It All Began and Ended on August 16, 2011

Today I’m starting something new … blogging. I’ve tried running, kickboxing, reading faithfully, and even yoga in the past. I love yoga, I really don’t like running. Blogging is my next new thing. Blogging, that’s a word, right? I’ve had so much built up in me for so long that I really think being a blogger is going to be good therapy for me. It will also give all of you who followed Nicholas’s cancer journey through CaringBridge a chance to pick up where we left off. Here I go!

August 16, 2016 is just a few weeks away. To many people, this is just another summer day. I assume people will carry on with their day as they complete their school shopping, or perhaps some may complete their dreaded to-do list. To others, August 16th will be just another normal workday. For my very dear friend, he will celebrate his birthday with his wife and three beautiful daughters. Only will this friend of mine, family and a large group of friends will remember what this day is. August 16, 2016 is five years that we lost Nicholas to pediatric cancer. No doubt this group of amazing family and friends will all go to work with smiles on their faces. But underneath that smile will be a heavy heart. No one around them will know the pain they will carry on this day. Now, it’s our family and friends who will endure this day with these emotions. It’s quite unimaginable the pain Erik and I will have as we replay the day five years ago, just as we have done every year on August 16th.

Still, we will have that smile on our face and carry on with our day like any other normal day. It will be the emptiness of our vehicles on the way to and from work that will really get to see how we are doing. And that’s okay. My vehicle is used to it – it has heard a lot of what I have to say in the last few years. My vehicle has also seen a lot of pain and crying. I usually let it all out and then crank the music so loud that I almost can’t hear myself think anymore, and by the time I get home, I feel pretty okay. Loud music equals good therapy I think. I should really have a name for my Trail Blazer. We’ve become pretty good friends over the years.

Five years without Nicholas. How can that be? It feels like forever since I last held Nicholas. Forever is a long, long time… that is what we tell Maggie. I’m not exaggerating when I say it feels like forever. I have been apart from my baby for just about 1,825 days. Most parents can only be away from their children for a day or two before missing them like crazy. That’s a parent’s love. Unconditional. I have to be some sort of a superhero or something to be away from Nicholas for that long. I’m sure that is what Nicholas would call me if he could. Really though, Nicholas was the strong one. He taught me so much during his almost four-and-a-half years of life. First with his heart, and then with his cancer. The things he went through, well, most people don’t go through what he did in their entire lifetime. He will forever be the strongest person I will ever know. He is the superhero.

I know Erik and I kind of left a lot of people hanging after we stopped writing posts on CaringBridge. It was too difficult to continue CaringBridge without Nicholas. While he was going through his medical treatments for cancer, CaringBridge was our getaway – where we could write everything down during our day/week with Nicholas. After Nicholas passed away, well, CaringBridge wasn’t the same anymore.

As I continue with my blogging, I will talk more about Nicholas and all he endured in his short four-and-a-half years of life with us. For now, what has our family been up to? I’ll tell you!

Let’s start with Miss Maggie. As many of you may recall, Maggie was born two months after Nicholas came home six months after he was initially diagnosed. She was six months old when Nicholas relapsed the first time, about 15 months when he relapsed the second, and only 18 months old when she lost her big brother to cancer. Although she doesn’t have any memories of Nicholas, she talks about him every chance she can. The pictures she has of her and Nicholas are treasures that she keeps close to her. Maggie is six-and-a-half years old now and going into first grade this fall!

Saying she is full of life is an understatement. Rarely does anyone see Maggie without a smile and that constant glimmer in her eye. She loves school, Just For Kix, spending time with her friends, drawing (she wants to be an artist when she grows up!) reading, swimming, making people laugh, and eating orange floats at her favorite A&W restaurant. Maggie is an amazing big sister to her little brother, Andrew. As older siblings tend to do, she enjoys picking on Andrew any chance she can just to see if the “angry bear” (as she calls it) will come out. It usually does and ultimately attacks Maggie. She doesn’t mind most of the time, though.

