Ashley's Story

She will leave fingerprints all over your heart


Just Watching

As Dave and I sat quietly together at the dinner table this evening he broke the silence and said, "I could sit here and watch them forever." I nodded my head and fought back the crocodile tears that had formed in the corner of my eyes. Allie had gotten up off the couch and as she walked past Ashley Kate used her little hands to point to her big sister and then her arms reached up as she "asked" to be picked up.! Dave and I melted as we watched the two of them snuggle in the middle of the family room. There is nothing sweeter than to be in our home and see the children hanging out together. Just an hour earlier we had watched her big brother lay in the floor with her with his head propped up in his hands. He was facing her, down on her level, so that they could "talk". I can't express to you the way it feels inside to see the way they love her.

Such burdens are carried on their young hearts when Ash is sick. They handle themselves so well. So mature. You might not notice when you see them how heavy their hearts are, but I notice. I hear it in their voices. I know they hurt so much more than they express. They are scared for her and we can never promise them that she will be coming back to grow up along with them. Then the moment they hear word that she is coming home the heaviness begins to lift. The lighthearted silliness of their personalities begins to return and the joy in their eyes can be seen from across the room. All is well again when mom and Ashley Kate return. Their world is right and they worry no more.

We have enjoyed some precious days together lately. From Thursday's do nothing but hang out and play to the trip on Friday to watching our beloved Tarheels play and win the final tournament of this season Saturday and Sunday. We spent the evenings playing games, laughing lots, and cooking some of their favorite meals. This afternoon we traveled back home and have begun our holiday decorating. It will take a few days. Tomorrow while they are in school I will do most of it, and then in the evening we will decorate the large tree. They have finished their trees and my eyes sparkled as I tucked them in tonight and saw the lights of their Christmas tress twinkling in the bedrooms. The girls were quick to fall asleep to the sounds of a Disney Christmas as I finished scratching Allie's back and then kissing those puffy cheeks of our baby. Blake lay in his bed thinking about the games that were played this weekend and trying to get to sleep. I snuggled close to him and told him how very proud I was to be his mom as we lay staring at the lights on his tree.

The house smells so yummy tonight. Dave just finished baking a huge batch of pumpkin seeds so that he and the kids would have them to munch on this week. The lights of the candles on the mantle are glowing and the relaxing sounds of instrumental carols are playing. Such peace floods my soul as I sit here in this room. I love nothing more than to know my children are safely tucked into their beds. All snuggled in and warm as they dream.

Its been so hard the last 6 weeks. Never knowing what would happen to her tomorrow. I still don't know what tomorrow holds for our baby, but just being home reassures me that it may actually be alright. I keep reminding myself of the long path she has ahead of her to healing, but then remember how far she has come the last couple of weeks. She is getting stronger every day. The mornings tend to be hard on her. As she wakes and adjusts to the feeling inside of her gut and gets a handle on all of her meds. She spends much of the mornings struggling, but by afternoon she is happy and joyful. Her feeds have gotten to 45cc/hour(the goal being 70) and her TPN is down to 400cc being infused over just 2 hours. Our hope is to have her weaned off of the TPN and on full feedings by Christmas Eve so that our magical trip may take place. I'm sure we could still travel if our goals were not met, but Dave and I feel she would be in a much safer position if we did not have to access a line on the trip. Her IV replacements are about the same. Not much improvement in that area yet. Overall I think she is healing and doing as well as can be expected after all she's been through. We are very, very proud of her.

I have only given her one dose of the blood pressure med daily since the vomiting began and I think it is improving. The team told me our options were very limited and that they wanted me to keep trying this med and hoped her body would adjust to it. I agreed to only give her the one dose a day and told them we would see how she did over the weekend. The coordinator agreed and told me I knew her best so to use my better judgement. Her pressure seems to be controlled just as well with the one dose.

I really wish we could sit here forever and just watch. Observe our family as each member interacts with the other. It truly is the most beautiful thing. Have you ever sat still and just watched your children and appreciated being an observer in that moment? I am so grateful to be here with them all tonight. I have missed so much, and don't want to miss a moment more. Now that I am home I hope to have the opportunity to keep our littlest one here and sit back and watch the three of them together just a little bit longer.

Goodnight my friends. I hope you enjoyed your weekend and your families. Life is such a gift. Don't you agree? Trish


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