It stands for Physician's Order for Life-Sustaining Treatment. It is given to those with often terminal conditions....as a type of Advanced Directive....to help first responders, doctors and nurses all know your wishes.
I love seeing all of those perfect arm rolls!
Once we were home, I took that form and ripped it up. I didn't even want to think about it. At that time, we kept Adalyn at a "full code" meaning, we wanted to do all we could to keep her. We were going to fight for her....every step of the way.
At this time last year, we were at Primary Children's once more for appointments....when that form was once more placed in front of us. Adalyn's condition was getting worse....her seizures were becoming life-threatening at the rate they were progressing. The medicines she was on and had gone through...weren't working. Her little lungs, for some reason that confounded everyone....continued to decline.
Once more...we said we would think about it. In my mind....I wanted to push out the thought completely. How could I ever sign that?? I couldn't even let myself go there. I wasn't done fighting.
Little did we know, our time with our sweet girl was already ticking down. And within a month and a half....we would have to re-visit this form.... The time was coming when we would realize our fight for Adalyn needed to be different...
As October and November draw near....I want to hide. To somehow run backwards fast enough to stop these months from coming.
Those months were beautiful....sacred...and so very tender. Yet...they were also incredibly hard, devastating....and heart breaking
I'm scared of re-living those days. Scared of the year mark that will come in November.
As I have thought about all our emotions...I have had a few thoughts. I think, all too often, there is a stereo-type among us. A feeling that we all need to put on our happy faces....that we shouldn't admit to have a hard time....to being vulnerable...to having faults..or to being afraid. When we do...others often feel the need to "fix you" to make you happy and perfect once more.
Throughout this past year.....and in thinking of the days to come....I think more and more of all the imperfections I have. I fall apart quite frequently. I'm anxious. I'm often scared. Some moments trigger PTSD from events of last year. I feel the breaks in my heart. I feel unsure of myself...and the person in the mirror seems so foreign to me. At times I feel lost...and my yearning to hold Adalyn once more...to breathe in her sweet smell feels overpowering.
There are no words to take those feelings away. No sudden change that will take away that grief....or change what we went through.
And honestly....I wouldn't want anyone to.
Conference weekend last October will forever hold one of my favorite views!
Adalyn's entire life.....and even in the months since she has been gone....I have felt the greatest depths of gratitude. I have felt greater empathy for those around me. I have found the beauty in the small and simple. I see the more clearly the good. I have loved intensely. I sit in the shower at times...and stare at my growing belly and see what a true miracle this little life already is...
The days we are walking through have been the darkest I have ever walked...yet I have been acutely aware of the beautiful lights we have been sent. Acutely aware of the prayers on our behalf. Acutely aware of the incredible people we have in our lives.
I say these things because I think there is something beautiful about imperfection....and it shouldn't be shameful.
I think to have true joy, we will have a fullness of sorrow. A fullness of grief. A fullness of pain.... Because experiencing those things, shows us the absolute miracle of light. It shows the comfort in friends and family...Most of all...it shows us the power of love. Joy doesn't mean we never experience dark days. I think it's rather the opposite. It means we've walked through the dark days... and we've received our scars. The pain of those days doesn't disappear. Instead, it is all apart of who we have become...but the love we've gained through those dark days is far greater, deeper and more beautiful than before. Maybe joy is knowing and trusting that there will come a day when God heals our hearts perfectly.
I think I now understand what it means to "Mourn with those that mourn" It isn't about trying to say words to take away another's pain. It isn't about "fixing" anyone. It's simply being present. Holding a hand. Crying with them. Reminding them that they are loved.
It's admitting that some things we face are absolutely, undeniably hard.... Admitting it's okay to have a hard time. It's okay.. (as the amazing author Brene Brown would say)...To have the courage to be vulnerable.
I am completely imperfect. I miss Adalyn more than my words could ever convey. I question myself so very often...wondering if she knew in each and every moment how much she was wanted....and deeply loved. I still pray for strength to get through each day.
I'm not implying that our imperfections should rule and control our lives. Nor do I want to stay feeling the way I do forever. I want to be better. For Adalyn...for David...and for our growing little boy...but I'm trying to remind myself to be patient with where I am now...
Maybe sometimes....imperfect is exactly what we need to be.
I think maybe....it is those very imperfections that help us to find God...to feel Him near. To feel His hands of comfort holding our tender hearts.
To you my sweet Addie Grace....goodness how the days feel so long without you! As fall creeps in..so do the fears on my heart I had last year at this time. The fear of losing you still haunts me...even as we are slowly coming up on the year mark of you being gone.
I've had so many moments where I've felt you so powerfully...almost as if I could close my eyes and feel you in my arms...Yet I'm realizing that it's like trying to hold the rays of the sun....or grasp the breeze...I simply can't...as much as I want to in every way. I have to just let myself soak up the feeling of your closeness....Knowing you are never far. Trusting in the day I will get to hold you again. I imagine you spending time with your little brother....I'm certain he loves you so much! Last week...on an evening when Daddy and I were especially missing you...we went to the cemetery and read books to you and your brother. It was good for our hearts.
Last week...on an evening when Daddy and I were especially missing you...we went to the cemetery and read books to you and your brother. It was good for our hearts.
I am ever grateful for your beautiful life and light my darling. We have so many projects in the works for both you and your brother...I'm hoping they all come together soon! Please stay extra close to us as these next two months come. I need you so very much.
I love you Adalyn, always and completely.
XOXO
Mom
