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.
Not So Super-Bowl
Leukemia was giving Nicholas a run for his money. Nicholas started the new year of 2011 recovering from pneumonia, and trying with all he had to rid his body of the residual leukemia cells he just could not shed. Once he could finally reach 0% leukemic cells the doctors would proceed with the next item on his protocol- his bone marrow transplant. We already knew his brother Thomas’s cells were a “perfect” match. We were scared, but optimistic as we had a renewed hope of Nicholas being cured.
We were in a bit of a holding pattern, but it was a waiting game that allowed Nicholas (and me) to remain at home for a considerable amount of time. We had found a balance between ativan, zofran and lorazepam for many of Nick’s side effects and what could be taken along with his numerous chemotherapy medications including asparaginase, vincristine and methotrexate. Weekly trips to the clinic continued, but in the meantime some of life seemed normal.
Nicholas was able to watch a few of his swim team’s meets, attend a spaghetti dinner or two and even get out and see a few friends. One of those friends was Ben Kirby. Nicholas and Ben were friends at school and through scouts. They didn’t really hang out at each other’s houses, but when going to friends they often ended up at the same place at the same time. They had many things in common including their genuine, good to the core souls, love of life, family and friends.
Ben and his dad, Dennis had heard about Nicholas’s visit to WBEE station and how it was a fabulous time, but that Nicholas didn’t get to go on the air. Mr. Kirby had a friend that did a weekend morning show for WHAM 1180 and he arranged for Nicholas (and Jay) to go visit and be a guest on the show. Nick was scheduled to be on the show on Super Bowl Sunday.
Since being at the BEE, Nicholas caught the radio bug and was thinking about sports broadcasting as a career option so he was really excited to get to the studio and be “on air”! As well as he’d been feeling lately, he also had plans to watch the Super Bowl at another friend’s house and maybe even spend the night, which would have been a first since being diagnosed.
The Kirbys picked up the Kovaleskis before 6:00 that Sunday morning. Jay was equipped with all possible medications for every possible scenario I could think of, but Nicholas was just so excited he didn’t want or need any of it. They made it to the station in good time- since not many people are on the roads at that hour on a Sunday. They got a bit of a tour and were introduced to Mr. Jim Salmon. Jim explained how the morning would go- at the end of each segment they would bring Nick in and he’d get a chance to talk and answer some questions. Mr. Kirby was sometimes a guest so he participated in the conversation too. Nicholas told the story of his cancer with a brevity that let everyone listening know that as far as he was concerned, he’s “got this”. Nicholas tried to get Ben to join in, but Ben found more pleasure in watching his friend in the limelight. During news segments Ben and Nicholas played pool in the green room area and found lots of opportunity to laugh together creating special and lasting memories.
A play-by-play isn’t necessary for you to understand what a special day this was for Nicholas, but because our supply of memories is limited, somehow chronicling every moment is a need I’ve had since the day he died. It’s as if I’m searching for proof that my son’s life was well-lived and that he was happy.
After the radio show, Nicholas went home. I was happily grocery shopping for all “the snacks” the rest of us would munch on at home during the Super Bowl. Spending the day together was long awaited and each of us was counting on it for our own needs and reasons. Michayla and I were ready to spend the day preparing all the goodies and having some desperately needed girl time. My girl missed me a lot these days, she understood her brother needed me, but it was still hard not to have our time too.
Getting ready to check out, my cell phone rang and it was Jay. I answered, thinking he was going to add to my list, but he wanted to know how soon I’d be home. I was still calm when I asked what was up, but that quickly dissipated as he described to me how while the boys were playing video games Nicholas suddenly felt his left side go numb. His left arm was dead weight and he couldn’t make it move. His speech was slurred and the left half of his face was droopy and unresponsive…
Had I not already been in the checkout line, I would have left my grocery cart and run from the store. I held it together, however; Jay said he called Dr. Jeff (Nicholas’ oncologist) and he wasn’t sure what was happening or why. Nicholas was lying comfortably on the couch and wasn’t incoherent or unconscious. I just needed to get home as soon as I could.
When I arrived back at home Nicholas seemed a little more himself, but we loaded him into the car and we headed into the hospital. Nicholas was still feeling the effects of whatever “it” was that happened to him...yes it sounded like he had a stroke, but how could that be? He didn’t have heart problems. It didn’t make sense at all. Jay and I thought that by going to the hospital they would get to the bottom of whatever it was and make it better.
