Nicholas Updates 2020
December 30, 2020:
December 24, 2020:
December 23, 2020:
Find your happy place!
December 22. 2020:
December 19, 2020:
December 19, 2020:
December 14, 2020:
December 1, 2020:
November 26, 2020:
November 21, 2020:
November 20, 2020:
November 20, 2020:
November 19, 2020:
November 18, 2020:
November 11, 2020:
November 11, 2020:
Happy Veterans Day to all of our soldiers, both past and present. Thank you for your courage and sacrifice in defense of our freedom.
November 8, 2020:
November 5, 2020:
November 4, 2020:
October 31, 2020:
October 27, 2020:
October 26, 2020:
October 24, 2020:
"Live a life you don't need a vacation from"
October 17, 2020:
October 10, 2020:
October 9, 2020:
October 2, 2020:
September 29, 2020:
September 26, 2020 posted:
"Life isn't about waiting for the storm to pass. It's about learning to dance in the rain"
September 10, 2020 posted 8:17pm:
"We cannot change the cards we are dealt, just how we play the game"
September 9, 2020 posted 2:05pm:
September 1, 2020 posted 9:27pm:
August 22, 2020 posted 8:15pm:
August 20, 2020 posted 1:19pm:
August 17, 2020 posted 4:39pm:
August 15, 2020 posted 10:20am:
August 13, 2020 posted 4:49pm:
August 11, 2020 posted 7:14am:
August 10, 2020 posted 8:50pm:
August 10, 2020 posted 5:20pm:
August 9, 2020 posted 5:04pm:
August 5, 2020 posted 5:01pm:
August 2, 2020 posted 2:50pm:
July 23, 2020 posted 5:01pm:
July 23, 2020 posted 11:33am:
July 21, 2020 posted 10:03am:
Nick has been fighting since the day he was born. He’s not a survivor, he’s a warrior
July 20, 2020 posted 10:43am:
July 19, 2020 posted 8:01am:
“Happiness is a warm puppy”
July 18, 2020 posted 3:01pm:
July 17, 2020 posted 5:54pm:
July 17, 2020 11:27am:
July 14, 2020 posted 10:16pm:
July 14, 2020 posted 9:44am:
July 13, 2020 posted 2:31pm:
July 13, 2020 posted 7:35am:
July 12, 2020 posted 10:39am:
July 11, 2020 posted 9:04am:
July 10, 2020 posted 7:32am:
July 9, 2020 posted 8:41am:
July 8, 2020 posted 9:39am:
July 7, 2020 posted 9:09am:
July 6, 2020 posted 8:08pm:
July 6, 2020 posted 5:43am:
July 5, 2020 posted 8:23am:
July 5, 2020 posted 5:08am:
July 4, 2020 posted 4:53am:
July 3, 2020 posted 9:46am:
July 1, 2020 posted 11:48am:
July 1, 2020 posted 6:19am:
June 30, 2020 posted 11:05am:
June 29, 2020 posted 10:00am:
Almost as fast as it was said, Nick fully coded. They did chest compressions and he needed to have his heart shocked to get him to come back. That is something we will never be able to unsee.
There’s nothing like living on the literal line between life vs death that brings upon a deeper understanding of how beautifully delicate it is. I’m profoundly heartbroken and yet cautiously optimistic.
We can find comfort in knowing that God is love and Nicholas is a direct reflection of that.
We ask that you please continue to send Nick your thoughts and prayers. Thank you for loving our little guy right along with us.
The coronavirus test is much harder the second time because Nick knew what was coming. Yikes! Then of course the IV took 2 tries but that seems to be par for course with him. I get Nick to focus on breathing slowly to get him to calm down and now he’s just chilling out listening to his iPad. We will tackle finishing his LEGO dinosaur in a little while and maybe pick out a movie to finish the night.
Nick is the first case in the morning and we will probably start to head downstairs to the surgical level at about 6:30am. Then it’s buckle in time to a excruciating long day of waiting.
It’s been so hard to control the sheer emotion of everything. It’s just too easy to let the thoughts of doubt and darkness to creep in. Every moment with him today, I silently keep thinking to myself, please God don’t let this be the last time.
Please say an extra prayer for Nick and for his surgical team.
“You never know how strong you are until being strong is the only choice you have”
“If you want to change the world, go home and love your family”
June 12. 2020 posted 7:08pm:
June 11, 2020 posted 7:34pm:
What we know is that Nick’s heart is dilated which means that his heart muscle is weakened and cannot pump effectively.
