Choosing joy

February 14th, 2011

“From youth to age, by night and day,

in gladness and in woe.



rejoice, give thanks, and sing.”

I have a friend who has an older child with Down syndrome.  Her child is also hearing-impaired and non-verbal.

For these and other reasons, her journey has been anything but easy.

A few months ago, she wrote to me, “…I also struggle with the whole ‘having a child with Down syndrome is pure joy, it’s not hard’ concept, because in my life, sometimes it’s just hard. (Probably wrong attitudes on my part, but that’s the honest reality.)”

This one must be faced head-on.

In my determination to wholeheartedly embrace our God-given assignment without looking back, and to shine the light onto the lesser-known joys of life with Down syndrome, have I presented an imbalanced picture of it?

Is it pure joy to have a child with Down syndrome?

Or is it hard to have a child with Down syndrome?

Which one?

My questions are stuck inside a tiny box, of course.  The answers will necessarily depend on a subjective response to individual circumstances.

Even if you are a parent who does not have a child with Down syndrome, you can readily understand this by attempting to answer two more questions.

Is it pure joy to have a typical child?

Or is it hard to have a typical child?

Which one?

I suspect a thousand parents would give a thousand different answers depending on many variables.

For us, Down syndrome has meant an exposing and magnifying of factors that were already present, both positive and negative.  That can be a painful process.

It has required us to learn a new set of facts and skills.  That can add complication to life.

It has caused us to examine and challenge many of our foundational assumptions.  That can be an uncomfortable exercise.

It has already helped me to slow down, breathe, put the less important in its place, notice, appreciate, and enjoy the more important.  Doing that means letting go of some things I had previously valued, and that can be a stretching experience.

It has meant a need for a different kind of intervention than we had previously experienced as parents.  That demands more of us.

But stepping back from the minutiae of Down syndrome, back, back, back to where the details blend together into the struggles that are common to humankind…

…it can readily be seen that the specific circumstances of life are not the most vital point.  Those questions about Down syndrome are not the questions that must be answered.

I have not spent years with a child with Down syndrome who is also hearing-impaired and non-verbal.

But in my thirty-nine years, I have felt intense personal, relational, and circumstantial pain.  I have suffered through grief, large and small disappointments, loneliness, public and private humiliation, frustration, fear, betrayal from those I trusted, rejection, the death of dreams, long-term stress, the blackness of feeling like a hopeless failure, loss, the misunderstanding of others, the pull of self, and the list goes on.

Struggles that are common to humankind.

And in all these struggles, I must always come back to ask…

Am I entitled to a life without difficulty?

Is pain bad in and of itself?

What is the place of hardship in my life?

Are “hard” and “pure joy” mutually exclusive concepts?

Who controls the details of my life?

Can He make mistakes?  Is He good?

Is it possible to live with difficulty and choose joy?  Rejoice in woe?

Is joy the icing on the cake of obedience, or is it part of our obedience?

Is it really possible to count it all joy when I meet trials of various kinds?

We need joy, because He requires joy of us.

He promised that we can ask Him for whatever we need.

And He is the only one who can produce in us what He requires from us.

Yes, joy is possible, with God.

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6 Responses to “Choosing joy”

  1. Debbie says:

    FABULOUS post Susanna!!!
    It hit me right where I needed it.  :)

  2. Shauna says:

    You have a way of speaking right to the heart of things!  And great job Verity on all fours!

  3. Marci says:

    Oh, Susanna. Today I was going to ask on MOMYS how we can have peace and pain at the same time. I mean, practical *how* can we. You reminded me of much that I had allowed myself to forget amidst my pain. Thank you for writing! God gave you a gift and you are using it for Him.

  4. Elizabeth says:

    Well, I have to say for myself personally that it is great joy to have anyone with Down Syndrome in your life.
    When I was 47 and pg with Isaiah (now 7) our Susie (group home client with DS) had just gone home with Jesus and I thought for sure God was giving me my very own little somebody with DS. But He didn’t. 
    Our first daughter with DS (adopted at 2 weeks) went home with Jersus at 5 months. Her name was Joy! And every day with her was filled with Joy.
    My son Samson with DS (adopted at age 3 now 15 1/2), my first group home client M.A. has DS and has lived with me 24 years, my Susie with DS lived with me for 16 years until she died at 44.
    I have had other people with DS bless our home for shorter periods of time. All of them each with their own distinct personalities. Sometimes nice sometimes mean. No different than those of us who do not have DS.
    And yet somehow no matter how easy or hard they were to get along with, they seemed blessed by God in a way so special there are no words to explain it. Except that it brought my heart great joy, just to know them!
    I really can’t see DS without seeing joy. :o)
    Your Verity makes me smile every time I visit your blog! I love watching her reach her milestones! Thank you for sharing!

  5. Kim says:

    Great perspective and WONDERFUL pictures of that cutie up on her hands and knees! Look at her grow up!

  6. Tami Swaim says:

    Wow, it’s so encouraging that she 1.  can keep her head up looking forward and 2.  Cries when she falls and gets frustrated.  Both those two skills are very encouraging.  One shows great physical strength. And the other more on the emotional/physiological growth!  Amazing.  Way to go Verity!

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