During the ride, I’m continuously on the phone texting my friends to try and help me with Michayla. I was very worried about Michayla, whom I left in tears. I had to take care of Nicky and as a result our plans together were just canceled. I was trying to find some sort of consolation for breaking her heart. She just wanted her mom to stay with her as promised so it was difficult to mollify. All of this when suddenly Nicholas sat up in the backseat and announced, “I’m better now!” The numbness on his left side had subsided. Relief flooded both Jay and I. Now Nicholas wanted us to turn around and go home immediately, but we wanted to continue on and let the doctors check him out anyway.
The remainder of the ride was a battle. Nicholas complaining about how it was “stupid” to go there when he felt okay now. He wanted to go to his friend’s house. The hospital takes so long to do anything. He felt fine. Couldn’t we take him tomorrow instead. He felt better now. He didn’t want to go. He just wanted to go home. It was heartbreaking for us too, but whatever happened scared us. We had to know for sure he was okay so despite his very strong protests we continued to the hospital.
Our grace upon arrival came when Nurse Stephanie (Nicholas’s only favorite ER nurse) was on duty and made sure he was her patient. We had a couple hours until the game started so she was trying her best to get him home before that. Nicholas had a CT, fluids and the usual slew of doctors in and out of his ER bay. And yet it appeared nothing was wrong now, he no longer had symptoms so he was allowed to go home. Symptom free so the doctors weren’t going to keep him. We were going back home until Nicholas reached up for my hand and said, “Mom is happening again…” And everything went numb again. His entire left side was limp and his face was drooping. Instead of going home we went upstairs to ICU. The Super Bowl came and went without any fanfare. The TV was on in his room when it started, but Nicholas couldn’t even look up at it to watch.
With results of a telling CT- Nicholas had a stroke. A STROKE. How could this even happen? Yes Nicholas had leukemia, but he was healthy otherwise, so what was wrong now? The strokes continued through the night. It was discovered the next day that a stroke was an extremely rare side-effect of the methotrexate Nicholas was taking. The resolution was cough syrup. Dextromethorphan was able to undo the effects in Nicholas’s brain causing him to stroke. We were in the hospital a full week before he was stroke free and back to normal functioning, but not before PT and OT, and swallowing therapy. Nicholas fought his way back and we thought we had won him his life back.
Less than 5 months later, Nicholas died. The recording of that WHAM radio show is one of the only audio recordings of Nicholas’s voice that I have. Incredulously Ben is now in heaven too, with Nicholas. I hope they are playing pool and watching football today. All of this, these thoughts and memories are the ones that flood my head and my heart every Super Bowl. The weight of my memories are heavy today. I love you, Nicholas and my whole heart misses you every day.
Hello, I’m so sorry you’re here.
There’s only one place you hear that greeting- at the beginning of every meeting of The Compassionate Friends.
This past weekend we had the privilege of attending the annual national conference. This year it was held in St. Louis, Missouri.
The conference is a place for healing. Gathering with our fellow bereaved parents, siblings and grandparents without judgement. Trying to fit in the usual norms of daily life where no matter how long ago our loved one died we still at times feel like we don’t belong; here on this weekend I am Nicholas’s Mom once again and it feels good.
This is the place where I'm not the square peg trying to fit into the round hole.
The conferences we attended in the past were such cathartic experiences that we were anxious to be able to go again. In the early throes of grief a griever has a need to suspend life for awhile to create a space that allows them to cope and internalize their loss, but you know what? No matter how long you’ve been on this journey, the desire for the opportunity to have these times again are a precious blessing.
Over 1000 people had preregistered for the conference and and though I don’t know how many more registered between Thursday and Friday there were many, and we were blessed to be among them.
An added benefit for us this year was the opportunity we were given to give back or pay it forward like those that helped us in previous conferences because we too were presenting a workshop.
This year Jay and I had the honor of presenting our Navigating Life workshop. There were about a dozen or so offer d simultaneously with ours and being new we just hoped not to be sitting in a room by ourselves! We knew of at least 2 people attending- 2 friends we made back in 2012 when we had first begun our grief journey and we were invited to a regional conference in Overland Park, Kansas. So thankful for Collene and Damon. We had Matthew and Michayla with us too, so we knew that there would be at least 6 of us.
