Saturday is a Special Day

Saturday is a Special Day at Primary Children's. Family and friends from all over the surrounding states converge on the hospital for a weekend visit. For Hannah, it was no different. After an exhausting 3-hour long speech, physical, and occupational therapy session, the guests started to arrive. Notable moments in therapy: She remembers math (addition and multiplication) and made her way correctly through most of the alphabet. She picked up and began reading an I Spy book to her Mom, she crawled (on her own), and bowled. Her first approved Ride Pass may be as early as next week. Without getting too ahead of ourselves, it's hard not to imagine Hannah re-entering 2nd grade, along with her classmates.

When we arrived at the hospital today, we found Hannah exiting the playroom. On a Saturday, the playroom was very crowded and very loud. It didn't take long for Hannah to begin covering her ears and expressing her displeasure. Hannah went back to her room with her good friend Reese, and her brother Jaxton, in tow. The most noticeable difference today was the removal of her tracheotomy. Her words are more pronounced, the volume has increased, and they flow more freely.

The girls all took a turn, sitting next to Hannah and holding her hand, while they watched cartoons. As the others lost interest and began leaving the room, the nurses arrived to change Hannah's neck brace. There have been several procedures over the last few weeks that have been gut-wrenching to watch. This was no exception. When Hannah is reclined and cannot see what is about to happen, she becomes very anxious and upset. While this particular procedure was not as painful as others, it startled her, and she needed a lot of comfort from her mother and the nurses throughout the change, and afterwards.

Once the neck brace was changed, I thought it would be a good idea for Hannah to get out of that room and go for a ride. She was given a new wheelchair, a very standard one, for children who can hold themselves upright, as opposed to the much more intricate model she had been sporting the last week and a half. It's worth noting that she successfully pushes herself in the new wheelchair in short spurts. I loaded her up and we found the other kids back in the playroom. It was here she allowed me to hold her while she walked across the room. She tired quickly and asked to be in Mom's arms.

Then, Mom had a great idea. She asked Hannah if she would want to go down to the computers in the library and watch the CD of images Mr. Averett (1st grade teacher) had brought for Hannah. She was very excited to do this. When we returned to her room to get the video, the nurses mentioned that she may not be able to get into the library. Hannah immediately became animated, her words stuttering, but flowing. Her sentences were imperfect and hard to get out but she was confidently explaining to the nurses that she would get in the library to watch her pictures. She had done it before and would go again.

As we were waiting for the nurses to prepare her to go to the library, we made this small video of Hannah walking (attached). She also found the picture CD, even when her mother and I couldn't. When the nurse came in with her medicine, Hannah was sitting on my lap. She became upset when she could not reach her feeding tube, which had been flipped behind her neck. When I put the end of the tube back into her hand, she used all of her fingers to pop off the caps of her feeding tube. Turns out, she has become quite the helper, and likes to prepare her own tubes for medicine and feeding.

Hannah, her mom, and me went to the first floor to use the computers. Hannah efficiently removed the CD from the case, opened the CD drive on the computer, and loaded it. She played with the mouse for a moment to get it going before we intervened to help. The first run through, Hannah excitedly rambled off the names of each child that appeared on the screen. Anastasia and Felicity were particularly difficult but she knew them all by name. She seemed to remember many of the activities in the pictures by nodding or adding her own editorial.

Once finished, she was not ready to go. I asked her if she wanted to watch it again, to which she replied, "Yes." The second time through, the names of her classmates came more quickly and she smiled and laughed at many of the jokes we made about missing 1st grader teeth and red eyes. The closing screen is a letter from Mr. Averett to the parents of his 1st graders. I have included it at the bottom of this post. Hannah wanted me to read it out loud to her. As I did, I became choked up and it became harder for me to read. I looked at Hannah, fixated on the screen, and she had small tears welling up in the corners of her eyes. She bravely and discreetly used her small pointer fingers to wipe the tears from both of her cheeks. I asked, "Are those happy tears, Hannah?" She nodded with a strong chin. Seeing her emotion allowed me to begin to cry as well. After a few more sentences of the letter, her bravery gave way to deep sobs of sadness. You could see as her young mind and big heart took in the weight of what has happened to her and the loss she is feeling by not being with her fellow first graders. It was a rare moment of raw emotion from a little girl who somehow knows she is not where she needs to be. "Are you feeling sad, Hannah?" She confirmed that she was and her Mom held her and reassured her that she would be with them soon.

We exited the library and distracted her with the large fish hanging by the elevator doors. I tried convincing her they were real. She looked at me like I was dumb. As we entered her room, the Spaghetti-Os she had ordered for dinner had arrived. She is starting to try regular foods, all of them pureed. In my opinion, obliterating Spaghetti-Os does not affect the integrity of the product, and Hannah agreed. She ate them well.

As a family, we knew it was time to go. As usual, each of our girls told Hannah they loved her. When I expressed my love to her, she raised her fingers and kissed them and turned them my way. I responded, in Knott family tradition, by kissing the tips of my fingers, and throwing the kiss at her with force. Hannah's dad explained to her that by me throwing it at her, she would not be able to wipe it off. This explanation sent Hannah into an excited repeat cycle of reaching out, grabbing the kiss from the air, bringing the kiss to her lips, kissing her fingertips, and throwing it back at me. Like a broken record of the most perfect love song, she blew ten more kisses in robotic and determined fashion before the next bite of Spaghetti-Os smoothie interrupted her thoughts.

Mr. Averett's Letter to the Parents:

Dear Parents,

I give you back your child, the same child you confidently entrusted to my care last fall. I give her back pounds heavier, inches taller, months wiser, more responsible, and more mature than she was then. Although she would have attained her growth in spite of me, it has been my pleasure and privilege to watch her personality unfold day by day and marvel at this splendid miracle of development

I give her back reluctantly, for having spent nine months together in the narrow confines of a crowded classroom, we have grown close, have become a part of each other, and we shall always retain a little of each other. Ten years from now if we met on the street, your child and I, a light will shine to our eyes, a smile to our lips, and we shall feel the bond of understanding once more, this bond we feel today.

We have lived, loved, laughed, played, studied, learned, and enriched our lives together this year. I wish it could go on indefinitely, but give her back I must. Take care of her, for she is precious. Remember that I shall always be interested in your child and her destiny, wherever she goes, whatever she does, whoever she becomes. Her joys and sorrows I’ll be happy to share.

I shall always be her friend.

Peace,

Mr.Averett