Guide me…

March 1st, 2010

***Note to self: If you’re taking a car trip to a public function, don’t pick a book to read on the way that will make you cry every few sentences!***

(It was Road Map to Holland, a book I mentioned in an earlier post.)

And I will have to come up with a better plan for how to tell people about Verity’s Down syndrome face to face. I wasn’t going to say anything, but she was asking polite questions about our coming baby. I started feeling like I was trying to hide something, like I was ashamed of it, and should just make myself say it out loud, as readily as I would say that we were having a girl or that she was due on July first.

I could hardly move my lips to say the words, but it was my first time saying them.

Maybe it is kinder to avoid putting people on the spot? Is there any way to prevent the ensuing awkwardness? What would I prefer if I were in her shoes? Should I have left well enough alone? Or is this just how it is and I should accept it? Maybe I could come up with a script for what to say AFTER breaking the news? To sort of take the pressure off the other person to think of a response?

I guess this part will only last a few more months, and then Verity herself will announce the news?

On the up side, this was a Welsh public function, which meant that we sang! It was deeply satisfying to stand up and sing out the truth at the top of my lungs with everyone else!

“Guide me, O thou great Jehovah, pilgrim through this barren land; I am weak, but thou art mighty; hold me with thy pow’rful hand…When I tread the verge of Jordan, bid my anxious fears subside…Songs of praises, songs of praises I will ever give to thee…”

(Okay, to be perfectly honest, I choked up and couldn’t sing some of the time, but I kept singing on the inside.)

“Blessed are the people who know the festal shout, who walk, O LORD, in the light of Your face…”

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2 Responses to “Guide me…”

  1. Shari~hotfudgecustard says:

    Ahhh, I love that hymn!

    Praying that He will give you wisdom to know what to say and when and to whom.

  2. Tami Swaim says:

    I’ve done this self same thing. I read a book on an airplane which I was so into I finished it before the plane took off, technical difficulties. We were in the plane waiting for about 2 hours. Anyway, the book was about a boy who has autism. My eyes kept tearing up and my nose needed to be blown a few times! The included a lot of his own words because he learned to type though he was non communicative verbally. I had just received Joel’s diagnosis. Though I had already gathered that he might have autism. To hear the words “officially”…moderate to severe autims and the statement that he might always be at “mental age” less than half his “biological age” was a hard pill to swallow as this idiom goes. When I first heard that my mind concluded that now with him being an older 4 (which was his age at the time of the evaluation) and acting at a 2 year old level cognitively appears fine to most of the population but a 20 year old acting as a ten year old cognitively is a bit of a different story. As my thinking matured over the course of time I’ve come to not mind this scenario even if it were to become a reality for us. Joel is Joel perfectly created to be a wonderful fit for our family just as he is! For all the future holds it will be nothing less than His divine plan for Joel and for our family.

    I would encourage you with a piece of advice that we received and seems to make a lot of sense. When we refer to Joel we try to remember to say that he has autism as apposed to calling him autistic. Instead of saying autistic children it’s better to say children with autism. That way their identity as an individual comes first.

    I would consider saying that Verity has Downs Syndrome in place of calling her a Down’s baby for example. Our son Elliot has Tourette’s syndrome. This explains his tics to others when they are really noticeable and an explanation is helpful (such as to his Sunday School teacher). Sometimes his tics are vocal and disrupt quite meetings and sometimes we need to reveal the fact that Elliot has Tourettes. We would never say that Elliot is a Tourette but rather that he has Tourettes. Well, it is just a matter of semantics but then again sometimes semantics can make a big difference.

    Verity is a blessing. Verity is a baby girl. Verity is a baby girl blessing who has Downs. I think that said in this way it shows a level of acceptance. There is no longer an intimidation of the “label”…it’s something that she has not what she is???? Does that make any sense?

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