I’ve seen a lot of posts recently that people would like to stay up until midnight to “watch 2016 die”. While I respect that it wasn’t the best year, for myself and family included, I am glad it happened. I want to fondly say goodbye to the memories we have made and the experiences that have built us and keep them tucked away in my heart and mind.
2016 was a rough one, it started out with trips to the walk in clinic and the ER, and by mid January ended us in our first ambulance ride on our way back to Children’s, where Charlie would undergo his 3rd Open Heart Surgery in under 4 months. However, in that same stay, I was able to find some acceptance in the life we were now living. That third hospitalization opened me up to the heart world and allowed me to become an advocate instead of someone wallowing in loss, grief, and self pity. I found a new light and I found peace with God that I very much needed.
It was around this time that we were strongly supported by friends, family, and those we never met through a gofundme account our friend Lotty set up for us. The help from friends and strangers gave us a reassurance of the good in the world. We thank you all.
I was also introduced to a Mom’s group at Children’s where I was able to share my experience without feeling judged or like I was bothering someone. Through that same group I was able to meet my best heart mom friend, Courtney. And without her I don’t think I would have made it through some of the many struggles of this year. She and her sweet family have become dear friends to us, and without 2016 we wouldn’t have gotten them.
Charlie’s surgery in January was the first of it’s kind performed by his surgeon, and as far as anyone remembers, the first at Children’s. A rare parivalvular leak challenged his surgeon and sent him on a mission to do something marvelous. He succeeded and that success grew our relationship with him even closer. It also challenged Charlie to prove he could succeed yet again, and well, you know the rest. I don’t regret or want to change that.
In the month of January, post surgery, Charlie was featured on the Prairie du Chien, Wisconsin, Eagles Heart and Cancer Telethon, thanks to Uncle Tom and Aunt Cath. His story was shared in an effort to help raise funds for research. They raised $43,723. We were a part of something amazing!
February brought along Congenital Heart Defect Awareness week. We were lovingly supported by so many people as they posted their photos to Facebook with #iwearredforcharlie. In an effort to raise awareness, I connected with New Ulm Mayor, Robert Beussman, who graciously signed the proclamation to recognize CHD week in New Ulm. I was also given the original copy that I have saved in my hutch, that success for me, be it small, was the stepping stone I needed to search for bigger ways to raise awareness.
In March, Charlie was a recipient of the Tim Orth Memorial Foundation Basketball Game (thank you Mr. Morgan for connecting me to it) and was honored at the basketball game. He also received photos with several mascots and money towards his health expenses, as well as being featured in the Bird Island news paper. This was a huge honor and an amazing event to be a part of!
The months ahead brought several respiratory illnesses, specialists, follow ups, medications, hospitalizations, and so on and so forth. They were long, and tiring. However, through those illnesses we were able find a weak point of Charlie’s, in swallowing. He began Speech Therapy to correct it. Through this we met Liza. She was a wonderful blessing to us as she was the first to successfully get Charlie using any form of drinking device other then me! This was huge progress for him and we needed it.
We were also blessed during that period with Callie, Charlie’s Physical Therapist. Without his constant issues with breathing, we wouldn’t have been led to Callie. We began seeing her to help Charlie breathe with his chest, not his belly. He quickly succeeded in this area, thanks to some stretches. And proceeded on to roll, crawl, stand, and walk within a few short months of her services. He went from delayed to excelling, and at a time when we struggled to find hope he would ever breathe normal, we needed that success, we needed Callie.
Moving forward the Spring and Summer brought us wonderful chances to advocate as a family. We entered 5, 5k races: Citizens Bank, Heartbeat 5000, Bavarian Blast, Lasting Imprint, and Super Hero Heart Run-Omaha. We wore our #iwearredforcharlie shirts and were often joined by friends or family in the races as well, showing their support. Charlie was also largely supported outside of the races by everyone who bought a shirt, and we are so thankful to Lindsay for designing them for us!
August brought along a humdinger of a curve ball as Charlie developed a blood infection. This caused two separate ambulance trips- one for the initial infection and one when the home antibiotics tried to explode him (literally). As well as an ER trip in the middle of it for an allergic reaction. During this stay we were introduced to Pastor Kom (Thank you Pastor Sutton) who was a great support for us in the hospital.
In the middle of the two stays we suffered the loss of my Papa. This was a detrimental loss to me and my children and one that I have not come to terms with yet. However, it was said to me that Papa went to Heaven so that Charlie could get better, and I believe that to be true. Papa was always deeply concerned about Charlie and what better way to make sure he’s okay then to go straight to Jesus.
