Then and Now
Many times throughout the year it feels as if I walk through life in two worlds: the past and the present - this is one of those times.
*This was my journal entry on Caringbridge.org on February 26, 2010.
Thank you to everyone that came to see Nicholas for his birthday celebration! Nicholas enjoyed seeing each and every one of you. The thoughtfulness and caring so many people have shown him is just what he needs to get through some of his tougher days, and it helps the rest of us too. You are all true and tremendous blessings in our lives.
*February 27, 2020 should be Nicholas’ 24th birthday. In 2011 we celebrated his 15th birthday early because the day after his birthday Nicholas was admitted to the Bone Marrow Transplant unit for the final phase of treatment before his stem cell transplant. We had no idea that it would be the last birthday we’d celebrate with him...although we continue to remember the day of his birth even though he isn’t here, it’s painful for each of us in different ways. Suffering instead of celebrating.
Every day this week Nicholas had cranial radiation. Since it was February recess for the rest of our crew we took the opportunity to spend a few of those nights in Rochester instead of driving back and forth each day. Though there were protests from the peanut gallery of that being corny…everyone did enjoy being together! We went to The Cheesecake Factory for the first time, did some shopping at the mall and we went to the movies. Nicholas appeared to do well with the radiation, but did have some headaches and nausea. He has also been extremely tired.
*I would find out in a few short days how terrifying radiation actually was for Nicholas. It breaks my heart knowing now the anxiety and panic those sessions caused my poor boy. It seems we tried to pretend to live our normal lives during those few days, with the ludicrous exception of Nicholas having to receive daily radiation treatments! And the memory of our “stay-cation” in Rochester is one that each of us now holds very dear.
On Monday, Feb. 28th Nicholas will be admitted back into the hospital. He will have 5 days of full body radiation- twice a day. Next weekend he will get his last chemo treatments. Thomas then comes to the hospital to receive his first injection (in a series of 5) in preparation for the allogeneic stem cell transplant. After the 5th day we will be at Day 0- Thomas will have his stem cells removed and they will be given to Nicholas later the same day.
As of March 1st Nicholas has been fighting this battle for 6 months! Some days it feels like he was diagnosed just yesterday and others it seems like it's the only life we’ve ever known. We know the challenging journey is not over yet.
As I pray, I have to believe and trust in God with all my heart. “Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” ~Philippians 4:6-7
*Birthdays were highly anticipated as our children were growing up, as most are. Kovaleski birthdays would start off with one present first thing in the morning, even before school. Family parties were a must and the birthday boy or girl picked the main course and the cake. We loved getting everyone together to eat and celebrate! Nicholas always chose my sauce, pasta, Aunt Lori’s crab/artichoke dip and a homemade ice cream cake that his Dad usually made. It was always so much fun being together, and the laughter- oh the laughter; how we miss it.
We stopped celebrating birthdays after Nicholas died, not intentionally, but it just didn’t feel right. Thomas, Michayla and Matthew began to quietly tiptoe into the next year of their lives without much recognition and definitely no fanfare. I don’t know if they thought they should approach it that way or if it was too difficult to acknowledge they were getting older, but their brother wasn’t. Maybe they were trying to make it easier for me. Looking back I wish I hadn’t allowed them to do that, but frankly I was so knee deep in my grief that I was relieved. (T, M & M- I hope you can forgive me.) It’s not that I wasn’t beyond grateful and thankful that they were still here living and growing, but every ounce of life they were living, Nicholas was not. Everything was just. so. hard.
Ironically, the only birthday we continued to honor without skipping a beat was his. It took time, years in some cases, for each of us to understand that it was okay to celebrate our own lives even though Nicholas lost his.
February 27th is still Nicholas’s birthday to me. I long to know who he'd be, what he’d be doing and if he would be living the life I thought he was meant to live. I think about the relationships Nicholas would now have with his adult brothers and sister and what great friends they would be- and his relationship with his dad and with me, it breaks my heart in so many ways to not have him here...sometimes it’s just unrealistic to expect myself to always find blessings or a silver lining in a life that can be so completely unfair. Sometimes I just want to rage at God and the universe - WHY my child, why?!?
I am a mother who has buried her child, I am allowed to feel these highly emotional times in my life. When my ocean of emotion subsides, I will know that I do not have to apologize for my feelings. I will know that life is an endless journey of learning and relearning life lessons. I will know that the reality of my life is that every integral part of me has been affected by the death of my son, as well as by the life of my son. I will know that remembering, honoring and celebrating Nicholas for the rest of my life is a grace I have been given.