Unlabeling my son as the child that passed away

I want to unlabel my son as the child that passed away, let me explain…

I’m going to share my story with you. Not a story of myself, but of my beautiful son Patryk Alexander. I feel when the death of a child occurs the stories become shadowed by labels. Patryk will forever be labeled as the young five year old boy that passed away. I am forever labeled as a grieving parent. We must go beyond those titles and define our story not based on how we leave this world, but rather for the things we have left to the world.

From the moment I met Patryk he never liked to sleep. He was a happy baby despite never sleeping or eating and having reflux. He loved engagement, eye contact, snuggles before he quickly would start moving and grooving again. As he became a toddler it became almost impossible to contain him, he was always on the go. Patryk lacked judgement for his own safety at times because he was all to consumed with having fun and enjoying every single second. He did nothing without excitement and almost always with a huge smile on his face. The only exception was when you were putting him into a car seat when he was a toddler. When I say he hated to be contained I truly mean it. I can remember the times just sweating, battling my child to not run from me in the parking lot. He just wanted to go go go. I was exhausted 24/7  and also most of the time too busy running after him, I didn’t realize how exhausted I was. I think Patryk’s excitement for life helped to give me energy. I thank God for having him when I was just nineteen years old, I don’t think my 32 year old self could have sustained all that energy day after day.

Everyone out of curiosity wants to know the “How” and “Why” surrounding the details of a child’s passing. It’s natural as humans to have this curiosity, but I also would like to add something to that. Ask that parent how the child lived too. Asking what their favorite things were, what that child’s favorite story book or movie was. Just don’t stop at the story of how they passed because those are not the things the parents want to share, the death is such a small part of who that child was. Did the child have a special nickname? Patryk’s was Choo-Choo and there is a funny story behind that…

Patryk loved Thomas the Tank Engine so much that’s what his undies had on them. Every time he would run up the stairs I would be right behind saying choo-choo and pinching his cute little behind. He loved it, giggling and smiling as he quickly steam engine style ran up the stairs. One day he said to me when we got up those stairs “Mommy I’m a choo-choo,” I replied, “Yes you are,” and from that moment he was my Choo-Choo. A name he loved and I forever can’t get out of my head those little choo-choo engine undies. That sure would have been a great nickname to explain to a future wife one day lol. Patryk will forever be five and forever my Choo-Choo.

When Patryk was two he became ill, started not moving so quickly and this prompted all of the future doctors appointments and diagnoses that were to come. Patryk was not the kid that wanted to be slowed down so I knew something was wrong the morning he had trouble lifting his head after awaking. The treatments; well they included big doses of IV steroids and if I thought Patryk was rambunctious before, boy was I in for a surprise. This child would run circles around me, but it also never changed his bright spirit or his attitude towards life. With the insane amount of drugs being pumped into my sons tiny body he still was so loving, so enthusiastic and always grateful. I’ve never seen such spirit in a child. Most know that if you came to our home Patryk would always be there to greet you. Mostly jumping up and down excitedly as he told you to take your shoes off and come and play. He was always ready to play with anyone, any age, and loved everything. You seriously couldn’t find a sport or game he did not enjoy. Multiple times I would catch him having conversations with adults of all kinds, one being our next door neighbor. He loved everyone. I don’t mean just talked to everyone, he held onto every word anyone ever said and knew names of people whom I couldn’t even remember myself.

Patryk loved school, loved his teacher, he loved his friends from school so much that the teachers had to remind him we don’t kiss everyone Patryk. He loved life and I think all of those hours that he never slept during his five years he was just trying to fit in as much as possible. I complained, I hated that I never slept. Now, I miss those stinky feet kicking me in the face. More than ever I miss those moments were I would wake and he again snuck into my bed. When I woke he always kissed, hugged and told me he loved me. I always knew I wanted to be a mother one day, but this child gave me so much more than I ever anticipated. Becoming a mother to Patryk has been the greatest gift of my life. He taught me to always be grateful, to always be forgiving. That life is not about the IV infusions, doctor appointments or tragedies, its about the good in between the ciaos. He taught me to survive through the turmoil, he is the reason I have not given up in this world.

Patryk’s life has ended, and there is so much untold, but what is captured here is a bit of his story. This story is unlabeling him as the child that passed away. He is, he was the child that lived. Forever I will live on to share as much of Patryk’s spirit as I can, I feel as his mother who was left such a gift that it’s my job, but also responsibility. Next time you hear that a parent has lost a child know it is normal to be curious as to how the child passed, but do not forget to ask about how they lived.