Our room was rather large, set up with 90 chairs in 9 straight rows with 10 chairs in each row. Not the workshop set up we had planned on, because we didn’t have tables and being that participants build a compass throughout we were going to need to improvise. We rearranged the chairs to try to create a warmer space, set up our materials and began to wait. We had enough materials for 50 participants. We thought that was going to be more than enough. But it wasn’t. Folks started to wander in 30 minutes prior to the workshop and just kept coming. We had more than 50, more 75, 100, or even 125. Our total count was approximately 150 participants!
In a world where everything good is a double-edged sword due to our loss, we were beyond excited to think people wanted to hear what we had to offer. The session was extremely well received, participants interjected and shared throughout the workshop. We felt absolutely blessed for the opportunity to try to offer hope to so many at one time. Jay and I have come so far in this wilderness. The lessons we have learned are revered by us and sharing some of that is a humble experiences. Helping others helps us too.
If you ever went to summer camp or a religious retreat for example you can understand the bonds created and the ties that forever bind you to those with which you’ve shared an experience as special as this. The TCF conference coordinators manage to create a safe space for the bereaved on a grand scale that involves tremendous preparation. The hotel staff is even given sensitivity training in order to help extend the safety zone for conference goers. Their work is so appreciated.
At the Compassionate Friends we build bonds with one another over the course of the weekend. We are connected by the similarities of the tragedies in which we became bereaved parents, grandparents and siblings. Like in the story “The Invisible String” by Patrice Karst we have an invisible string that ties us to our beloved children in heaven we are also tied with invisible string to those we meet with at our TCF conferences.
I am so thankful for Collene and Damon from Topeka. They are Brittany’s Mom and Dad. When we were just beginning to scratch and scrape at the surface of this wilderness, they were parents already on the other side of the grief mountain. Just like David’s parents George and Joan, Kelly’s mom Bonnie and Karen’s mom Barbara from our Rochester TCF chapter, each of whom helped us find our own trail.
It remains tragic that the need for the Compassionate Friends exists and that new members join us every day from all over the world. No matter how far we come in our grief journey the loss is ever present. I thank God that The Compassionate Friends is there to walk with me. I truly am not alone.
I will hope to see you in Philadelphia my TCF family.
Age is just a number.
Whenever summer rolls around it's time for another birthday. This year is "big" one, but I'm okay with that. Here's why:
When you’re a child you eagerly await the next birthday. You want to get older. Some of those early milestones include turning 5- one whole hand and time for kindergarten. Double-digits, and then becoming 13, an official teenager. Of course you can’t wait to be 16 years old (in NYS) and get your driver’s permit and get a part-time job. Eighteen and you are now an official adult, you can drive past 9:00 PM, you can join the armed forces and you can vote in local, state and national elections. Then the big “21” and even 25. All such substantial milestones and reasons to celebrate!
Unfortunately not every child reaches those milestones. Whether they were an infant, child, teenager, or adult; when you have experienced the death of a child it leaves you feeling justifiably robbed. Not only robbed of the life of your child but robbed of the life you imagined you’d live with your child present. You lose your child's future and the trajectory of yours is altered greatly. Besides losing the milestones of the child who died, any living children's milestones are also robbed because they will forevermore be missing their deceased brother or sister in everything they do from that moment on. Both the big things and the small will be affected to some degree.
It is hard to reconcile yourself to the idea that you no longer get to celebrate the milestones of that life. In turn it may become more than difficult to celebrate your own birthdays. My husband and I struggle to celebrate our birthdays now. Are we glad we’re alive? We are. Life is sacred. We are glad to be alive because we have each other, our living children, the family and friends that make our lives so rich and so valuable; however, counting every additional year that we are blessed to be alive is just another way it hurts to face the fact that our son is not.
Abraham Lincoln is quoted as having said something like “It’s not the number of years in your life that matter but the life in your years,” and that’s very true. So how do you put life in your years?
I think it starts with kindness. Show kindness in all you do, first because it’s right and second because you never know what someone else is carrying around in their backpack or maybe in their arms. We are not God. It is not okay for us to pass judgement. It is not okay for us to be indifferent. Our world will not become a better place to live in without actively putting more love and kindness into it.
Be sure to become engaged in life instead of passively watching life happen.
So what are some goals we have to look forward to as we get even older?
