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Full Disclosure

Full Disclosure

I could not believe how well he was doing. Max, then age 4, had been home from the hospital for about a day when he asked to go outside and play.

He still had stitches in three places from the operation to place his shunt, but after four days in the hospital and one at home of being on the miserable side he was finally feeling a lot better. I gave him some sidewalk chalk and sat on the front steps while he and Claire started to fill up the driveway with drawings.

The neighbor kids, who I’m guessing were about 6 and 11 at the time, came over to join in and stopped at the steps to tell me about their day. “We got shots today,” they said. “Eww. It was awful. You should see my arm it’s swollen.”

I don’t think Max was really paying attention at that point, but it was the first of what turned out to be many times when I was truly torn about how much medical information to disclose not to mention when or how.

Some part of me really wanted to tell, OK maybe shout at, the girls something along the lines of do you know what that little boy has gone through in the last few months. Try constant headaches, double vision, countless i.v.s, half a dozen lumbar punctures including one unsedated and then come over here and tell me about how the shots hurt.

But my better angels prevailed. I did suggest they take a closer look at Max and all his stitchery. First they ewwed (which I do believe, in proper 4-year-old-boy form, he appreciated) but sweet girls that they were they then clucked all over him.

It certainly wasn’t their fault that their mama hadn’t kept them informed of Max’s ordeal. I am sure the shots were a big deal to them that day. That’s perfectly appropriate as well. I am a big weenie myself when it comes to shots.

With some chronic illnesses, the problems are obvious. That of course poses its own set of issues. Take Claire’s alopecia, for instance.

We happened to be visiting the Memphis Zoo after one of Max’s follow up appointments with his neurosurgeon while Claire was bald from the alopecia. (Skip to the second half of Our Journey for background on alopecia and the conditions that prompted Max’s shunt placement.)

Max’s neurosurgeon practiced at both LeBonheur and St. Jude’s. We understood by this point that St. Jude’s location in Memphis means strangers are even quicker than usual to jump to conclusions when they see a bald child, although really I don’t think you are supposed to take immune-compromised kids to public places like zoos.

She was little enough she didn’t notice the stares. When we stopped to let Max and Claire play on the zoo playground, her bald head was an attraction for a couple of kids, but Max just explained it for her when they pointed and asked. It was fine.

For our part, Jason and I, who are inclined to live in our own little dreamworlds to start with, had grown kind of oblivious to the adults staring, but twice that day total strangers came up to us and handed us cash. That was a new response. The first time I refused it. They took it back, but they seemed hurt and didn’t stay to hear my explanation about how she was bald but not sick. The second time I just took the money and donated it later. It was just too much to try to explain, and I had the feeling little ears, that until then hadn’t been that tuned into her own hair issues, were clearly perked up when I did stop to explain.

Really both situations, the obvious health issue or the hidden health issue, have their awkward moments. Food allergies I think fall somewhere in between.

Being forced to disclose them when you are faced with a snack time or birthday cake makes it a little easier to launch into the medical history. Similarly, explaining that I need to drop off the epipens and inhaler with Max is a good opening for going over some of his medical saga. It leaves everyone aware, but then we can get back to focusing on the fun of the upcoming event.

Facebook and this blog also are presenting some interesting challenges and opportunities. There are lots of people in our circle who have gone through the whole medical saga with us and know and understand his complicated history. If we’re at the emergency room getting his shunt checked out or following up on an allergic reaction, they get it. Since that is a part of our life, I’m inclined to share it just like I do the Pinewood Derby race loss (OK losses) or the photos of the camping trip. But then there are others who are just tuning in, who I think — judging from what a few new and helpfully candid friends have told me — sometimes wonder but are afraid to ask outright about the medical posts, which granted are not as universal an experience as the first day of school or the spring break posts.

