112) Dear Family and Friends: This is how I do it.

I've written a few posts by now on the challenges of special needs parenting.  Most of the time, I think, I write while keeping in mind that my readers (you) are "insiders" in the world of brain tumors, hypothalamic obesity, PWS, hypopituitarism, etc. In my last post, I wrote a letter addressed to doctor parents and today, I write a letter addressed to family and friends who are not "insiders."

Dear Family and Friends,
"I don't know how you do it" is a common expression I often hear from you regarding your incredulous admiration for what I do to keep my child optimally healthy and happy. Of course, you can't possibly know "how I do it" or what I even "do" because you haven't had to live through our particular life circumstances. However,  I'm pretty certain that if you had to do it, you would; it's not heroism, it's just parenting under duress.  Chronic duress.

Although on the face of it,  "I don't know how you do it"  is a sentiment that expresses your marvel of the feat of our parenting responsibilities, I find that it is also a way of putting emotional distance between your experience and mine; my problems require certain extraordinary parenting measures and yours do not. This comment about the unthinkability of our ordeal is probably because you'd rather keep the problem off your mind  and thank GOD (you think), you can.  I don't blame you at all. Before my child's diagnosis, I would have felt the same way. However, despite what I do, I don't feel like a superhero when I'm parenting...I don't want to be admired and I don't want to be pitied but it would be really helpful if you could please read this to try to understand "what I do and how I do it."

As you can probably guess, being a special needs parent is stressful and tiring- the tasks involved in keeping my child alive and out of the hospital, for example, require a great deal of time and energy.  In our case, much of our time is spent trying to keep my child's body in homeostasis (thanks to a damaged hypothalamus).  Having adipsic diabetes insipidus is probably the most stressful thing we've had to manage, besides the HO and hyperphagia. Weighing him frequently throughout the day, checking his blood for electrolyte balance, and nagging him to drink water while being mindful of his urine output is a task that requires constant vigilance, lest his electrolytes go out of whack (which they can and do many times a day).  We have had this experience just last week as he had to go to the emergency room by ambulance and stay overnight at the PICU for rehydration and electrolyte rebalancing.

To illustrate the challenges of managing adipsic DI, the best metaphor I have for this experience is this:

Imagine your child's entire life is lived on a circus tightrope very high in the air without a net. Imagine your child has a condition that makes it difficult for him to stay awake and alert on his own (yes, even with his own alarm clocks).  Imagine you are on the ground in the circus ring, constantly shouting up at your child to wake him from his slumber so he can keep his balance and not fall to his death. Your voice is hoarse and you are tired of shouting at him to stay awake but his tightrope is long and he has to walk it in his sleepy condition for the rest of his life. You wish you could go up there with him to keep him awake and safe but there is no room on the tightrope for you and you can't leave your post on the ground because you need to be there to catch him if he falls. Imagine the tightrope is in an outdoor arena and all of the above needs to be accomplished irrespective of the (foul) weather conditions that are bound to occur.

The high maintenance responsibilities seem never ending, and for us, adipsic DI management is but one of the many things we have to do.   The list goes on and on but I won't belabor this point anymore. Trying to keep my kid awake on that tightrope is enough to explain "what I do."

Besides the obvious exhaustion and stress of doing this crazy tightrope act, being a special needs parent is also lonely.  As the years pass, I notice his typical peers growing up and becoming more independent, able to do so because they are not living a life up on this tightrope with their chronic medical conditions.  While I don't want to censor you from talking with me about your typically developing child, I must admit that it isn't always easy to hear from you.  When you are complaining about your child's (normal) problems with his friends, I am envious because I wish I could say my kid had friends. When you express your worries about your child's sports injury and how it will affect his season, I am filled with longing because your child was able to play the sports to injure himself in the first place. Even reading the high school newsletter and seeing the announcements about job fairs, travel opportunities, and college applications pains me because I cannot help but think about what my child may never do because of his health conditions and disabilities. Don't get me wrong- I still have hopes and dreams for my child; it's just that the hopes and dreams for a full life are much, much harder to realize up there on that tightrope, you see. Even witnessing ordinary life for a typical teen can be anguishing. The other day, I attended a variety show that was put on by my kid's high school choir program.  It was a bittersweet experience to watch the high school kids bonding over their music and friendship.  While my kid was physically present and participating in the show, I could see that he was an outsider to this normal teenage experience. The joys of friendship and fun that I witnessed at the performance ended up making me feel that much more sadness for seeing what he was missing out on in life.

Again, I don't want you to censor yourself around me because I still want to have open and honest communications in our friendship.  I guess I have to admit that I also need to uphold my end of the bargain because I've had to limit my communications with you somewhat in order to protect myself from the sad feelings that arise when I hear about or see your kid's normal life. While I am glad for you to hear (good) news about your child, sometimes it makes me sad for my child. For obvious reasons, I can't easily tell you that I feel sad when I see that your kid is healthy, happy and successful. As you can see, this dilemma can leave me feeling stuck and lonely.

To my inner circle of family and friends, you are there by my side and I greatly appreciate it. Thank you for being there for me, for listening, for spending time with our family and with my kid, and for giving me a break when I need it. Despite the problems we have, I do my best to rally and to most, I probably appear to be normal, perhaps even "high functioning." My apparent normalcy does come at a cost, however, as it is a struggle to keep up the energy to maintain it and I often feel like I am failing those of you if I haven't reciprocated a dinner invitation that I owe you, for example. Sometimes I don't call as often as I would like to because I am feeling down or anxious and I don't want to be a bummer or burden you with my never ending problems.

To those of you in the more outer circles of my community, please excuse my absenteeism. I so wish I had the energy and time and enthusiasm to join you for all the fun social outings I used to do with you. My retreat was necessitated because of my kid's high maintenance issues; after almost 7 years, they aren't letting up and I don't know if they ever will. If I seem unavailable or less friendly than I used to be, there's no need to take it personally. I don't mean to be so socially withdrawn and I hope what I've written here can help explain myself to you. I suppose this is why I have largely turned to a community of other special needs parents and others who are going through the same health challenges because I don't have to explain myself with them and it is just easier than pretending to live a normal life or explaining and having to hear "I don't know how you do it," over and over again.

If you are still engaged after reading this, you may be wondering if there is anything you can do to be supportive or helpful. It is my hope that reading this will help you better understand my feelings and experiences as a special needs parent.  I don't expect you to understand as an insider understands but I hope that what I've written here will allow you to come a little closer to me and keep me company at ringside while I coach my kid across that tightrope of his life.