ONE YEAR ALREADY?

One year ago, I was your “typical” working Mom. A Mom who rushed from work to my son’s countless activities, I read his hw and teacher notes at every red light. I was the Mom who packed her weekends with a bunch of activities to try to make up for lost time. I was the Mom who at many times thought she was failing because she wasn’t involved in the PTA, couldn’t volunteer at every school event and the mom who had her son at daycare after he just spent 8 hours at school. One year ago that all changed and I was no longer “that” mom.

The cancer world has a name for me. A Momcologist is what I am; I am no longer just a “mom”. As much as I try to remove myself from being a cancer mom, I know that will never be the case. The anxiety, fear, pain, strength and pride that I now carry, will always be with me. I can deny that I am broken and instead slap a smile on my face and keep chugging along like everything is great. It works most of the time, but then I have days like today. A day where every little move AJ makes, I analyze, critique and question. A day like today, where I look at his face and just stare at his amazing smile. Maybe today is worse than others because it marks the 1-year mark of AJ’s diagnoses. “Ms.Lindner, the neurosurgeon in on his way to come speak to you” is the sentence that would change our lives forever. I knew the words “ I am sorry, your son has a brain tumor” would come out of the doctor’s mouth. What I didn’t know was how much those words would change me…

Most people calculate and compare time to important milestones in their life. Weddings, births, school years, graduations and the list continues. As parents, we love to look back and see how much our child has accomplished and how much they have grown. My memory will now always be skewed. I no longer compare time to AJ’s first day of kindergarten or by his birthdays. For now on I compare time to today, March 31st.

I wish I could look at old pictures of AJ and feel pure happiness. Pictures from a few months prior to his diagnoses, I over analyze. I stare at his eyes and try to see if they showed any signs of tumor. I cringe that in almost all his pictures I see one or both of his eyes, glowing. I know now that was a sign of a brain tumor. I look at those pictures and grieve the child I have “lost”. My amazing happy son is not that amazing happy son I had a year ago. He is different; he is damaged in many ways, yet a lot stronger, braver and now mature way beyond his years. I tried to shield him from everything the best I could, but this was his battle and I couldn’t change that.

One year ago when this villain struck his body and I had to choose which weapon I would give him to fight with. I spent hours reading every case study, talked to oncologists from every corner of the earth trying to figure out the best weapon of destruction. I had to have faith that no matter what protocol I selected, he would become the strongest little boy and fight this villain to its destruction.

We leaped into the cancer world unknown of what would be around the corner. Days, weeks and then months went by and we were fully embedded into the cancer world. There was no time for second guessing treatment plans, regrets or a pity party. The hospital became AJ’s home; his real home was just a distant memory. I became fluent with medical terms and everything cancer related. AJ was no longer learning math and site words. Instead he learned the names of all his chemo and how to flush his lines. Instead of his mornings consisting of the pledge allegiance at school, his doctors woke him up for morning rounds. He always asked what his counts were as and they performed his daily neuro and general assessment. My past life was no longer relevant. I no longer had anything to talk about besides cancer. I had no idea what was going on in the outside world. It was like we were dropped off on a distant island. Although this island, was not surrounded by warm glistening water and palm trees. Instead it was filled with amazing little bald children who ran around with IV poles glued to them at all times. It was filled with nurses who became family and doctors who became miracle workers. Some days were filled with anger and sorrow and other days with laughter and smiles. Time seemed to stop and we never thought about our “old home”. I knew that anything could happen and that our “old home” might always be a distant memory.

Then what felt like a jolt from space hit us, we were thrown back to the real world. Did my son really just destroy this villain? We had to adjust to our new life on the outside, where majority of the people did not understand us. I had this amazing bald little boy who was so excited to start living again. People stared as we did our normal target runs. People at Starbucks always gave him free goodies and random people came up to him just to say how amazing and strong he is. Meanwhile, his body was still fighting a fight. His immune system still at zero, playing catch up with school work, friends, and getting his strength back was a lot of hard work. Slowly everything about his old life was coming back to him. Meanwhile, my anxiety was at new heights. Chemo was no longer protecting him from a relapse, his hearing and vision loss, new cognitive and developmental delays, homeschool and ensuring his happiness was always on my mind. Seeing him play basketball on a team for the 1st time brought tears of joys to my eyes, but I also noticed his gait when running. I noticed that he couldn’t hear directions while on the court. I noticed that he doesn’t have anything in common with the other children. He doesn’t know what the new “hottest toy” is and he can’t join in on the conversation about the schools big holiday party. Instead he was just happy that he no longer has to get a neupogen shot and he can take a real shower without having to worry about getting his lines wet.

The jolt I felt when we left the hospital is the same jolt I feel today. Today is not only year since he was diagnosed but he is almost 6 months post transplant. 6 months chemo free, 6 months of being home and 6 months of learning how to keep on pushing forward in this gift we call life.

Today our visits to our oncologist are less frequent but are substituted with numerous specialists who are all trying to unravel the damage that was left behind. Hospital stays are now rare. His hair has grown back and he even needed a haircut! We can finally walk through the aisles of target without stares. From a distance he is no longer the cancer kid. He still struggles in certain areas but has leaped over mountains in many. MRI results, seizures and long term side effects will always be a concern. but like I always say “Today he is ok and happy, so we are doing great”.

The Momcologist in me will always worry that one morning I will wake up and find ourselves in the same spot we were one year ago. AJ talking about his friends who passed away with such ease and normalcy will always leave me heartbroken and numb. A stomach bug will always make me want to rush him to the ER for an MRI. A headache will no longer just be a headache and a limp will always have my heart skip a beat. This year has been a tough one but I will never say the worst one. I am a different Mom then I ever imagined myself to be. I am now a broken, a deeper lover, stronger Mom and I am strangely grateful for that. I am now a mom to my own real life superhero and nothing can be better than that ❤

AJ’s Highlights

***AJ took an interest in playing soccer. Although he has trouble keeping up at times, he always has a smile on his face and never quits. I know it takes a lot out of him because playing a 20-minute game leaves him limping for the rest of the day.***

***He started swimming lessons again to gain strength for surf camp this summer.***

***He also requested a pull up bar for his 7th birthday, which he uses everyday and probably does about 50 + pull ups a day. Going back to gymnastics is his next goal, which will be achieved soon. ***

6 comments

  1. Thanks for the updates. Aaron came a long way a lot of prayers were sent up for him and I know in my heart that everything will be alright. Stay positive and keep the faith, your son is a superhero and you are a supermom.

  2. I am so happy to hear that today is great. I continue to pray that you and Aaron have amazing days ahead. You are an inspirational Mom, God Bless you both.

  3. I am so proud to be a friend of Sarah and AJ. You both make me want to fight too.
    Love you both.
    Aunt Linda(your biggest fan)Cat Woman!!

  4. It’s hard to believe that I just watched him swimming, going to basketball games and spending so much time on his pull-up bar. I am so thankful for our good fortune that Aaron is with us. Everyday I try to come up with ways to make him happy. I love when we play WWE & Superheroes.

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