I am mostly (or at least have been so far) of the school of thought that more information is better. Claire though especially is already wanting to shy away from telling anyone anything is amiss. I am never sure what to do about this. I want to respect her feelings, but it is obvious when the wind catches her on the playground for instance or when she is swimming that she has a lot of missing hair. I think kids are going to make less of an issue about it if at least her close friends and classmates are in on the deal, but then again it’s possible they won’t even notice.

It’s also possible I may be letting my good experience with Max color my judgment. He’s been to enough school holiday parties and eaten enough different things that most of his friends and classmates are aware. It’s remarkable to me how almost universally kind they are about it. Then again food allergies and asthma are both a lot more common than chronic alopecia.

Adding to the complexity here is my general gut instinct that more awareness of all these conditions is a good thing. I don’t think it should be the “no. 1” thing on either kids’ list, but it is a part of who they are. In the case of Max’s shunt, it’s a quite literal part. I don’t want them to feel shame. I also think awareness can lead to more understanding and also possibly more research money for cures. At the same time, I am a little uncomfortable with spending a lot of my valuable time and energy posting ribbons and awareness week information as it just seems somehow superficial. But a meaningful conversation about how these conditions affect day-to-day living I think is worth the effort.

What’s more, from a selfish point of view, I find I can connect and relate to other families that are dealing with medical issues, both larger and smaller than the ones we face. We are managing a pretty unique set of chronic conditions over here. While I try not to make that the focus of our day-to-day lives, it adds stress. It’s encouraging then to be able to both give and get some empathy. Plus, I find hearing other families’ stories can offer some perspective on ours. There are plenty of friends and acquaintances who have only disclosed their struggles after I disclosed some of ours. I’m almost always grateful to have had those exchanges.

The bottom line is I’m still not sure where the line is. I have a feeling as the kids reach their teen years I’m going to have to be a lot more selective about what I say and post, and I’m going to have to let them find their own comfort level with their diagnoses as well. I hope I can handle it with more grace than I felt that time after his surgery with the neighbor kids on the driveway in front of my house.


8 responses »

  1. I appreciate your candidness and have learned much through your posts and researching to learn more after. Thank you for your transparency. As I know you and Jason are both individuals of strong faith, I truly believe God will show what will and won’t work for your children and trust that He will continue to bless your family. Your posts about your kids never fail to impress me with their genuine love for one another, excitement about all the different activities they are blessed to be part of, and their endurance when dealing with their medical challenges.

  2. I have no words to describe my feelings while reading this. And i am a verbose person. All i can say is that max and claire have verrrry special parents amd i am so proud to know them. I am only sad that their grandpa david ismt here to experience all of this.

  3. I have also experienced the stares from uninformed strangers…my son’s eczema gathered a lot of attention waiting in the check out! I ranged from people openly gasping and expressing disgust on their faces to people reminding me that children with chicken pox should be at home recovering. I know none of it was meant to be malicious…but never the less…it still hurts! As my boys have grown older, they have become accustomed to my open explainations of skin issues and food allergies. I try to explain it is a part of them that is important that people understand…in a way it garners acceptance by demystifying it. Children are so great at displaying empathy when given the facts…they are inquisitive by nature. Your disclosing your medical issues and prompting other families to disclose theirs is proof that everyone lives their own ‘normal’. Living in fear of what others think is no way to live…accepting who we are and living the best that we can with all that we are given is a much healthier way to live. I want my boys to live proud of who they are and what they have survived rather than in shame. Educating others is the key! Keep up the great work…your stories reflect a loving and caring family on this journey called life.

    • I’m sorry, Susan! I think that must be harder. When people see a bald little girl, they seem to feel nothing but compassion. I don’t know why when they don’t feel the same way about eczema. It’s weird how some disorders bring out the best in people and others the worst. You rock at educating though! You’re an awesome mentor for me. Thank you for all the kind words.

      • We are all in this together…we must support each other! Knowing there are others out their living the best they can with their journeys spurs me on and gives me the strength to carry on with my own. I thank you!

  4. Pingback: Living with Food Allergies Blog Carnival: June 2012 - Stacy Molter

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