that instant, your whole life is nothing you ever thought it could be. Which now is.
Thinking the diagnosis was the worst thing, you begin noticing your child lose mobility or speech. As a mom, I couldn’t fathom just standing and watching. Doing nothing. In the end, that is exactly what we did. What most DIPG families feel they do. It’s not that we didn’t try doing something, anything. Even if it sounded far fetched and unrealistic of it working, parents will try it. WE tried it. But it didn’t matter. Nothing mattered. Instead we watched Madox go from an active happy child, to beginning to shuffle his left leg and not being able to make a fist. We told him to try this medicine or that, all tasting horrible. Madox would always agree, never putting up a fight because he wanted to get better too. Knowing how badly your child fights to stay alive, killed me everyday. A fight we knew was futile.
How can I paint the picture of the days leading up to his death? No one wants to know or believe a child suffers or is in pain. Yet it happens every day with different cancers and illnesses. It’s easy to turn away from the pain you see on tv or what you read in the paper. It’s “not my family” so it’s hard to really grasp the finality of it all. When you wake up, you family is intact and exactly how it was the night before. When we wake up, we see the torment in the mirror. We can’t shake the visions in our minds of Madox’s last days. The laboured breathing. The unresponsiveness. The crying out in pain. Unless you witness a child dying, you can never understand. It will never leave your memory no matter how hard you try to block it out. Standing helplessly watching someone, a child, dying. A life that was too short. A life that deserved so many more years. A life that didn’t deserve this ending. It really numbs you. One thing I wish I had done, was to hold Madox in his last hours. He was in so much pain, we didn’t dare hold him in our arms. We couldn’t put him through more pain just to ease our hearts by holding him close to us. We were able to snuggle up close to him in bed, kissing the back of his neck or cheeks. But I still ache to hold him. Have his arms wrapped around me tightly, chest to chest. We weren’t able to hold Madox tightly or closely for a few weeks before he passed due to his pain. I still think about that, feel guilt about that.
We did all the right things. We were thankful everyday for the life we had. The love we had. Yet here we are, without our son. I feel so much guilt that I should have been able to stop it, prevent it. I know in my mind there was nothing I could have done. In my heart, the guilt takes over some days and the tears can’t stop flowing. So much guilt. But you couldn’t understand that. I wish you never will.
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