It has been said at Christmas time, “It is not what is under the tree, but who is around the tree with you that counts.” That is most accurate for our family this year as we celebrate Christmas from Craig Hospital together. Even without a tree. Julie, me, Stephen and his girlfriend Peisha gathered together on Christmas day in Whitney’s room. We all understood that this year would not be typical in terms of the number of gifts we normally would exchange or family traditions we always enjoyed. We did receive cards Whitney made for each of us. So the emphasis was on the simple basics of being together, hugs, laughing and sharing some heartbeats.
Despite what we have experienced in the last four and a half months, December has brought us many good memories. Many of them revolve around our gratefulness that Whitney is alive and with us. December also brought many positive developments for Whitney. While it is difficult to accurately categorize or describe each and every detail that takes place, no item is insignificant. Recently, her progress began unexpectedly appearing in the small routine schemes of the day. When I least expect it, she has shown more consistent times of alertness and being engaged in the moment. Her personality has begun to substantially reappear through verbal exchanges and in the physical idiosyncrasies that are unique to Whitney. Sometimes it is in the way she laughs or phrases a few words that are distinctly expressive in her voice. Other times it is in her evolving overall body language. She now rolls her eyes and smiles at some of my attempts to humor her. It was great to see for the first time the other day, the cute way she scrunches her nose when she dislikes something. During this December, her nutrition intake has progressed through all levels from basic pureed to a regular diet currently.
These episodes of broad progress are not isolated.
Let me share some specific “First Time Since the Accident” episodes of progress that we celebrated in this December to remember:
7th- PT had her prone on her stomach for the first time doing both physical and cognitive activities at the same time. She had a radial nerve transmission test on left arm that revealed good electrical conduction to her hand. We took a Christmas light tour on Craig bus complete with carols, hot chocolate and cookies – this was her first time outside a medical facility & the first ride in something other than an ambulance on a gurney since her accident. She absolutely enjoyed it.
8th – This is the day she got her first look into a mirror. This is my daughter who I love more than the world and have been through much together over the years. This was a first for me too as a dad. Much thought and planning has gone into this reveal and I had a spectrum of thoughts and responses prepared for how she might react. I speculated on what this young twenty-five year olds self-image would be a few minutes after this milestone event. Before we proceeded, she let us know that with all the talk over time of removing and replacing her skull bone flap, she was concerned that she has exposed metal on her head (think ‘Terminator’ look) where her craniotomy took place. We assured her that was not the case. I was humbled as I stood beside her and she got her first look. Whitney was like a parent viewing their newborn with wonder for the first time. She spent several moments in peaceful astonishment scrutinizing every inch of skin subjected to the trauma - the scars, scratches, teeth, eyes, neck and throat area that she could see and feel with her hand…over and over again. She was most surprised at how she looked with short hair. (She still has not seen a picture of herself with a shaved head at this point.) Her acceptance was serene and poised. She let me know, as different as she looks now, it was not as bad as she had imagined. It was going to be all right. She seems to always melt my heart. This also presented another first - she had her first FaceTime video chat with Julie.
12th - She got her first session for her right hand on the AMADEO built by Tyromotion. It is a clinically tried, tested and the most advanced robotic-assisted finger-hand therapy device available. It is fascinating. (http://tyromotion.com/en/products/amadeo) That evening, we took a Craig bus with several others to go Christmas shopping at Super Target. She was just in awe as we entered this massive store for her first “real world” trip since August. The highlight of the evening was getting to eat dinner out that was not hospital food. What does this girl who was near death and has anticipated for four months where the first place she would choose to indulge her taste buds? To her delight = Chick Fil A. She savored every bite and had the biggest grin on her face the entire evening.
13th – in her first Music Therapy session she bravely attempted a few lines of “Away in a Manger”. It was a very delicate and reserved rendition as we heard her singing voice for the first time.
14th - Whitney met with the team ophthalmologist regarding her injured right eye. He did all the tests she had done previously and then a few more new ones. His professional conclusion is that she does have vision in the questionable right eye. It is the first time since the accident her visual acuity is assessed. She presents 20/50 in the left and 20/60 in the right.
15th – during PT, from a sitting position, she places her hands on a table in front of her. As she leans forward, her hands slide forward across the tabletop and supports her effort to try and stand. With the assistance of her PT, the table and my cheerleading, Whitney painfully puts her full weight on her own legs and stands upright for about 10 seconds for the first time.
16th – On this day, I get trained to transfer her to the couch in her room. Until this day, her bottom has known no other sitting surface other than a bed mattress, gel wheelchair seat, toilet seat or PT padded therapy tables. Whitney sat her bottom on a comfortable couch for the first time and chilled. Her response included a very big smile, a deep sigh and relaxed body language that acknowledged “Ahhhh, hello old friend…I remember what this feels like”.
18th – Her right arm is continuing to respond, yet somewhat slow, to therapy. On this day, she is asked to raise both arms upward, like signaling a touchdown. Her left arm goes up quickly to above her ear level, but sagging at the elbow. She struggles to get her right arm raised above shoulder level. Overall it ends up looking like she is forming the letter “W”. We celebrate the right arm progress. So for the first time, she forms the alphabet letter of her name – “W”. In the near future, we hope to do the “YMCA” song.
19th – this was an eventful day because she was cleared to have the feeding tube removed from her abdomen. The extrication took place at noon at her bedside as Julie held her hand. It was simple, quick and she was over the pain in just a couple of minuets. This marked the first day that she did not have a medical apparatus inserted or attached in some capacity. She felt free for the first time in a while.
20th – in her PT session, we rolled her wheelchair up into one end of a device that could mechanically adjust the height and width of the parallel bars. Whitney practiced the progression of rising from her wheelchair to a standing position. The PT assisted while she held onto the parallel bars for stability. This was so exciting to see this aspect of getting prepared to walk at some point.
23rd – Whitney gave herself, and us, an early Christmas present this day. With the skilled encouragement and assistance of her PT, Whitney stood at the parallel bars ready to try taking a step. She had to say aloud, “I can do this” several times. She was able to stand two different times from her wheelchair and hold onto the bars. She was anticipating great pain associated with this type of activity. Within these two efforts of four and seven minutes, she placed her entire weight on the weak leg that suffered the compound fracture and lifted her left foot off the ground and place it forward. It is called a step. It was a step in the right direction. It is one small step for Whitney, and one giant leap toward walking again. The PT congratulated her. He assisted her back into her chair and told her how courageous she was to not cry on these hard efforts. He then asked, “What is it you want?” Her reply, “I want to walk.” This was very exciting for all of us.
Although she still has some struggles in the neurological arena, each day brings evidence of improvement. The winter has been harsh outdoors, but inside Craig Hospital, Whitney’s brave journey with so many “December Firsts” has warmed our hearts.
Friendly reminders...."Go Fund Me" campaign for Whitney: https://www.gofundme.com/4whitney
Send your cards, letter and care packages to:
Scott, Julie, Whitney & Stephen Bennefield
5643 S. Sicily Circle, Aurora CO 80015