In September, Joe and I celebrated 5 years of marriage on our Omaha trip. What a roller coaster of 5 years it has been, but what a success to make it 5 years and know that we have defied the odds of the world. We have successfully made it through the worst year of our lives together, and stronger together because of it. This is a success we take great pride in.
October would bring another surgery for Charlie as we upgraded him to a port. This has proven to be a wise choice and one I would not take back. It also allowed us to keep our friends in Oncology for quite some time, we have grown quite fond of them, and they seem to like him.
Thanksgiving, as it turns out, is not Charlie’s favorite Holiday, or maybe it is? He has decided to make it a tradition to spend it with his Nurses at Children’s. While this visit was none to exciting and we don’t have any idea why he had a fever. We did find out his blood pressure medication was no longer keeping him down enough and he was in need of an increase. Without that impromptu stay we wouldn’t have discovered this. What I personally gained from that trip up was a profound thankfulness for the ambulance driver (Josh), that we did not end up in a ditch in that horrible snow storm. As well as the reminder that I can’t control everything, despite my greatest efforts, and letting go and letting God is always the best choice.
And lastly, the month of December. It brought us the worst case of croup I’ve ever seen. Which came with Adenovirus, which in turn gave me pink eye too! (Thanks for sharing Charlie.) This became one of his worst rounds of illness, which despite great efforts, ended in more steroids and an increased asthma plan. Which also left me high and dry on personal leave and vacation days from work, as I stayed home to care for him. In this, I was reminded how wonderful and gracious people can be, as my coworkers generously donated their own personal leave to help me.
Because of his early in December illness, we were also fortunate to get his generally two week long, “healthy” gap over Christmas and New Years. We were able to enjoy time at family get togethers that we had to miss last year.
This year we have been tested beyond measure. We started off the year hitting about as low as we had ever been. We seemed to hit speed bump after speed bump, rolled (more like fell) down a few cliffs, and climbed mountains that seemed like Everest. But with every single trial we faced, we found success. We found the highs to go with every low. We traveled the road together, we picked up friends along the way, we said goodbye to loved ones, we learned about ourselves and what we are capable of, and we rejoiced in our accomplishments.
My dear work Mom (before I ever had Charlie, maybe even before Mya) made me a picture once. It was a storm and rainbow. You can’t have a rainbow without a storm. We had a lot of storms, but we had some awfully beautiful rainbows.
Earlier this year I began reading in the book of Psalm. I must confess that I did not make it as far in as I would have liked (this is something I continue to work on). But when I open my Bible I find several passages that I made note of.
Psalm 2:12 Blessed are all who take refuge in him.
3:3-6 But you, Lord, are a shield around me, my glory, the One who lifts my head high. I call out to the Lord and he answers me from his holy mountain. I lie down and sleep; I wake again, because the Lord sustains me. I will not fear though tens of thousands assail me on every side.
9:18 But God will never forget the needy; the hope of the afflicted will never perish.
10:17 You, Lord, hear the desire of the afflicted; you encourage them, and you listen to their cry,
16:1 Keep me safe, my God, for in you I take refuge.
17:6 I call on you, my God, for you will answer me; turn your ear to me and hear my prayer.
18:1 I love you, Lord, my strength.
And my last and favorite: 18:16 He reached down from on high and took hold of me; he drew me out of deep waters.
I will stay up tonight (Lord willing) to wish 2016 goodbye, to celebrate it, and thank it for all that it gave to me. I will welcome 2017 with open arms, ready to learn new things and celebrate all that it has to offer. I will embrace new goals, new trials, and praise Jesus for the time he has given me, whatever it may hold.
My personal goals for 2017 (I feel that if I share I’m held accountable):
- Jesus, without Jesus I would be no where.
- Soak up that family (this is always on my list)
- Learn more- there’s always something you don’t know
- Blog more- its therapeutic for me and your feedback has been so wonderful to hear
- Focus on making myself better, I can’t be the best for my family without being the best for me (so cliche, but true)
- Advocate-for my son, my family, myself, CHD, and anything else I’m passionate about (I had to make a 6 because I always do things in threes, fun quirk you didn’t know about me.)
May you have a Blessed New Year and thank you for sharing on this journey with me. Please share my blog to get it out there. If I have touched one life with my writing then I consider this a success.