By Sarah Kariniemi,
Our Journey with Brecken
Becoming a mom has been one of my favorite milestones. As a little girl I would always tell people that I was going to have a HUGE family. I often dreamt of having 10 children! So when my husband Daryl and I were able to easily get pregnant not only the first time but the second time we were elated! We did not find out the sex of our babies until they were born. I was convinced after we had our first boy that our second was for sure a girl! But on March 4, 2017 they laid a whopping 9lb 7oz baby boy on my chest. And I was in love, and shock, all over again.
Brecken Duane was a mover and a shaker from the start. He met most of his milestones early and we thought for sure by Christmas or the New Year (at 9 months) he would be toddling after his big brother Easton. After a busy holiday weekend, I had given the boys a bath and was settling down to go to bed. On the night of December 28, 2017 as I was nursing Brecken to sleep, I noticed his arm twitching. A twitch I will never forget.
Within just a couple hours, and one long ambulance ride, Brecken was in the Pediatric Intensive Care Unit (PICU) on a breathing tube and what seemed like another gazillion tubes, cords, and medications attempting to keep his body as stable as possible. He was having uncontrollable seizures that were not responding to anything. Our world as we knew it was flipped upside down and we had so many questions.
After a few weeks of trying different medications, the doctors were able to stabilize him enough that we were able to take his breathing tube out and he would be able to breath on his own. Ironically though, the same day that they placed my baby boy in my arms, after over three weeks of not holding him, was the same day they told us that Brecken was diagnosed with a rare genetic disorder called Alpers Syndrome. And there was no cure.
Although unable to predict the future and quality of life Brecken would have, after 40 days in the hospital we were able to take him home. He continued to have around the clock medical care, in home nurse visits, and medical appointments 1-6 days a week. I quit my job as a registered nurse to take care of my little boy.
For the next five or so months I rarely left Brecken’s side, all while still raising an active 3 year old. I was hoping through the healing power of my own time and energy, he would get better. I took him to appointments, fed him around the clock through a feeding tube. I monitored his oxygen and gave him up to 12 medications at one time. I worked with physical and occupational therapy trying to help him get stronger. I did and tried just about everything. We were in and out of the hospital numerous times a month for numerous different symptoms or problems. And through this all, Brecken had a smile that lit up the room. It was contagious.
The last month of June was the hardest. Brecken was hospitalized for breathing difficulty. He was also so very lethargic; he was not responding to much. It was during this hospitalization that Daryl and I had to make the gut wrenching decision that we would put Brecken on hospice and focus the rest of his days on pain management and comfort. That was devastating.
On July 18, 2018, after a long fight with liver failure and other symptoms of Alpers, Brecken, at 16 months old, passed away peacefully at home in the loving arms of his daddy, with his big brother and mommy at his side. He had gained his wings. We laid him to rest in his own hand crafted “special box” (as his big brother called it) and buried him in the cemetery a couple blocks from our house – walking distance so we could visit whenever we wanted.
Through all this, Brecken was so strong. He fought through any obstacle with a chubby cheeked smile on his face. We say BreckenStrong. And he taught me how to be strong – MommingStrong. Through my journey with Brecken, the joy and the grief, I have found my love of writing and started my own blog (www.mommingstrong.com) to share his story.
The days, weeks, months, and years without our baby boy have been hard. I miss holding him and kissing his cute little toes. I am constantly thinking about what Brecken would be like now and what he could have been. I continue to grieve the loss of a little brother for Easton. We continue to see Brecken shine through in ways unexpected. Every time we see a giraffe we think of our sweet boy. He may not be with us, but his memory and smile will live on in all of us.
To Infinity and BeBob Baby Boy. Love Mommy.