There are some great things- graduating high school and moving onto college, a college graduation and then hopefully you get the opportunity to fulfill the personal goals and dreams you’ve set for yourself and the life you want to live. Marriage and having children are great life events, if that is your vocation.
...Question for you- you’re already an adult. Can you get more adult as you age? Do we become adult “er” or adult “est”??? Not really. Wisdom sometimes comes with age, and the possibility of contentment too. If you realize you haven’t found happiness in your personal life or your career, it may be difficult but not impossible to stimulate change. We are always growing and evolving. Stretching ourselves to become the person we were created to be. Becoming the best possible version of myself that I can is what I strive for every day.
Now being an adult means you have other things to look forward to besides just a bigger number. No, we get to put so many things on our list of accomplishments - like mammograms, hot flashes, menopause, colonoscopies, wrinkles, gray hair and gravity (pulls EVERYTHING down). These are things only slated for those of us who are blessed to live long lives...just kidding, but not really...
In all seriousness, age is just a number. The bigger the number, the more life you have lived. The more chances you have had to love and be loved; that is a blessing.
Seven is the world's favorite number. 7 days of the week, 7 colors in the rainbow, 7 continents, 7 seas and even 7 notes on a music scale. The world loves 7. I do not.
“Fearless” Nicholas ended his battle with leukemia and all of its complications today, unfortunately for us, it is not the ending we had all prayed and hoped for. Nicholas was able to remain comfortable throughout this last fight. His lung disease, however, progressed at a very rapid pace. He was not able to overcome his Graft vs Host disease. Finally, finally he will not suffer anymore. We that loved him and knew him so well understand his abundant love for life and for living. He taught us so much. We are such better people for having his bright light in our lives! We pray that God’s peace and love is with all of you. We are truly blessed for every day we had Nicholas with us. Nicholas now walks a path beside Jesus- He is victorious after all.
I wrote this 7 years ago...in some ways I feel as if I was more positive and accepting at that point in time than I am today. It's difficult to show positivity and cheer today. Today, on this day now for 6 years I have allowed myself to do nothing more than just be. I don't make big plans, I did for a few years, but it was difficult and it filled us with trepidation. I don't engage in a lot of activity, I don't place myself in any type of social situation, I don't allow myself to feel obligated to anyone or anything and I do so guilt-free. June 29 belongs to Nicholas.
Every day of the year I remember my Nicholas, but on the 29th of June I pause from existing in a parallel universe where I walk in the past with Nick and the present/future with the rest of my family and I allow myself the freedom to put him first above all other responsibilities. Although those who haven't walked in my shoes may be quick to question my choices, rather than feel the need to explain, I simply hold them away at a safe distance. No one will have the power to deny me this time to be Nicholas' mom.
The past 7 years have brought some tremendous changes our way. The oldest of our clan finished high school, went to college, technical school and entered the working world. Feeling unfulfilled he joined the armed forces. He also married the love of his life. Child #3 finished middle school, ventured to a brand new high school to search for peace of mind and solace of the heart, graduated and moved through a successful first year of college. Child #4 closed out the Kovaleski years in elementary school, middle school and is now eagerly embracing his senior year. The younger two have surpassed the age Nicholas lived to be. All 3 have turned 16, learned to drive and gotten their driver's licenses. We've had proms, graduations, recitals, religious sacraments, school musicals, band and chorus concerts, holidays and birthday parties and of course a marriage all without their brother beside them.
That doesn't even take into account the day-to-day interactions we've missed, the bickering we didn't miss, but wish we had had, the being here and being with us that we took for granted and assumed we'd have. The loss is too big. Not only was Nicholas' life taken from us, but the present and future for each of us was stolen to some degree. We are getting used to the day to day missing Nick, but those special moments are still difficult to handle. We still look at 3 children where 4 used to be.
Thank God for child #1, #3 and #4. Every moment of every day that they depended on us to continue to be their parent and BE present. THAT was our saving GRACE. THEY gave us purpose. “The most precious gift we can offer (our children) is our attention. When mindfulness embraces those we love, they will bloom like flowers.” ― Thich Nhat Hanh
Lucky number 7 is not so lucky in this case. It's just 7. 7 too many. We are thankful for the grace and blessings God has given us during these 7 years, however; if we could have our Nicky with us, we'd much prefer that instead.
I hope you're keeping an eye on us, Nicholas and that we are making you proud...