“4:1 I therefore, the prisoner of the Lord, beseech you that ye walk worthy of the vocation wherewith ye are called,
With all lowliness and meekness, with longsuffering, forbearing one another in love;
Endeavouring to keep the unity of the Spirit in the bond of peace.”
- Ephesians 4:1-3
At end of many days, when our family's attention turns toward our preparation to rest, I often find myself wrestling with a busy mind. There are so many encounters I have learned to expect when we are out with Ava -- encounters which spark questions about her health and her general condition -- which are unavoidably imprinted upon my brain. These conversations are stirred like a soup over a fire that is stoked throughout my day with questions and assumptions of my own: What did this person mean by that question about her ability to do such-and-such , or Does he seriously think that her difference is something to apologize over?
Some nights I find it difficult to put these conversations to bed. As a result, I dismantle every word, every reticence to make eye contact, every insensitive pry, and my wounded heart begins to accuse the person who might have had more questions than sense.
I build walls around my "right" to be upset with them.
Within those walls, I build towers to look down upon those who have offended me.
In my mind, I pour my own so-called wisdom-earned-through-experience upon their ignorant heads, and then I sit up there all alone in my tower and feel really smug about shutting them down.
But wait... Isn't the whole purpose of wisdom to open UP someone's mind to the truth, rather than to dole out a verbal spanking and send them on their merry way?
I am learning very quickly from those who seem best adjusted to unforeseen circumstances regarding their children:
Look beyond the questioner's inappropriate words, and into their intentions.
Perhaps they're asking "how bad is it" because they'd want to know how gently to treat my child.
Maybe they want to know how many health problems she's had because that's something they can easily sympathize with, and they are truly concerned for her health.
What if a well-thought out query such as, "How does that affect her life?" comes out sideways in a question like, "So what all is wrong with her?"
Or what if I'm just tired that day, I'm hungry, or I'm having a pleasant stroll, and don't feel like standing around and delivering detailed dissertation on the numerous expressions of an extra 21st chromosome to a perfect stranger?
All of these moments have happened, and will continue to happen. I'm at peace with that. There are no hard-and-fast rules that guide common discourse anymore, and so anytime we leave the security of home, I can count upon Ava's quirky sweetness to draw attention and spark strange conversations wherever we go.
I can't fight a one-mommy battle to bring the world to a perfect understanding of what is appropriate to ask a parent of a child with Down Syndrome. I can be my child's advocate and, for now, her voice, but one day, she will be able to speak and react for herself.
And when she does, I want her to have learned through her parents the importance of forbearance. I want to guard her against the dangers of being controlled by hot-responsive emotions.
I want her to speak clearly, and with honesty, in full knowledge that someone's false assumption of her being has no bearing upon her dignity.
I believe with all my heart that she is called to be a peacemaker.
And as her parents, so are we.
Heather, though i do not know u personally, i work with a friend of yours (christy) who talks about Ava. I am in great admiration. I have a child who is mentally handicapped and get frustrated with constantly having to explain or worry about what change or society will do to her or how they see her. I then remember she is my beautiful daughter no matter what the challenges will be. I believe God gives us them to teach us something about love and more. Again a great admiration and u have a gorgeous little girl.
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