We hear so many times a day how strong we are. We are told what an amazing job we are doing. We listen with smiles on our faces and pain in our hearts as those around us who are watching our lives unfold share how much Ashley's story means to them.
Underneath it all...truth be told...
Dave and I are falling apart. There is no strength to be found. There is not an amazing job taking place. We are putting one foot in front of the other robotically
, methodically, routinely just because we have to. At night underneath the cover of darkness, while our children lay sleeping, our sweet Ashley Kate inches from my bedside, we are falling apart. A sobbing, heaving, crying, bundle of two parents whose hearts are breaking with very little resemblance to be found of what people think they see in us. The pain, the uncertainty, the loss, the everything is so raw. I know she's dying. I see it everyday. I don't say it aloud because the words only hurt my husbands broken heart, but I know he sees it too. He lets me sob in the darkness and doesn't even try to quiet me. He knows its all I can do. Its what I need to do. He holds my hand as the sounds of my cry break him even more.
Still we are trying. Trying to be positive. Trying to stay focused. Trying to find hope. Trying to remain grateful. Trying to keep going as each day brings us one day closer to the only we hope we do have of saving her...Transplant. The thought of it brings me more tears. The knowledge of what we are walking into this four years past the first one brings terror to my heart. It is no easy task. No easy undertaking. It is painful, and miserable, and uncertain, and so much more than I can share. Yet...it is all we have. It is her only hope. We are fighting to give her back the quality of life we know she can have. We have witnessed it. We have touched it. We have lived it. We have breathed it in with her and exhaled gratitude with every one of its breaths.
Underneath the pictures I choose to share in this journal our sweet Ashley's body is dwindling. It is weak and fragile and tiny and broken. There is not a space on her abdomen that is not covered with a bag, a dressing, a bandage, and piece of tape, or a square of gauze. Its in the times were we look underneath the covering of her clothing that it takes our breath away. As we desperately try to find a way to make it all work. Her line dressings won't stick. The scars from all the wounds have mutilated the surface to where I can't find a way to keep it sterile and adhered. Her ostomy
bags won't stay on because there is not enough space between the incisions
, the buttons, or the wounds for them to stick too. She leaks from every possible area you can imagine. As we change her diaper we gasp as we witness the sinking in of her abdomen to where she is nothing more than skin and bone. Literally skeletal. Where once we found her tummy tucked underneath we can no longer find an ounce of chub or muscle tone anywhere. Her liver is dying. Its obvious. It is struggling to metabolize all of the medications she is forced to take. Her skin is yellowed. The whites of her eyes are yellow. They leak bilirubin
. Her nose bleeds a mixture of blood and bili
. Her liver is so sore that when lifting or changing her you have to be conscious enough not to touch her in that area. She winces
with pain at the slightest of touch. You lift up the top layer of her hair and you find inches of balding scalp where the hair has fallen out over the last two months. Her heel is injured so deeply that healing is slow in coming. If she even had the strength to stand she would not be able to. It is a nasty wound that we are trying to keep infection free the very best that we can. And yet...
We still allow her to live. To go, to experience, to enjoy to the best of her ability. She smiles in the moments that she is awake. Where joy or happiness can be found she does indeed find it. If it be in a song, a movie, a page in one of her books, or the strong arms of her daddy as he rocks her in the chair. She is living because its the least we can do for our girl.
Underneath the pretty pictures and the beautiful clothes our tiny girl is fighting a battle as ugly as it gets. Hanging on with all that she has to a life that she once knew. My heart hurts in ways I wish I never knew, but it loves in ways many can only dream of. Each day I wake up, wipe the tears from my eyes, and wash their stains off my cheeks, as I anticipate spending time with our family. As I care for Ashley and her needs I imagine and plan what I can do to make our home more comfortable, more inviting, more welcoming to those coming back to it in mere hours. I busy myself taking care of my responsibilities and I smile while doing it realizing what a privilege
it is just to be back here. I "listen" to the requests of our youngest as she signs to me and I do all that I can to give her what she's asking for. I whisper a prayer of thanksgiving that her mind is alert and able to communicate and I throw in a request for enough strength to make through today. Until I can climb underneath my covers and allow the hurts to escape as I drift off to sleep next to the only other person in this entire world who can truly understand the place that I am in.
Underneath it all we are nothing. We have nothing. Not of our own selves. It is all by the grace of our God that we are making it through this time in our lives. If it appears as though things are going well and as though we are doing a good job I assure it is not us that you are seeing. If you could really see what its like underneath it all I think you might have a different opinion of what you are witnessing.