“The quieter you become, the more you can hear”
Like most of you, we have a touch of the quarantine blues so having an adventure and change of scenery is much needed. We will only be gone for about a week and look forward to seeing our old neighborhood while we are there.
The benefit of us being able to travel in an RV is that we are self contained. We don’t have to risk exposure to germs from a plane or staying in hotels. We don’t have to worry about refrigeration for Nick’s food and the kids are comfortable and know it to be their home away from home. And seriously the bathroom situation is amazing. I can help them go when they need to without having to stop our trip a zillion times. Think of when you have to use the bathroom on a plane, but with a touch more turbulence.
After our doctor appointments and visit to Michigan, we have a planned stop in Iowa on our way back home. More to come on that next week...
“We travel not to escape life, but for life not to escape us”
Have a great week, wishing you all peace
May 12, 2020 posted 10:28pm:
Nick says “Dilly Dilly!”
Social distancing prevented the Easter Bunny from stopping at our house. Even he didn’t get a pass.
Hoping you had a great Easter
It might be annoying or distressing, but it is okay to be “bored”. It’s an important lesson for our kids to not always be fulfilled with being entertained every minute of their lives. We do plenty of fun things together as a family but we also have times when the kids say they are bored. What they don’t realize is that we are teaching them a skill set in that too. Being bored can teach you patience, it can teach you to adapt, it can teach you to be still and expand your mind, it can teach you to be creative, it can teach you to sense clarity, and it can teach you to appreciate and enjoy peace.
Thank you for being uncomfortably bored. When you are bored and staying home, you are helping to protect the vulnerable portions of the population like Nick. Also a giant Thank You to all those that are still working!
Be bored. Be well. Be grateful.
So as an example, something as simple as going out to the grocery store with the whole family is complicated. We have to worry about sick people who are there. We have to worry about what things the kids will touch that will get past our ritualistic sanitizing checkpoints. We weigh factors like: Is it cold and flu season? How long are we planning on being in the store (longer than an hour and we have to bring Nick’s tube feedings)? Do we use a cart and our own strollers? How busy is the store going to be? How do we best avoid coming into contact with people? How should we discourage our kids from trying to help us by touching everything and putting items on the dirty conveyer belt? How do we prep and deal with the normal pre schooler aged behavioral drama if it comes up? If after those considerations we do in fact let everyone go, we still question our decision at every turn. Did they touch something that will result in someone getting sick? Was the risk of someone getting sick worth it when we weigh it against allowing the kids to experience normal outings?
Honestly, most trips to the store are done by Jimmy. He braves the elements for us because it’s so much easier to manage one vigilant germ avoiding adult versus dealing with all the added variables associated with bringing everyone. Sometimes we all go for a car ride to the store and just wait for him so as to feel like a proper outing. It may not be the best alternative to balance normalcy and be like all the other kids and families, but we do the best we can and make decisions that we think are best for our family. As a byproduct, that also means we miss a lot of people’s life events like birthdays, weddings, showers, family gatherings, holidays, and graduations.
There is a constant need to plan and think ahead while also being able to be purely reactive and flexible. The decision making process for a parent to a special medical needs child is exhausting. This type of tired is from the constant stress of not ever allowing ourselves to make mistakes and if we do, being able to somehow live with them. We can’t rely on anyone to care for Nick with confidence so we really can’t take a day off. We know that if we are “off” or make a wrong judgement call, that it can come with dire consequences which flirts with death. Literal Death.
We have to feed Nick the correct calories and correct volumes, administer the correct doses of medicines, advocate correctly for the best care, make critical medical choices, eliminate exposure to the many daily dangers, and navigate the sea of choices to find a balance that somehow reassembles healthy and normal.
Trying to put all of these feelings of isolation, exhaustion, anxiety, and stress into tangible concepts to process can be quite heavy. But all of that is undeniably our reality as much as the smiling faces during beach days, Disney days, movie nights, and family time. It’s imperative to acknowledge all aspects of this life and not just the highlight reel of snap shots of half truths and masked grief.
We get so good at this self preservation mode of keeping it all together that it denies us the ability to admit that we aren’t superhuman, not all the time anyway. You have to give yourself permission to feel a certain way, and to also know that it is okay to feel that way. It’s okay to confront the uncomfortable feelings of being a failure, anger, depression, stress, and anxiety. It’s okay to feel those things sometimes. And if you feel those things more than sometimes, it’s okay and important to ask for help. But those conversations won’t happen if we don’t bring to light the places that continually get brushed aside as too difficultly dark to navigate.
