Juliana was an avid reader as a child so I shared with her things I had written and she was instantly a supporter. Whether it was because she really enjoyed it or saw the enjoyment I took in her reading it, the result was the same: she wanted to help me achieve my dream. As a young adult she did her best to give me time by insisting I sneak away to a quiet corner of the house while she held down the busy fort. But the many responsibilities on my plate made ‘writing time’ feel like an unaffordable guilty pleasure. Then, in a horrible twist of fate Juliana was able to give me what I needed: Time to write.
As the Facebook updates began to contain my emotions as well as the updates, I set the notebook aside and the blog of For Juliana was born but I hoped would not have to last. I was naively thinking that Juliana was going to be able to speak for herself and tell everyone how great she was doing as soon as she ‘woke up'. Many of you witnessed my realization of how wrong I was, keeping perfect time with the pace of Juliana’s recovery. I wrote about the details of her day, the impact it had on mine and the residuals the support provided. There has always been a considerable dark side behind the words I shared on my daughter’s behalf but by writing it down I was able to deal with it appropriately, evaluate it realistically, and present it positively. Often this ‘sunny side up summarization’ was interpreted as an indication that I wasn’t deeply wounded or consistently tortured by the grief of my loss or the gravity of my choices. Although the criticism of my ‘spin’ on events was isolated, they were accompanied by public and inflammatory accusations ranging from having limited intelligence and insight to having a fame seeking agenda. If that turmoil began to rattle me, I had swift support from my husband, my children, my family and friends and even Chris and Juliana. They were all ready to remind me that the recovery that consumed and transformed my life was being handled the best way I knew how. They reminded me that those that believed I was less contemplative or caring than I was didn’t really know me at all and were not part of my life for that very reason.
Along the way, you indulged my need to express and embraced the daughter that I missed. You saw a family learn how to reconstruct their lives to revolve differently around the girl that gravitationally pulled me since March of 1986. You read into the drama, recognizing the stress fractures, and supported the imperfect people that we openly admit to being. You watched with the nation and to some degree, the world, as Chris Medina was spotlighted for the hero he was quietly becoming for being a dedicated loving partner and a genuinely good man to my daughter. You cheered along with our successes, cried with our failures and forgave us our indiscretions. You literally saved me from despair simply by having someone 'listen' to me. We have been exposed to extreme generosity in ways far more permanent than the money that cushions Juliana's future.
I have been reading back through the 3 plus years of updates and if I were to sum it up in one word it would have to be “Exhausting” That was true on so many levels starting with just the simple act of reading it all! (462 pages counting this entry). I was amused at how I apologized a few times in the beginning for writing too much only to give up apologizing right along with the brief updates! This update is in fact so long that I am posting it in two parts.
The most disruptive for me has been the emotional exhaustion. Each entry I read reminded me what else was happening at the time. That includes the depression I was avoiding, the schedule I was juggling, the children I was raising, the job I was maintaining and the controversy I was fighting. I tried to keep a respectful distance from public battle grounds through lack of engagement in the controversies believing it was an unnecessary distraction from my purpose (and an ill placed opportunity for objection). Simultaneous to Juliana’s recovery and the public blogging of those details, I was required to learn how to re-blend a family that was happily and intentionally living separate lives specifically because they couldn't agree on the foundational aspects of life. I found ways to creatively describe my frustration with differing opinions and open criticism, forming my own ways to air my grievances. Living through the fragility of life and the work required to reclaim it gave me the strength and confidence to stop apologizing for choices I thought long and hard about making and before I knew it, emotional exhaustion gave way to emotional endurance.
But even more exhausting to recall are the details about the incredible and often miraculous recovery Juliana is experiencing. If I ever forget how far Juli has come, what she has endured or the challenges she has faced, if nothing else I have many (MANY) words to remind me. From a virtual death sentence to painting, vacationing, and horseback riding ... it’s been a long yet productive few years full of adjustments and changes to match her (thank God) improving health. For months her diet consisted of cans of Jevity hung from a bag on an IV pole through a tube to her stomach. With the aid of a dietician Juliana was able to progress to being fed the proper balance of nutrition for healing and sufficient calories to match her rapid metabolism. And then finally after the last year and a half of steady weight gain signifying the slowed metabolism of a body chemistry that is no longer using its calories for healing, Juliana is able to take some control over her food intake and as a result, a healthier lifestyle. She can now feed herself entirely, removing the childish stigma she felt having another adult bring a fork to her mouth and wipe her face for her. She can select her own foods from a list of healthy balanced choices focusing on protein and fiber, minimizing calories sugar and carbohydrates. Her body is chemically asking us to answer its new needs and Juliana is able to actively engage in that answer.
