There are no words and I don't think I will ever find the words to describe the moment I held my baby in my arms as he earned his wings to heaven. It should never be a thing. It should never exist. It's a horrible wicked nightmare that you just want to wake up from. I want someone to take a paddle and slap me across the face and tell me to wake the &#^% up. But no, I am awake, this is real life. And I am unimaginably heartbroken.
The morning of July 18th will be a day I never forget. It will be a painful remembrance of the day I had to say goodbye. I have been warned about this day. By the numerous doctors and nurses through the last seven months as Brecken has navigated the difficult path of Alpers Syndrome. As much as they "prepare" you for that day, you will never be ready. A day I knew was coming but always ignored the reality of it. WHY me? and WHY Brecken?
For most of the month of June, Brecken had been in and out of the hospital. And it was the last hospitalization we learned of his liver dysfunction and rapid progression of his disease. As we left the hospital for the last time June 29th, we made the decision we were not going to go back. We decided to put Brecken on hospice and care for him in the comfort of our own home. A decision that we made as a family, however having a nursing background, helped us guide our choice. I have to admit it was overwhelmingly terrifying.
Brecken's symptoms kept progressing. He lost his ability to smile and open his eyes. He slept 24 hours a day on his Bi Pap machine. And his body was ultimately giving up. It was extremely hard watching your baby boy fight for his life, knowing there was nothing myself or the medical team could cure or fix. There was no cure, no fix, and my baby was losing his fight. Something I was forced into accepting. Accepting my worst nightmare.
But as the moment came, the quiet morning of July 18, 2018, I held my sweet baby boy in my arms, rocked him, and held him tight. I sang him You Are My Sunshine, and told him it was OK, mommy and daddy were with him. A moment that was the hardest moment of my life. A indescribable painful hurt in the deepest parts of my soul. He was snuggled in close as he peacefully took his last breath and earned his wings in heaven. He fought so hard but he left too soon.
Brecken is MY superhero. He was a fighter. He is the strongest person I know. And he left that strength with me here on this earth. He gave me the strength to move forward. To be able to go through the motions of planning a funeral and celebration of life service. The strength to make a special resting place for him, his special yellow box. He gave me that strength to wake up in the morning and keep living. The strength to go to the park with his big brother. The strength to write for all of you, as raw as it gets. The strength that most people will never know of, and should never know about. Its a special strength, but I thank you Brecken. Thank you for showing me #breckenstrong. I miss you everyday and I love you "to infinity and bebob".