It's My Diaper to Change

Controversy. Who among us has none of that? It appears you can avoid it if you take a neutral stance and avoid committing to an opinion or decision either way. But I heard a saying once that I have had to rely on many times in making a tough choice in one direction or another: "He who walks in the middle of the road gets hit from both sides." We will come back to that.

About 2 1/2 years ago my brother Joe was diagnosed with Acute Lymphoblastic Leukemia (ALL). The news devastated our family and rallying to support him was like a reflex. We were all in Vegas at that time celebrating two of the kid’s birthdays (told you we do that) and Joe had to decline the trip at the last minute due to a doctor’s appointment he had to take. We thought that missing out on Vegas for a doctor’s appointment was a little dramatic even for Joe who is, among other things, an actor in community theater.  

But the morning of our second day of the trip we received the call that had my brother Michael flying right back home to be onsite support for Joe. My sister Lori and I stayed in Vegas with our kids and their friends and even started working the support slogan which became: Odds on Joe. (You may have heard the song that Chris wrote and sang by the same title? That's right, he wrote it for this occasion.)

Right from the start they knew what they were dealing with. For the many months that followed, the doctors gave us the prognosis which was not expected to be good but the protocol was clearly mapped out. They had seen this before, knew the steps to treat it and were aware of all the obstacles he could encounter. Nothing was certain, of course, and in adults the survival rate was low, but at least they knew what they needed to do and what the family needed to do as well. They even went so far as to have milestones and markers to watch out for so at the "six month mark" we would have an indication of where he could be in the process and so forth. We believed at every step of the way that our brother would beat this cancer and, gratefully he did. Just about the time he was confirmed to be in remission and we thought our family had seen the worst, 23 months ago to the day yesterday, Juliana was in her car accident.

Our expectations were similar: rally the troops, create a support network, develop a theme, assume success, follow the protocol ... wait ... what? No protocol? You mean there is no path to follow to recovery from a Traumatic Brain Injury? Doc, what do you mean, "We don't know?" How can you tell us in our fragile frame of mind that we just have to "wait and see?" What? We have decisions?  Oh, OK, can you tell me the odds of the results of these decisions? NO?! OK ... Who decides what is best then? Do you? What? ME?  Oh dear God I am not ready to be that "in charge." I have to make these crucial decisions for my daughter who I am terrified for every minute?  Doc you don't understand, we have a bridal shower in two weeks ... we have a wedding to plan for. This is not happening. I looked around for the relief team or the person to say that I really didn't have to be in charge but there was no one to hand off this responsibility to. (OK so I wouldn't have if there was but ... go with me on this) My feet and my heart were like lead so I couldn't walk away from it, and Chris wouldn't go either, in spite of my best effort to try to allow him the freedom to do so.

And so it began.

From alternating shifts day and night through hospitals, therapies, appointments and all aspects of caring for person. Visitors came and went but we never felt we could leave this admittedly unknown recovery. It was scary every single day and many days it still is. I have many days where I am inconsolably sobbing, "Why do I have to be the one to decide which medicine or procedure or therapy or treatment to follow?"

The only thing louder (and perhaps more humorous) is the answer:  It’s your diaper to change.

That is the way I often describe motherhood to graphically depict that everyone can choose to stop helping but it’s ultimately your job to complete. I have not done it alone, and I don’t mean to imply I have. But I believe it ultimately to be my responsibility, even if I had a LOT of help. Similar thinking drove my parenting decisions for education, medical treatment, or just plain support. It was my job to make sure they had what they needed (and too often what they wanted) even if it meant declining to engage in a court battle to avoid the drama none of us wanted.  I made mistakes, God knows I did. And if God is keeping quiet out of respect I am sure someone is out there willing to share. I might not be the best one for the job but I am the one who has it and quitting is not an option, literally.

When I was granted legal and medical guardianship of Juliana it was the "authorization to parent" process that probably should be conducted at the time anyone has a child. It was pretty intimidating to be interviewed and evaluated by a court-appointed attorney for my care-giving techniques and plan for continued care. Doctors were given documents to present to the court. The many color-coded binders of information I have kept over the past two years were evaluated and the spreadsheets and workbooks of medicines and treatments we tried were reviewed. As the courts deemed Juliana incapable of making her own medical decisions, there had to be one court appointed person to do that. The lawyers, doctors and judge conferred and agreed: it is my diaper to change. And just like the early days in the hospital, as I looked behind me, there was no one offering, objecting, or even commenting otherwise.

Alrighty then, let’s do this (again).  

There isn’t a single scripted way to treat a Traumatic Brain Injury or TBI and there certainly is no cure. Time must pass and the brain heals slowly all on its own. During this time passing our job as caregivers can be put in the simplest terms, (although it only seems simple in retrospect): don't let the effects of the TBI deteriorate the body while the brain is busy healing. If it does, fix it. This means: prevent the seizures, treat the depression, prevent the muscle tone and contracture and above all else, keep the patient healthy. That is the bag of tricks I have been given to work with. The worse the injury, the longer it takes to heal and the greater the chance of the effects of the injury on the body.

Controversy continues. Sometimes we didn’t agree with a doctor, a therapist, each other, our conscience…you may have read as it all unfolded.  I am sure I ruffled a few feathers, clearly I still do, but I knew that Juliana was living in my home, in my life and I don’t just work her into my day, she defines my schedule.  It’s safe to say I am motivated in many ways to get Juliana back on her feet.

My dad used to say (wow Phil, I may write a book about you yet), "You have to break a few eggs to make an omelet." Juliana is becoming one lovely omelet (no mushrooms please ... she pretends to be allergic). The baclofen pump (egg) was the last option to reduce the tone and although it takes time to get it adjusted, it is moving in the right direction. The surgery on left foot (egg) was the last option to fix her contractured left foot so that she can walk.  As you can see from the photo that is finally starting to pay off as well. And now that the pain in her foot from the surgery is subsiding she can discontinue the pain medicines (egg) that had her a little disoriented. It is a personalized protocol written as you go, and unless you are the one balancing the whole thing, you can't imagine how many balls you must have in the air. Some fall. Some are wrong. Some turn out not to be balls at all but instead spiny sea urchins.  I wish I knew in advance but sometimes I just don’t.  I could choose to avoid the risk, not take the chance and just wait and see but I would rather hate myself someday for making the wrong choice than hate myself for the atrophy I associate with making no choice at all.  For better or worse that is the mom and the guardian Juliana was given.  

Juliana's progress has never been straightforward, as I have learned is often the case with a brain injury. It is more like a heartbeat being resurrected with peaks and rests that slowly become more rapid until you have a normal healthy beat. We aren't there yet but we are getting there. It's easy to see during the peaks but you just have to go on faith during the rests.

It is still my diaper to change.  I still can't afford to walk in the middle of the road and so in addition to attracting chaos I guess I will (choose to?) attract controversy. 

And popular or not, I don't really have a choice but to do what I think is the best option at the time with all the information I have to work with because my agenda is the same as everyone else’s:  To help Juliana get her life back.