We have an unusual family, no doubt about it. A child in a wheelchair using a touchscreen computer to talk can't go anywhere without attracting attention. A mother of three, one in a wheelchair, who is obviously pregnant with a fourth is also rather unexpected, it would seem. This summer's arrival of a fourth baby will increase the unusual factor significantly, given his significant medical complications.
When I went out into the community with Elli, before any other children came along, I used to avoid casual conversations with strangers at all costs, especially in doctor's offices. I couldn't carry on a typical "how old is your child/what are they doing now/are you having any more" conversation. Nothing in our child-raising experience -- and I mean nothing -- fit the norm. So all I felt equipped to talk about was feeding tubes, medication schedules, therapies, surgeries and a range of tests, and heart problems. So I kept to myself whenever possible.
This has eased up some now that I've had two more children with no significant medical issues. I've now had that typical mother's experience a couple times, and have typical mom challenges in my conversation arsenal.
However, I have to confess to occasional episodes of posing. Sometimes I like to pretend that I've never been to Children's and that nothing in my experience as a mother is shocking or sad or merits any attention.
This happened most often when I was the mother of one. I once went to the same hair-stylist for over a year and never told her anything more than that my daughter had a lot of reflux. She knew about the medicine we tried for it and the eventual change in formula. I even got brave enough to bring my daughter once... but this was before we had her first wheelchair. She sat in a stroller the whole time and, being a baby (and small for her age), no-one asked any questions.
Now, I tend to avoid the sordid details when I'm out with one of our healthy children, or when I'm alone. If someone asks about my children, I tell them names, ages... stuff like that. I just leave out the wheelchair and frequent hospital stays and surgeries and communication challenges and tube feedings and developmental delays and medication schedule and seizures.
When we're all out in public, I am very choosy about how much I say about Elli. I just don't care to get into detailed conversations about medicine and therapies and her future with people who have no knowledge of those things. People with no background in any applicable field somehow still feel qualified to offer ideas, but their suggestions demonstrate ignorance of the severity and complexity of Elli's conditions and of the speed and extent of potential recovery. Frankly, after 7 1/2 years of hearing the same things over and over, I admit it. I'm annoyed and frustrated by the implication that answers are simple and I'm either stupid or uncaring to not have thought of them yet.
However, if I learn that someone works either in the school system or in medicine, I am more willing to share. And if someone asks me questions and shows genuine interest in Elli and her situation, I'm much more receptive to that. Just please please don't offer suggestions.
People are always attracted to and impressed by Elli's Dynavox, and those conversations stay really positive -- what she can do, that she understands everything around her, and what an amazing piece of technology she has. I love to talk to people about this. I try to make the most of every chance I get to educate people that a person's physical challenges do not necessarily translate into mental or cognitive challenges.
Anyway, I realized yesterday that I've started pretending again. I haven't told anyone on the Family Advisory Council (a group of 40 people who are either employees of Children's or parents of children who are patients there) about our baby's diagnosis. My immediate coworkers know, but not this council that I lead, which is filled with people who would really truly understand.
I've started thinking about why I've done this over and over. In certain settings, I think that the gory details of our life would be a cold bucket of water and people would struggle to recover from hearing something like that. Where do you go in a conversation after someone drops a bomb like "My child had a devastating brain injury at 4 days old, has had 4 open-heart surgeries, and is in a wheelchair with no ability to speak?" And now we get to add "and my fourth child has similarly serious heart problems which will need multiple surgeries to correct and will significantly limit his activities for the rest of his life."
I know. It's horrible. It's shocking. It's hard to understand why things like that happen to people. So I just leave that part out sometimes because I don't want people to be uncomfortable or awkward around us. I suspect I'm misjudging people a lot, but I don't know for sure. I still haven't figured out the best way to handle this, particularly on my bad days when I can't paste on a happy, positive, heroic face because I feel anything but happy, positive, and heroic.
The other reason is that sometimes I just get tired of being the weird one. I don't want the attention, the sympathy, or the uninformed questions that I've heard and answered hundreds of times. It's exhausting to keep your game-face on every moment with kids who will be kids and a body that just gets more and tired as the years go by.
Some days I just want to walk in and walk out without anyone noticing. So every once in awhile I like to put on the hat of an average, ordinary, unremarkable stay-at-home mom with nothing to talk about but potty-training and breast-feeding.
Is doing this wrong? I think -- and I hope -- that there's a difference between pretending everything is normal for extended periods of time and leaving out details when someone is just making conversation and isn't really interested in the nitty-gritty details of your life. It's the same question I had in college about how to answer the question "How are you?" when the person who asked is clearly on their way somewhere and really meant "Hi" and not "Let's start a conversation and find out what's been going on with each other."
The extended pretending (ok, let's call a spade a spade -- it's lying) has proved to be more trouble than it's worth. For example, I never could find a graceful way to reveal to that hair stylist some of the real challenges I was facing at the time. I ended up finding someone new when that salon got too expensive for me. The woman I go to now also cuts Elli's hair and is one of the most patient and understanding people, especially with Elli's inability to stop moving (this is a direct result of her brain injury).
I really don't think this has an easy answer. I'm a human being who has bad days and doesn't necessary want to divulge those struggles to anyone who happens along. But I need to come up with some honest ways of answering questions that engages with the person's intent and desire to show care, even when their words come across wrong.
Meanwhile, I challenge you to think carefully about your words. When you just want to say hi to someone, just say hi. Don't ask a question you don't really want the answer to. But do ask questions when you're interested and want to express care and concern for someone. Don't offer advice if you have no experience with something. Assume that if you thought of it just now, in the 30 seconds you've had to think about the situation, they covered that territory years ago. Instead, try questions like "What have you tried for that?" or "What kind of research are they doing into that?"
You can also ask what their current needs are -- families in our situation are often in very difficult financial situations. Health care, equipment, therapy, supplies, and medications are costly and may not be covered by insurance. Even if you can't help someone financially, they may also need childcare -- taking a nap or getting out for one-on-one time with a spouse is a rare and much-needed break. They might need help around the house, especially if their family member is in the hospital or requires 24-hour care. Thing such as snow-shoveling, lawn-mowing, meals, cleaning, laundry, collecting the mail, and grocery-shopping can be huge helps also. Be creative and don't wait for a family to ask -- they are probably struggling with their own pride and reluctance to ask too much of people for fear of driving them away.
