The Christmas Snowman

All day Tuesday Juliana anticipated Chris’s return. She thought it would be early, and then she thought it would be late and then she just kept watch for whenever he might walk in. She spent the afternoon out to lunch with Sarah and I told her that Chris would not be home until sometime after they returned.  Ten minutes after she walked in the door, got comfortable on the couch in the living room with her back to the door, Chris quietly walked through it. The room was full of people grinning ear to ear at his arrival but we were even more eager to see Juliana’s reaction. She had been planning what she was going to say ranging from, “I missed you and I love you” to “Did you do well and did you see my videos?” But when he slid around the side of the couch and knelt down in front of her as if he were going to propose again Juliana broke our smiling silence with a surprised and honest ... "THANK GOD!"  We erupted in laughter and they hugged and kissed while we all watched contentedly. With homecomings such as that it almost makes the leaving worth it—almost.

Once the initial affection cooled down Chris did his typical assessment of her state. He was happy with the flexibility in her feet, they truly do feel as limber as they can be. Now that she finally has her right AFO she is walking with reliable stability but she has to adjust to the feel of it. Her arms are loose, her hand, not too bad, but not as open as we hoped. Her skin is clearing up and her eye is still slightly open at times.  She has put on quite a bit of weight which she doesn’t seem to care about at all so we try not to be too concerned in her presence. We were warned that it was a likely side effect of the baclofen but it seemed a superficial risk. But even though that attribute of her appearance has changed, Chris was sure to tell her that it didn’t make her any less beautiful and they should start dieting and exercising together.  (Maybe we could make it a house rule.) 

The holidays certainly don’t make it any easier and with Juliana’s cake ball snowmen being assembled each day, she simply can’t resist. She was really happy to put them together but her constant obsession with wanting to eat them (Red Velvet) was reminding me of a scene from Twilight. Most of them survived to reach their intended recipient but it was not without significant bodyguards to protect their tiny lives. If it wasn’t the bodies of cake she stalked it was the Reese's hats she was craving. Take a look 'The Christmas Snowman' video  and see how much care and detail went into the homemade Christmas gifts. Since she couldn’t make one for every one of you, consider this view into the process as close as she could get. This process was lengthy and filled with drama and because it required quite a bit of fine motor skills and patience. At one point Juliana said, "Even though it’s fun to call guys’ jerks’, I won’t because you gave me a Reese's."  Nothing makes her day say ‘All better’ more than a little bit of chocolate!

Juliana is truly enjoying her return to Facebook although I must be clear; she is not doing the typing just yet. I am confident she will get there, and in fact am confident that most of her abilities will return and I am less impatient for that day to come. I simply want to continue to knock things off the list of needed improvements before I am too old to attend to her. Don’t tell me I am not old, I know that I am capable now but I have been taught a serious lesson that any day can be the one that changes your life forever so there is no time to waste. The funny thing is, that one thing you shouldn’t waste is the one thing you cannot rush. I must put this on my list to discuss with God one day.

All the kids are preparing for Christmas as I am sure you and your families are as
well. Juliana has received cards, letters, presents, candy, flowers, jewelry—so many tokens of love and affection that it is extremely heartwarming to see.  She told me to make sure I thanked everyone for her here in my blog so from Juliana to all of those who have shared a gift or message with her, “Thank You.”  Here in our home Christmas has been modified through the years to make accommodations for Juliana’s reduced mobility, but each time a holiday passes we are put in a position to compare to where she was the year before. Once the silly notion of "one year" time limit was removed from our expectations—truly removed,  sadness, denial, guilt, anguish and all—we were able to see how far she has come and appreciate the small steps she has taken to get here. For example, she first came home from the hospital just before Christmas 2009. We spent Christmas Eve at my sister’s house as usual but Juliana was tethered to her only source of food, her G-Tube and an IV pole for administering it every 3 hours. She was also on a schedule of reclining her very large wheelchair with headrest as well. She had not spoken yet, only had her eye open for periods of time during the day and didn’t initiate any communication at all. This year we will still have difficulty understanding her but her attempts are nonstop. Her food is just about anything she wants and we may just leave the wheelchair at home and take the walker only. So many things to be grateful for this holiday season and I only need to look back to be forever grateful I can look forward.  (Funny how the holidays do that to you.) It’s as if this time has just snuck around the corner to surprise me and I can only think to say, THANK GOD.

Merry Christmas everyone, to your family from ours.  This year it’s also from Juliana.

READ:  Where it all began, in For Juliana: Almost to the Almost, One Penny at a Time, by Janet Spencer Barnes.