As I lay my head on the pillow and wish for the haunting feelings inside of my head to stop I try and concentrate on the images that I took in here in our home over the weekend. My heart is grateful to have had this time at home with our children to do the ordinary, nothing special, kind of things. Ashley Kate continues to be ill and the longer it lingers the more my head and I'm afraid my heart begins to worry about her and where we will be spending this spring. The tears well up in my eyes as I watch her through the night and a lump forms in my throat because I so desperately want for this precious child of ours to feel good for a change. I don't want to write about those thoughts. I don't want to share them because I know how tired everyone is of the hard times and I want to share the good with you, not the bad. Please know that I am trying so desperately to keep writing, to keep positive, to keep going. Its been a struggle lately, but I'm still here and I am trying.
Some of my favorite images of this weekend were of the not so special moments that make my life so incredible. The image of my teenage son snuggled under a blanket and talking his mom and dad's ear off late into the night. Far past his and our bedtime, but far to precious to get up and retire for the night. As he rambled on and on I couldn't help but stare into his face. No longer any signs of that little boy who used to pile onto my lap each day as we awaited the arrival of his "Allie girl" and snuggled in close for his afternoon nap. That little boy has grown into a young man who I couldn't love more if I tried and who I couldn't possibly imagine being any more proud of than I already am. I could have listened to him talk all night, but eventually the 3 of us did climb into our beds and I lay there determined to never forget the way it feels to be one of his friends. What an honor it is to know that he considers us more than just his parents. I love him so, so much.
Then there is our Allison. Beautiful Allison Brooke who has spent her weekend trying to convince us that she is old enough to have those tiny ears of hers pierced. She'll be turning 11 years old next weekend and she's been begging since she was 6 to have it done. There's just something about poking holes in her body that I thought she needed to be old enough for. I don't know. Call me crazy or even un cool, but I wanted it to be something she looked forward to, something special, a milestone or something. Little does she know that come Friday afternoon as I pick her up from school she has an afternoon full of surprises coming her way. I couldn't help but turn my head away from her to hide the smile that crossed my face during each and every plea she's been making this weekend. She has no idea we have finally decided that this is the year. I can't wait to hand her that tiny jewelry box and see the look on her face as she opens up the pair we have chosen for her 11 birthday. Friday evening she will finally be wearing a pair of real earrings. I can still see that little girl prancing around the kitchen floor in my high heels with rings on every finger and rows of beads around her neck and plastic clip ons dangling from her ears as she announced that she was moving to Canada. Of all places! I have no idea where she dreamed that up, but I'll never forget it. Purse thrown over her shoulder and baby in her arms they were on there way and she would see me at lunch time. I still giggle at the thought of it. She was barely 3 that day and just as beautiful as she is today.
My favorite image of the weekend came in the form of a tiny baby girl who just didn't feel good cuddle up on her daddy's chest. She had snuggled in so tight and drifted off to sleep as her rocked her. I sat and stared. The minutes passed and I couldn't take my eyes off of the two of them. How he missed her while she was gone. So many nights he would say over and over again how he wished he were there to rock her to sleep. I love to watch him hold her. He loves her so very much. He is just as helpless and lost as I am as we watch her struggle the last few weeks. She's not getting well and there is nothing anyone can do for her. Her little body doesn't have a chance at fighting off whatever it is that has invaded causing her to cough all day and all night, vomit each hour, and feel so weak that she won't sit up. She can't keep any of her feeds down and her throat is raw and sore from the coughing and vomiting. Her immune system needs a break. Just long enough to get over this, but its impossible to give it one. She must stay immunosuppressed to keep her organs safe. Its an ugly place to be. Its so discouraging. Its been months and months and months since she was "healthy" and she is so tired of feeling bad. I can count the number of her good day in the last 5 months on my fingers. There haven't been that many. Still she trys.
At this hour our tiny pickle is strapped into her car seat for another night. She coughs for most of the night and vomits about 50/50 of it. She's losing so many calories and even though her liver numbers are climbing I am thankful for the TPN. Without it she would be losing large amounts of weight which would have us packing our bags. For now I run TPN overnight and a continuous stream of IV replacements to keep her from becoming dehydrated. Her pic line is still working. I am amazed at how long it has lasted. She lost one set of the sutures last week during a dressing change, but again I am amazed at how long they were holding. It was placed the first week of October and here we are in the middle of February with the same line. What a blessing! We've had to baby it a little bit here and there, but again I am grateful to have it. It allows us to keep her here at home and out of the hospital.
Our days at home are still as precious to me as always. The endless piles of laundry, raking of leaves, shooting hoops with the kids, tucking them in, holding Dave's hand, trips to the grocery store, car pool lines, and ball practices. I love it all. The nights happen to be long at this time as Ash struggles to find rest, but I am so thankful to be in our home with her. She is surrounded by those who love her and by the things that make her the most comfortable. If she has to be sick at least she's at home. For that I am happy. There is nothing her team of doctors can do to help her get well. They can't make her body stronger, there is no prescription to be given for this cold or whatever it is, and there is no magic that will heal her bowel. I'm beginning to wonder if it will ever recover.
Well, I'm going to try again. Try and close my eyes for a minute or two before Ash starts vomiting again. I just took a break and cleaned her up, turned off her feeds, and emptied her tummy again. We might get 30 minutes or so of rest before the next round (if were lucky). I'm pretty tired tonight. I think I stay that way these days. I must be getting old. At least my hairs no longer gray. Still trying to convince myself I'm not as old as I feel. Hope your weekends were blessed. Goodnight. Trish