Becoming ambulatory has been an incredible journey including more stops and starts than Lindsey Lohan’s career! It began with fighting through daily agonizing muscle stretches to fit inside plastic form fitting braces so that she could stand and then walk. When all efforts could not combat the injured brain’s tendency to contort the shape of her feet into unusable positions, she endured multiple surgeries to release the tendons in her feet for proper foot shape. And most severely impeding her physical process was the pervasive ‘tone’ in her muscles complete with constant spasms and positions counterproductive to even sitting in a chair, much less walking. This led her to the surgery we hoped to avoid of permanent implantation of a device to distribute muscle relaxer into her spine. As dramatic and delayed as that decision was to make, the results were proof that the risk paid off. Although her balance still impedes her ability to walk on her own, the future has great promise because the past had great results.
Recalling the evolution of her communication has been a bit more challenging to accept and the exhaustion on that skill is still a daily cardio workout. But from comatose to responding to commands was a huge victory that was celebrated in video and medical records changing the course of her recovery. Quality of communication soon followed from responding through thumbs up and thumbs down all the way to speaking or writing every word that comes into her head (heaven help us). The results are honest, blunt and often humorous. The other day when Juliana, Cheyenne and I were talking about the ability to filter the things that come into our heads before they come out of our mouth or typed on a screen, Cheyenne admit that her filter has much larger openings than most people to which Juliana amusingly added, “Yeah well, I think I broke my filter in the car accident.” Our laughter indicated our agreement on that one.
We still have a long way to go on the quality of her speech and have been given no positive prognosis on her condition of Dysarthria. When Juliana ‘graduated’ from RIC this week, ending PT, OT and Speech therapy for the foreseeable future each discipline left us with suggestions for continued improvement. Her speech therapist offered these:
“She needs dedicated practice time each day” and “She needs to be given queues to follow all the steps of clear speech” and “Record her speaking and play it back for her later or someone who wasn’t present to see if they understand it”. Each of those really good suggestions is met with equally bad reaction from the person I now am the default speech therapist to. Even though conversation can be a mutually time consuming and tolerance consuming effort, if I evaluate it retroactively I can put the point in time activity of maximum frustration into overall perspective.
The most important evolution has been in her spirit. I might have missed it entirely because my position in her life requires that I am the ‘bad guy’ by being the administrator of her daily unpleasant routines such as therapy, exercise, independence and expectations. I feel her intermittent anger at me for imposing those requirements and truly seeing her increasing buoyancy is veiled by my jealousy that I am never given the chance to play the ‘good guy’. That role was strategically given to the men in her life: her fiancé so he could return to treating her like the princess on a pedestal that she had come to know before the accident, and her father since his tender heart could not withstand the begging of a charming, wounded daughter professing her hatred for all things therapeutic. I would almost not notice that she has steadily become happier because my time with Juliana is the working part of her day; the part she enjoys the least. When I am of clear mind and steady constitution I can accept what I learned to be true: Until your kids are mature enough to understand the choices you made, parenting is a popularity contest one parent must be strong enough to expect they may lose and do what they think is right anyway. During the last two years I have worn my father’s cliché like a strait jacket three sizes too small: ”It’s nice to be liked, but it’s not necessary.” I take my happy moments with Juliana after the requirements of the day are met, in the evenings with painting or watching her favorite shows or playing a game with friends and family. I get that time to reflect on the fact that she is now engaging willingly in activities where formerly bargaining was the only way to gain her attendance. She no longer expects to lay in the recliner, watching the clock waiting for 7pm so she can go to bed. Now it’s me watching the clock as it approaches 11pm begging her to log off the computer so I can go to bed! If that weren't happy enough I get more insight into her mentally improving state by reading the cute messages she writes to others in Facebook by her own hand and of her own thoughts. The other night she even wrote a message to a friend saying that she is ‘happy’. Unsolicited and unexpected but she was just simply happy. That whole mental and physical process from reading to responding is helping her improve with achievements that she can see and that is making her happy.
And because of all of these changes, all of this improvement from the blood sweat and tears and a whole lot of exhaustion, there is something that I want to tell you but I would hate to keep you any longer this time so,
To Be Continued...