Tuesday, June 26, 2018
Staying Strong at Your Weakest
I would have to say this hospital stay, going on day 6, has been by far the hardest. Its been emotionally, physically exhausting. And when you don't think you have enough strength to keep going, you find just a little more and well, somehow keep going. You stay strong for your baby, who is fighting one of the biggest fights of all. You stay strong for your three year old, who when the tears don't go away, keeps giving you kisses to make you happy and feel better. You stay strong for your husband, who is just as weak as you are, but you put your arm around each other and help each other just stay afloat. And you stay strong for your family and friends so you can sit down and let them know whats going on, just trying to get through conversations when inside you are falling apart.
As mentioned in my last post we brought Brecken into the hospital Friday because of respiratory or breathing difficulty. And after much further testing and information we found a little bit more. Brecken has been very very sleepy. He slept for almost four days. Not medically induced but just by himself. We lost the smiles and the eye contact, we lost the interaction. We did our best to keep him comfortable, and kept him on bi pap,to add a little bit more pressure and help breathing. We have given him a few medications that hopefully might help in the short term.
But what we have found out is that, unfortunately, his Alpers Syndrome is progressing. His liver is not able to function as it should and his brain is not functioning as it should. And there is nothing more medically that we can do. We as a family have had some really hard decisions and really hard discussions with his doctors and team about what we want for Brecken going forward. What is helping Brecken stay comfortable and pain free, and what is not. What is making Brecken happy, and what is making us happy for Brecken.
We wish he knew exactly how much more time we have with this sweet boy, but we don't. We wish we could give him medications or treatments to fix and make things better. Heck we just want a cure. But we don't. And its been in that moment these past few days, we feel helpless. I honestly did not think that I would ever see that sweet smile again. I felt feelings I didn't think I had. And its the worst thing in the world. Simply the worst. Nothing can make it better, no such thing as band-aids.
But then this morning at 7am, Brecken woke up crying. I took him and snuggled him, and he woke up. He opened his eyes and we talked. We counted to five, and I heard that sweet little laugh. I saw that sweet little smile. And I realized, not matter how much time we have left with him, he changed this world and he changed my life. He shows us the power of a smile. He shows us strength. He shows us that no matter the fight, no matter the journey, no matter what, we love and we smile. And I find peace in that. Brecken is doing above and beyond what he has been sent here to do, and he continues to amaze us each and every minute of each and every day.
Our number one goal at his time is... HOME. We have a lot of loose ends to tie up and a few more decisions and things to consider, but Brecken is coming HOME with us. Just where he needs to be. The future for Brecken is very unknown, but Alpers is taking him away from us. We will do our best to keep him comfortable and happy. We will make sure we give extra snuggles, extra kisses, extra everything. We will take each and every single #BreckenSmile we can get. Come days, weeks, or months we will stay strong for Brecken.
And thank you. Thank you to every one of you for continuing on this journey of mine. This journey is not done, nor will it ever be. But it takes a village. And no matter the hardship, no matter the pain, no matter how strong you can be, I am not alone. I know I have you. And right now I need my village.