Warning: Darkness Ahead....

For those of you who have been along for the whole bumpy ride through my positive attitude as well as my moments of desperation, you won’t be at all surprised or alarmed to know that its been a rough couple of days on the living with a daughter with a brain injury front. 

In fact, from all of the people that we have been in contact with I can honestly say that the stories of their recoveries have never sounded quite the same as any others. That leaves me as comforted as confounded and when I am seeking solidarity, I find there is none. We have changed, increased and even stopped her antidepressants with very little difference in results. We have given her medicines and vitamins and treatments to assist in reducing her agitation and still THAT prevails. We have increased her therapy, decreased her therapy and gave in to pleas and even cancelled her therapy. And in spite of all of that so much of her day looks the same.

Today I bargained with her to spend the day just doing girl things with my four daughters, and I would cancel her therapies for the day. Her end of the bargain was to try to hold onto the happiness she felt about the cancellation throughout her day. If I reminded her, she forced out a smile but more often than not, (as Chris warned me on the phone this morning), “Remember, just because she promised to try doesn’t mean she will be able to do it.” And sure enough both of us were lost in our frustrations like any other day. It scares me to think that I may be staring at the dreaded "plateau of recovery" once again and wonder what the future will look like from here.

I can accept the challenges that are tiring and often inconvenient and venture into the world with Juliana coming right along side me. And in fact, many times if I want to enjoy time out, that is exactly what I have to do. But her injury-impacted behavior makes her less social and ‘portable’ than I can handle graciously. We go somewhere with Juli knowing that we cannot stay long because she will eventually ‘melt down’ and need to leave. The fact that the world is completely inaccessible to people with a disability is a topic for another time but it certainly doesn’t make the journey any easier. 

I was in a dressing room yesterday with Juliana and the attendant came in (not to my specific room thank goodness but into the main room) and announced that “patrons are not allowed to bring their carts into the dressing room."  We were the only ones in there, I had no cart, just a daughter in a wheelchair and knew someone must have caught a glimpse of me pushing something on wheels and came in to reprimand me with her limited information. That was all it took to degrade Juliana’s behavior from tolerant to tantrum. I was thankful for the curtain between us to shield her behavior because the woman would have been mortified.  But the disability was all mine in this situation because I have not yet reached a maturity level with this situation to allow me to accept what I cannot change and in spite of myself, I felt hurt and embarrassed. 

And as Juliana lives each day with the effects blanking out her once luminescently expressive face, I can see the darkness descending on all of us. It is starting to become apparent to me that a TBI is not really an injury at all but a disease. It is a disease that slowly, stealthily eats away at the injured person and their entire family, slowly breaking down your resistance, your defenses and your resolve. Although I focus this blog on Juliana and what has happened to her but I am nearly on my knees watching how this has also happened to each one of my equally loved other children. I can speak frankly about them because they don’t read this anymore. Perhaps even this frequent recounting has too much. 

Adam is 15 months younger than Juliana and was her friend from the beginning of his life. When he moved into his own apartment at 18 years old, he rented one in the same building as Juliana and Chris, exactly one floor below. When they moved out of that building and rented a house instead, Adam rented a room in that house.  Immediately following the accident he rattled around in ‘Juli’s house’ for a couple of months before he couldn’t handle seeing her makeup lining the bathroom sink anymore and moved out. Since then, I feel like I lost him as well as Juliana as he has a hard time relating to the girl she is today. 

Dylan also looked up to his big sister. When she had her accident he was away at school and it didn’t take him long to realize that he needed to be home (to make sure his mother did not fall apart I am guessing). He lives here with us today but his repeated attempts to ‘pep talk ‘her back to her old self are wearing him out as well. I find both my boys watching me warily and getting more and more concerned as I crack a little more each day under the pressure. 

Throughout her life, Cheyenne took the lead from her sister, and often the wrath when her choices were taking her in the wrong direction. But now she balances herself between extreme sadness over missing her sister to anger that she still sits in a chair interested in nothing but distracting herself with food. 

Then there is Delaney, the most loving person you will ever meet. She watches my breakdowns, (in spite of my best attempt to hide them) and wants to learn how to care for Juli to help me out. She listens to the angry outbursts from Juli with silent acceptance and tries to believe that the sister, who was so angry on her behalf for the teacher giving her too much homework, is the same one that rarely even looks at her today. 

Mackenzie, my littlest one, the one that Juliana asked to ‘keep’ for her own many years ago—she has learned to pack the travel bag with Juli’s supplies when we go out, push the wheelchair even on inclines, and lock the wheelchair into the van so it will remain steady. She knows when to tell Juli to stop drinking so she doesn’t choke and can interpret her muffled conversation and avoid her when she is mad.  Just like Delaney, she has become a very capable caretaker when asked to participate but she is forced to wait for my time and attention anytime I am with Juli because Juliana is unable to wait ‘her’ turn. 

I do know all the clichés about things happening for a reason and how much we will have learned and grown from this experience. In fact, I am sure I have likely written them in this very blog at one time or another. But as a mom I hurt for each one of my kids as they adjust through this time in our life. I have often been asked what I would do differently in this recovery, now that I know more than I did two years ago. My answer was always something about the treatment I would try or the therapy I would push but the more time that we stay in this same position, the more I know that I need to learn to cope with the day to day with this brand new person. They discharged Juliana to a woman operating on false steam and I have pretty much faked my way to this point. But the way I would answer that question now, (and if any of you reading this are new to the brain injury world I urge you to take this advice):  Join a support group as soon as you can and be prepared to attend because if you believe nothing else the professionals tell you, when they say "This is a marathon," they speak the truth.