Sunday, August 06, 2006

"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...

10 comments:

RebeccaA said...
This comment has been removed by a blog administrator.
Dylan (and Kristy) said...

Hey Amy,

I had a defining moment like that too but I have to admit, you handled it much better. I had an older woman in the grocery store ask me "what was wrong" with my child. I know that Dylan's Downs features are obvious does that make it "wrong?"

I agree with Rebecca in all aspects of her comments including that all kiddos are precious and a gift from God. My approach, educate one person at a time....and count to 10 before I speak. Who knew that technique really works.

Love,

Kristy and Dylan

elle said...

it is not unusal to think people like me and max have downs coz the features r quite similar even when ur like me with out the facial parylisis and downs people dont gert that i know coz m cousin has i weve had a person say oh can u help us youve got downs lucky fo rmum my cousin has ti so she puts them through to my aunty but if we didnt have cam around donno what mum would do she sitll said ellen has charge and she explained bout how my cousin has downs and how they look similar and this person dditn understand coz she cant speak good english bu its quite common though i dont think people think marn has charge LOL although a couple at my party could of LOL

ang said...

Sweetheart,
At your party when I looked around the backyard, I saw children. I did not see children with special needs. I saw children, laughing and playing and playing tricks on adults. I saw them doing typical everyday things. (Yes it was nice to talk to other mom's with medical terms, and they understand what you are saying, and not thinking did you just fall off that turnip truck last night? But we didn't.) It is this you must teach your child and other's that they must look to the inside of the child and never judge by it's outer skin. I loved meeting the many children and mother's at your party for Maxwell. Some I've had the pleasure of reading their blogs, and seeing the updates of their children. For those that ask in harsh tones and negative connotations think of this as ignorance. Think of this as bad manners. Be graceful, classy, and dignified that you are and give your response. There is nothing wrong with your child. Remember what I said to you. Maxwell was ready to take this challenge on because everyday life as we know it was too easy for him. His challenge is to educate and spread love. He has done that in his first year of life. Look at all the love he has spread. Look at all the love he has been given. Look at what you've started here. Educated people with Max on a Blog. So many people are touched by this and not just family. Put a Map Stat. on. You'd be suprised to see how many people all over the world read about Max..
Love to you
Ang

Cedie L Mock said...

Cedie's machines can't be hidden. I haven't taken to many public places such as stores or resturaunts but when I take her to the hospital or doctors offices, I can feel (and see the more blantant people) stares. I try to look at it this way: All the machines/wires/tubes etc. just reinforce what a fighter my little girl is.
Although Max and Cedie need a little technical help, they are very happy children despite their lot in life thus far and that makes them better than normal.

RebeccaA said...

What's wrong with Max? It's the same thing that's wrong with Cameron - nothing. They simply don't fit the world's definition of the word "typical". No, our kids aren't typical, they are precious. They are precious in the eyes of God and of course to all who love and know them.

Love,
Rebecca
Cameron and Nathan's mom

8:52 PM

Diane said...

People are just ignorant and just say the wrong things most of the time. There is nothing wrong with Max. He is the cutest baby I have EVER seen. I love his grins. I had a daughter crippled from birth. She had to wear braces from her hips down. The stares really bothered me. I just decided to stop looking at them and move on. Be proud of Max. He has sure brightened my life. What is wrong with Max is that he has to fight for his life harder than the rest of us. Does he complain? I don't think so because all I see is a bright, beautiful, happy little boy. Amy, be proud that God chose YOU to have Max. Not a lot of mother's would have kept their child that needs 24/7 care. You are a perfect mom, and Max is a perfect child. That is why God chose you to care for him. Thank God every day for that wonderful privilege.

Love,
Diane from WV

kanda said...

Amy,

Brace yourself. When Maxwell is old enough to understand people's comments and questions, and when they come from other children who back away or tease, then your heart will truly break.

By then there are so many involved: Max's feelings which you must salve, your feelings, the child who needs to be educated by somebody, and the child's parent who may be even more ignorant, or defensive if you so much as look at their child, who made the comment. God forbid you kindly explain to their child what "special needs" is.

I wish you strength and a light heart, and remember that Maxwell's feelings take priority here.

Ruthie said...

I think that you are right about handling it case by case. Some people are legitimately concerned and want to show care. These are the ones you take time with. Then unfortunately there are the idiots who have no edicate or concern. Those are the ones you say- "nothing, my Mighty Max is wonderful" smile real big and walk away. Until they learn what manners are, they do not deserve to be greeted with an explanation. Like mama always said- "if you don't have nothing nice to say, don't say anything at all."
Take care-
And keep being the wonderful mom that you are!! :)

Heather said...

It looks like the cashier has also noticed you in several times, and people have formed a "relationship" with Max whether they know him or not; simply by observing his quiet triumphs and showing us that some of us have inner limits, and some of us have limits that are there for the public to see.
Just having him part of their daily life, either by reading this blog, hearing about him from someone who knows him, or by his presence in the community (I remember people all the time that frequented my work, and most were just run-of-the-mill folks, not especially different, just part of my daily life).
So some people may ask because they don't have social manners, and some may ask because they have quietly seen him for months, in and out of their daily life, and would like to know a little bit more about this guy. His spirit really does radiate, and I think people are drawn in to him because of that and THEN see that there may be something "different" about him, but I don't believe it's the first thing people see when they meet Max. Not by a long shot!