"WHAT'S WRONG WITH HIM?"

I have often wondered if people can tell something is "different" about Maxwell. Can they see he is not a "typical" child...do they notice his facial differences? On a quick glance, do they notice his delays and quirks? Or are they simply attracted to his inner spirit?

My love is so strong for Max that I view him like any other child. I think he is absolutely gorgeous and incredible. Deep down, I know there are "differences" but I have wondered, are they different enough for others to notice?

I usually try and make all his wires and machines pretty inconspicuous. However, when they are noticed, people often ask "what's wrong with him?" And a few times, I initially forget about his wires and are somewhat offended and respond with "nothing is wrong with him." Then I remember the oxygen backpack and I'll just explain "he just has some lung issues" and I let it go at that. My answer all depends on how they ask. If they are asking with kindness, I will then use the opportunity to increase awareness about CHARGE, special needs, etc.

Once I was in the grocery store with my sister and I told her to observe all the people who stare at us (when his machines are noticeable) and try to act like they are not staring...especially when his alarms are sounding. First she thought I was a bit paranoid, but then she saw it happen too. But then of course she started teasing me that perhaps they were staring because I was constantly kissing Maxwell! :)

So I know that when his machines are around, it is obvious this kiddo has something going on. If it were me (pre-Max), I would probably sneak a glance too and perhaps ask questions if the parents seemed open about it. It would be out of wanting to learn more about the child, not just to be nosy...and I think that is totally acceptable for people to do.

But without the machines, is it still obvious he is not a "typical" baby? Do they still wonder?

Well the answer, from at least one person, came today...and that "defining moment" (not sure what else to call it) finally happened.

Max and I made a quick run to the grocery store earlier today, and all was well. He has been off of oxygen all day (the meds are doing their job!) and I even had him off of his monitor for a few hours...so he was tube free.

As we stood in the checkout line, I was kissing his feet and telling him how beautiful and amazing he was. When I was paying, the cashier commented on how cute Maxwell was and how much she always enjoyed seeing him when we shopped there. Then she asked, "So what does he have...Down's Syndrome?" Her question, while simply out of kindness and simple curiousity, totally caught me off guard. I have never once been asked (when his tubes and machines are hidden) about his condition. It was so strange. I wasn't angry with the woman...not at all. She was very nice, but little did she know what an impact her question had on me. She was able to see his "differences" and actually felt comfortable enough to ask about them.

It was quite a moment. Definitely not a good moment...but not an absolutely horrible moment. (Ok, I did cry a little in the car...and I was a little numb all afternoon.) Just a defining moment in a special needs mom's life when their child is noticed for being "different." I have a feeling this will be the first of many, many, many...