Before starting our family, Erik and I agreed that our family would be complete with three children. A year and a half after Nicholas passed away, we were blessed with our third child. Andrew Nicholas … our caboose. Unlike Maggie, Andrew has no pictures with his big brother. That’s difficult as a mother. However, Andrew knows who Nicholas is and includes him in his stories. At the age of three, Andrew cannot quite comprehend what happened to Nicholas. He knows Nicholas had ickies in his body and that he is now with the angels in heaven. He knows too, that there is a beautiful stone in the cemetery not too far away from our home with a picture of Nicholas and all of Nicholas’s favorite things. He knows the toys he plays with and the clothes he wears once belonged to Nicholas. But at three, he doesn’t fully understand why his big brother is not coming back to us. At least a couple times a week, Andrew will ask me when the angels will make Nicholas better and send him back to us. He even asked if we could call the angels on the phone.

I decided last week to explain things at a higher level for Andrew; that the angels were not bringing Nicholas back because he died, and after you die you stay with the angels for always. I assured Andrew how wonderful it is that Nicholas is with us always. We don’t see him but he is always, always with us. Wow. That was difficult. It’s times like these that my already broken heart breaks again into a million pieces. Although there are no pictures of my boys together, I know there is still a brotherly connection between the two of them.

Andrew loves to play with cars, draw, color, read books, make people laugh, toots (he is three you know), and preschool. He has a smile that steals just about anyone’s heart. He is my little snuggler with such a kind heart, but don’t let his look of innocence fool you! This little one is the one who makes me work for my Mommy title. I need a new challenge in my life anyway.

And what about Erik and I? Well, we’ve been keeping ourselves quite busy. Between juggling our full time jobs and raising our small family, we also started a foundation in honor of Nicholas. So many people and foundations helped us financially while Nicholas was fighting his cancer, so after Nicholas passed away, Erik and I knew we wanted to give back to families affected by pediatric cancer. Not knowing how to go about starting a foundation, we started off rather slowly. We needed a foundation name, a logo, and a mission statement. Papers needed to be filed. Fundraisers needed to be scheduled. Talk about overwhelming! In the year after Nicholas passed away, we figured it all out with the amazing help from family, friends, and our community; before we knew it, everything was in place and we received paperwork from the state that the Nicholas P. Koenig H.E.R.O. Foundation was a legal organization. Coincidently, the paperwork was signed August 15, 2012; only one day shy of a year when cancer took our baby. Whoa! That was out of our control.

I could go into great detail about what our organization is all about and what we do and why we do it, but it’s all included in this website. Please take some time to read up about us. Our foundation is more than just helping families affected by pediatric cancer; it’s our way of honoring and remembering Nicholas as well. It’s our way to share his story. It’s my and Erik’s way of continuing to raise our son. There is a lot of time, thought, sweat, and tears with the foundation and our committee members, but it is all so worth it. Nicholas is with us every step of the way. As my brother-in-law says, we are helping put an end to pediatric cancer and having fun while we do it. If you knew Nicholas, you knew fun. Even through all the chemo, radiation, shots, the stem cell transplant, medicines, physical therapy, and occupational therapy, Nicholas had fun. Believe me, I’m not sugarcoating that statement.

In these last almost 1,825 days, I’ve learned a lot about life. I’ve learned there is so much in my life that is out of my control. How does that saying go? Pull up your big girl underwear and keep going. I’ve learned to put one foot in front of the other and do the best I can. I’ve also learned to live my life differently without my Nicholas … that’s the hardest one of them all. I’m often asked how I continue to put a smile on my face. How I am able to lose a child to cancer and still do the things that I do. The truth? It’s my husband, my kids, my family, my friends, and my community who have picked me up when I’ve fallen. I am one lucky lady. No, I am blessed, so very blessed with the most amazing people in my life. There isn’t a day where I just want to stay in my bed curled up in a ball and just cry. But life goes on after someone we love dies whether we like it or not. It’s hard and it sucks. We’ve all been there. Besides the bed sores that I would get, I would be missing out on so many other amazing things in life.

Especially in Maggie and Andrew’s life. So, I decide to get out of bed every day and put that smile on my face because, well, life is wonderful. I lost my Nicholas to cancer. That is a pain that will never, ever go away. No doubt I will let a million more tears run down my face in the next five years. But this life God has given me is beautiful. I’m a wife to an amazing man, a mom to three incredible kids, and a daughter, granddaughter, sister, niece, aunt, and friend to a large group of really awesome people. Not once have I ever second-guessed how blessed I am.

Nicholas would want to see the smile on my face and to see me live my life to the fullest … and that is what I plan to do.


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