It hurts to look at this picture I took of my children tonight. My heart is breaking. My tears are falling. My everything inside of me hurts. Why is this happening? What is doing this to my daughter?
One week ago my sweet Ashley had the most beautiful color of skin, rosy cheeks, sparkly eyes, and soft pink lips. She was tiny and petite, happy and sweet. Tonight she is glowing and not from the joy that she usually radiates. Its from a sick and injured liver that for some unknown reason is taking the biggest hit of all from this illness. NO ONE knows why it is feeling the effects of the staph infected line the way that it is.
I'm struggling within myself and fighting the guilt that accompanies being a parent to a critically ill child. I have three children. Three amazing children who all deserve to be parented. They all deserve to have a mom who is available to them. They all need me to be present for them. Friday night I chose to attend Blake's baseball game and then to travel with Allie over to Dallas for her last volleyball tournament of the season. I chose to leave my sweet Ashley behind with her daddy and do my best to be present for my older kids. My heart was torn as I fought not to be so distracted by the events taking place at home with Ash that I failed to be in the moment with Blake and Allison. Today I saw my big kids for mere moments. Trying to squeeze in the usual conversations about homework, exams, practices, school, and schedules while still really listening to what they had to share with me in our minutes together. My heart is breaking. I know our life is spinning out of control once again and that I am powerless to stop it from happening. Tomorrow I will leave Ash here at the hospital with a grandparent and I will watch Blake play ball. I will stare at my Allison as she runs around the ball park with her BFF and I will do my best to absorb every inch of those children and burn the images into my memory forever. Then I will leave that field as my big kids go back home and I will make my way back into the walls of the hospital to do my best to make up the time I will have missed with my Ashley.
There is no good way to parent in this situation. I'm just doing the best I can and feeling as though I'm falling short in every way possible while trying to pull it off. And even though I'm struggling to be everywhere at once I am SOOOO thankful to be in our home town. MORE than words can ever say. My heart knows that it can and probably will get much worse as I am forced to leave the two for the one. It was never supposed to happen this way. It wasn't. We were supposed to raise our family together. They were supposed to be given a tiny treasure of a baby sister to watch grow up and not suffer. This is killing my heart.
Ash is about the same today. Not better, but not worse and so I'm going to say it was a positive day? I guess if you can pretend her bilirubin didn't climb another 4 points in the last 24 hours and that her blood cultures didn't come back positive for more growth. If you can ignore those issues then you can say that today was a good day. So...today was a good day. She didn't really decline like most are expecting her too. She is here and I am able to pick her body up and hold it close to mine. I do have the opportunity to rub her feet and kiss her cheeks. I did get to see my big kids kiss her goodnight and tell her they love her. I did watch my husband lean into her face for an "xmo" kiss. All of that is good.
Tomorrow I will be sitting behind that fence supporting my son... I will be as excited to see Allie's new cheer uniform as she is (and probably a little bit more because I'm so proud of her)... and I will hold my Ashley's hand as she drifts in and out of sleep after a long day of healing. Somewhere in there I will probably give my husband a hug or perhaps squeeze his hand as we pass and I will be grateful we were given another day to be a family of 5. I will attempt to whisper a prayer of thanksgiving for all I am being given as I fight off the urge to stomp and scream and beg for answers from the Father Who has given me so much more than I deserve to have.