This journey has been fraught with darkness and uncertainly but it has revealed to us a beautifully less traveled path to which we can be our most authentic and best versions of ourselves.
Take time to appreciate the rain and you will better appreciate the rainbow. “Everyone wants to be happy, nobody wants to be in pain. But you can’t have a rainbow without the rain”
Sometimes when we try to look ahead, the distance becomes too overwhelming. In those times, all we can muster is the tiniest tip toe in the direction we are headed. But that is progress too. We have learned to find and celebrate all of life’s smallest victories.
“Sometimes you face difficulties not because you’re doing something wrong but because you’re doing something right”
We started our epic journey in October of 2018. The plan was to enjoy every moment of our lives by exploring new places and experiencing new adventures. Our goal was to spend as much quality time together as a family as we could. We knew Nick had an impending heart surgery ahead and it was exceedingly important for us to make lasting memories. We wanted to live purposefully so we didn’t have to look back with any regrets. Knowing that if the unimaginable happened with Nick’s surgery, we wouldn’t be left with the wish for time back to do it differently.
We did that, we were living our best lives. We started in Minnesota and trekked across country to California. After spending over a month away from home, we then set off to the opposite coast and made our way to Florida. It was such an amazing trip with many cherished stops along the way with visits with friends and family.
Arriving in Florida felt like a major accomplishment. We had traveled from coast to coast. We had already planned on hunkering down in Florida for the winter and made our first attempt at being snow birds. It didn’t take long to realize that the sunshine and 80 degree weather in Florida was preferable to the Arctic freezer which was Minnesota. It also didn’t take long to realize that traveling cross country for a family of 6 who liked to make frequent visits to Mickey Mouse’s house was becoming very costly.
So I had taken on a part time bartending job. It was something that I could easily just jump into and it wasn’t serious or permanent. It was the means to our continued fun. But as time went on, my job not only allowed us more financial freedom, it also was feeding a part of my ego. My attentions were slowly turning more to work and I had even changed my status to full time. I got to a point where when I wasn’t working, I was exhausted tired and my family only got what I would equate to as leftovers of myself.
I was lost. For many of us, we work hard so we can get to a place of security and a level of comfort, the retirement endgame. The place where we don’t have to work and we can just enjoy our time with family and friends. So we focus on working to achieve those goals by putting ourselves through school and accumulating student debts. We work ridiculous jobs with long hours. We excuse missing family functions because our goal is somehow a noble mission and the end always justifies the means. Except, what if we got it wrong? What if we didn’t have to work so damn hard to get to the “some day” and we focused more on the “today”?
On Thursday, we had a feeding therapy appointment at the children’s hospital for Nick along with some routine labs. Just the thought of stepping foot in the hospital gives me anxiety. The rogue germs wandering about and praying to God that as we navigate through the sea of sick people, we can avoid picking up anything that will compromise Nick’s health. Added to that worry, is the panic of trying to keep an inquisitive four year old distracted for hours on end to keep him from touching anything that might be infected.
Being in the hospital brought it all back. It brought back all the memories of past hospital stays. All the struggles and long days and nights of just watching Nick’s little body fight to live. It brought back all the anxieties and fears. It also brought back all the triumphs, the appreciation, the gratitude, and the love. It brought me back to the place where I could remind myself why we were here to begin with.
Nick’s appointment at the hospital grounded me and my focus came back. So as I was forced to hold Nick down to fill 5 tubes worth of blood, I instantly felt guilty for how selfish I’ve been. Months of my incessant bitching about work things became so stupid as my brave little boy is screaming at the top of his lungs for the poking and pain to stop. What in the world do I have to complain about. This sweet child of ours has endured more in his short four years than most do their entire life. We have real stress to deal with. We shouldn’t be consumed with the superficially created, self imposed stresses from work. So, I quit my job.
Needless to say, Friday was an all around great day. We spent time together which wasn’t rushed or met with half energies. We are planning to spend the rest of the winter months in Florida before heading back up north. From here, we will stop home in Minnesota then go to Michigan for Nick’s doctor appointments or we may decide to do the reverse.
We also have some big family news, James has enlisted in the military. We will have to say our goodbyes to him soon because he will be shipping off to basic training at the end of March. We are so incredibly proud of James for making this huge decision for himself and because he also got the highest possible score on the ASVAB test. That allowed him to choose any branch of service and any job. He chose Army and 17C (Cyber Operations Specialist).
It will be interesting to see where life takes us to a year from now and what that will look like. Until then, some food for thought: If tomorrow was the end, was today the way you would have wanted to spend it?