They Just Keep Coming
We are seeing Ashley Kate begin to struggle a little more with each new infection. They are now coming on quicker, harder, and proving to be stronger all the time. The length of time we get between line infections is shorter and shorter. Maybe 2-3 weeks clear if we are lucky.
My heart is so, so heavy. I've watched her go from happy, giggly, and care free to absolutely miserable over this past week. They infections come on so fast. She was simply delightful and feeling so good last Tuesday when I put her to bed, but by Wednesday morning everything about her was different. She spent the next 3 days in her bed. I couldn't get her up at all. She didn't want to be touched, or held, or moved. She shook her head, "no, no, no" every time I needed to change her or give meds. The fevers were high, her heart rate high, and her respiration's high. Thankfully her oxygen saturation's were stable. We started meds mid morning on Friday and her fevers and vomiting didn't stop until last night. Today she has been fever free, but she's aching all over. She can't stand for us to touch her or transfer her. She is so miserable. Her body is swollen and heavy I think she just hurts. Its taking longer than we had hoped to see results.
Last night she asked to go driving and as we carried her to the car she complained about being touched. Once she settled into her seat she was content to be in the car. I drove and drove that car each time turning in the direction she requested. Dave and Allie started out with us on the drive, but we eventually took them home and since she wasn't ready to be home yet I kept on driving the neighborhoods with her. We listened to music and just kept on going. She pulled her blankets up under her chin and stared out the window as the world went by. We came home sometime after 11. Its so hard to deny her requests when she's so, so sick. I didn't want to look back someday and tell myself that I wished I had just taken her on the drive when she wanted to go.
At some point during our drive I began to cry. Its been a little while since I've broken down and cried over where this is all heading. I haven't allowed myself to really look clearly at our situation with Ash for several months now. I just keep getting up every day and living life. If I didn't force myself to keep going then I know I would curl up into a ball and never leave the house again. I have to make myself keep on keeping on. I don't talk much about this to anyone anymore and I rarely allow myself to write about it either...the truth...my heart is breaking. It is. I see that her body is so, so broken and its not going to get better. Things are not going to change and she will never be well. That is the truth, and the truth hurts. It hurts so deeply that my tears flow so heavy I feel as though I'm being washed away by them. I feel so helpless to change any of this. It is simply an impossible situation. The weight of the burden on my heart is so heavy I feel the physical presence of it and it is crushing. I know that one day she will be gone. Her body will wear out and she will be too tired to keep doing this. I feel this so much more when she's battling these infections. As long as she's laughing I can keep on pretending this is not the case, but the truth is this is still the case. Her smiles and laughter don't change anything...they just allow us not to dwell on it.
I've rarely shared the beginning of Ashley Kate's story. Seriously, so few people know the whole story and everything that God orchestrated in our lives and hers so that we would become a family. Last week I opened up and it all came spilling out. I was reminded by my own retelling of it how intimately God knows and loves Ash. I felt His presence come over me and I remembered how real He was in those moments and those days. To feel Him so close to know that it is truly Him there with you is a feeling I can't say I have felt often in my life, but in those early days I knew without a doubt that it was Him. It was by Him and Him alone that we became her parents. I will never doubt that.
Maybe the day will come that I will share her story. The whole story. It is beautiful. I had always hoped that she would tell it in her own time since it is her story and not mine, but that day may never come. I at least need to find the words to write it down even if I never choose to make it public. Blake and Allie deserve to know it all and I think they are to an age where they could begin to understand the harder parts of it now.
Anyway, I wanted to update everyone on how she was doing. Its not the update I had hoped to report, but she is resting peacefully tonight in her own bed. I'm grateful for that. She's not feeling well, but she is feeling safe. This med schedule is a little easier than our last one. We are only up once during the night and so we are getting to sleep a little bit more than we have in the last 3 months. We give meds at 4am, 10 am, 12pm, and 8pm. They are stored at room temperature and that allows me to sleep until 3:45ish and go back to bed by 5am. I'm so thankful for that! Our last schedule was brutal and I only slept for 2 uninterrupted hours a night for almost 12 weeks. Ugh!
I'm so hopeful we will clear this infection quicker than the last. So hopeful.