Friday, September 1, 2017

Grief & Denial

I admitted many patients when I worked as a registered nurse at Seattle Children's Hospital. I always worked 11 PM to 7 AM, so it was a given that anyone I admitted was going to be exhausted and short of temper, and likely also frightened and overwhelmed.

I had been told that doctors had recently diagnosed one particular incoming teen girl with multiple sclerosis and she was being admitted for further work-up. When I went through the intake questionnaire with the patient's mother, I expected fatigue, irritation and nervousness. What I got was complete and utter denial of her daughter's condition. The mom was looking forward to our doctors "fixing her girl up" and going back home to the life they had left behind.

On the surface it seemed crazy that this person couldn't see what was right in front of her. Practically overnight her daughter had gone from being active in school sports to having severe vision issues and being wheelchair-bound. I didn't argue with the mom, though. I remembered all too clearly my level of denial at various point in Hannah's history. I'm sure someone could have looked at me with the same level of disbelief, for instance, when I didn't really acknowledge Hannah's heart defects (all seven of them!) when the pediatric cardiologist explained them to me.

It has been my experience that some form and level of denial is a constant, fluid part of being a special needs parent. It protects us from being overwhelmed as we try to adjust to massive changes in our lives, expectations, and future plans. In the beginning I denied/shut out the significance of Hannah's heart failure. These days I deny/shut out the significance of being her caregiver for the rest of her life or mine; whichever ends first. This mom of the teen with multiple sclerosis would come to terms with their new reality eventually, as she could handle it; there was no point in me trying to jam it down her throat at two in the morning.

As I mentioned in With Angel's Wings, a sister emotion to denial is grief. Part of accepting the reality of Hannah's diagnosis was mourning the loss of the [healthy, "normal"] child I thought I had. I've learned over the years that there really is no end to that grief, either. Just as I would expect with the actual loss of a loved one, over the years I have had good days and bad days, but I still grieve the loss of what I thought our reality would be when I gave birth to my child. There are many more good days now than there were back in the beginning, but grief has remained a part of me since the day of diagnosis.

I recently learned that I can relate to a population I never would have thought I had anything in common with. Every summer we try to get together with friends from college, Allen and Tabatha. They have two children, Nathan and Abigail, who are roughly the same age as James and Maddie. Two years ago (when Abigail was about 10), Tabatha confided that Abby had expressed some feelings of confusion and/or discomfort with her identity. Abby had told Tabatha she didn't feel like her female peers; that she didn't have anything in common with them. I suggested finding a counselor for her, but I honestly didn't think too much of it beyond that.

Last summer there was a scheduling conflict, so we weren't able to meet up with Allen and Tabatha; therefore, this summer we were especially anxious to see them. Within moments of our hugs of greeting and exclamations that it had been too long, Tabatha informed us that Abby identifies as male and prefers to be addressed as Alex. Man, you miss just one summer visit...!

Speaking in gross generalizations and stereotypes, there are kids you look at when they're as young as toddlers and think, "Oh yeah...that kid is gay." Then there's others who, when you find out they're gay [many years later, typically as older teens or adults] you think, "Huh. Didn't see that coming." While I haven't had as much exposure to trans individuals, I'm assuming the same is true with them - there are those who are "obvious", and those who aren't. This was a "didn't see that coming" moment for me. Abby had always been a relatively quiet girl, not overly feminine, I suppose, but certainly not at all masculine - she had long, beautiful hair, often wore sun dresses when we saw her...not anyone I ever would have guessed identified as a male. That being said, I had no problem accepting it. The only challenge was remembering to address this person as "Alex", "he" and "him" when years of practice prompted me to say "Abby", "she" and "her".

I was particularly proud of James and Maddie. They just responded to Tabatha's announcement with, "Huh. Okay. Wanna go swimming, Alex?" Later Maddie did ask me why Abby was now Alex. I told her that some people are born one gender on the outside but feel like a different gender on the inside, so they want to be treated as the gender on the inside. She said, "Oh. Can I be a boy, too, then?" I said, "Do you want to be?" She thought for a second and said, "Actually, nah. I'm happy with who I am." Then she ran off to play again.

All of that acceptance is easy enough for friends. It's a very different experience for a family. Until now I categorized families of LGBT individuals in two groups - accepting and not accepting. Allen and Tabitha can easily be placed in the accepting category; they are very supportive of Alex. That doesn't make it easy, though. I now know that accepting the "theory" of LGBT is just the first step of the process.

There are the little details to consider - those that you don't think about unless you're faced with them. For instance, it's one thing for the school to be accepting and accommodating of your trans child, but at what point do you officially re-register your child from "Abby" to "Alex"? That step, in and of itself, signals another "layer" of acceptance. It says, "This isn't me just tolerating this "phase" you're going through and calling you by a different name; this is me understanding that "Alex" is who you are." Furthermore, how do you even go about making the official name change? Do you just change the school records? What about medical records, etc.?

Then there are bigger issues to grapple with, like the decision to agree to hormone treatments. If you do, there's the overwhelming sense of "no going back"...but at the same time, doctors suggest beginning them before puberty, because it's much easier for a trans person to prevent an adam's apple or breasts than to try to get rid of them later. I don't envy Allan and Tabitha in decisions like that at all!

Another big issue, though, is allowing yourself to mourn the loss of the child you thought you had while simultaneously accepting the "new child" you are being presented with. Tabitha is in deep mourning over the loss of her daughter, but appears to feel somewhat uncomfortable expressing it, for fear people will misconstrue it as lack of acceptance of Alex. This is something I can completely relate to. I still fear the judgement I anticipate, should I openly talk about mourning the loss of the [healthy, "normal"] child I once thought I had - and Hannah is 22 years old now! The sense of loss never went away, but neither has my fear of speaking about it.

I know our friends will get through this time of transition (no pun intended) with grace; they are an incredible family. The whole situation just demonstrates to me that I have more in common with the LGBT community than I ever would have guessed. and learn!