Friday, July 13, 2018
Finding Joy in the Journey
It was a wide mix of emotions bringing Brecken home from the hospital this time. A little bittersweet. After an exhausting seven days in the PICU, we came home June 29th. With our sweet Brecken by our side. We were back as a family of four all under one roof, exactly how its supposed to be. When you spend so much time at the hospital, HOME has a way of becoming a sort of medicine. Really good addicting, nostalgic medicine. And so we settled back into home, into life.
Brecken has been doing good since coming home. The lactulose medication is helping his ammonia level stay down, as far as we know, because we have plenty of dirty diapers to change! He still is very very sleepy some days, but luckily sleeps through the night with his Bi Pap machine. But as mentioned, his liver will continue to fight against him and unfortunately is failing him. We have decided to move forward to a more comfort cares approach for him. Focusing more on his comfort and forgoing a lot of the things that are more of just busy and unnecessary for him. We have a wonderful Children's Palliative and Hospice Team that has taken on Brecken and our future wishes for him. Which will also allow us to have 24/7 help and support as we try to keep him happy and comfortable at home in the hard days to come.
Time has become the most valuable blessing since coming home. Every second, every minute, every hour, every day. And it has been with time that we are finding the joy in this journey. A seven month journey that has been nothing short of difficult, painful, heartbreaking, stressful, and hard. This journey that has made me a stronger human being than I ever thought existed. The journey that has given me the time and opportunity to think about a lot of things. To learn a lot of things. And no matter the heartbreak and sadness we strive focus on our Joy, our sweet little Brecken Duane.
The joys while we soak up ever smile and laugh as we count to five or say sooo big. The joy of the sweet snuggles holding his chunky, squishy little "big boy" body. The joy of getting to see those eyes open up and watch Easton and Daddy running through the living room playing superheros or do jumping jacks. The joy of family and friend visits. The joy of arts and crafts projects with big brother. The joy of holding on to chap stick and whatever tube he can get his sweet little hands on. The joy in taking family photos together. The joy of stepping outside and watching big brother play in the pool or taking a walk around the neighborhood. The joys of dancing and singing in the living room with Mommy. And also the joy of changing dirty diapers, the suctioning, the med giving.
We found our joy. The joy of time and making memories with our sweet lovable little Brecken.
Because memories, they last forever.
** I continue to thank each and everyone of you for continuing on this journey. For checking in on my blog, for checking in on Brecken. For all those who have complimented me on my writing, thank you. I do this for myself, and it helps to share this with you, to be real, raw, and open. Because like I said, you are my village. And I need our village. :)