Down to the heart

August 27th, 2010

Does this look simple?  This Down syndrome thing?

It isn’t.

Not for me, anyway!

Complicated isn’t necessarily harder, mind you, just like simple isn’t necessarily easier.

When I sin against someone, the right thing to do about it isn’t complicated.  I must humble myself, admit that I was wrong, and ask forgiveness.  Simple.

But not necessarily easy.

Well, for me, Down syndrome has turned out to be the opposite.  It is complicated, but not necessarily hard.

There’s so much about this I haven’t figured out yet.

Way back in the early days of this journey, part of what I had to accept about Verity’s Down syndrome was that I didn’t truly know what it was that I was accepting.  What would Down syndrome look like or act like on our daughter?  I had to wait and see, along with everyone else.

That part hasn’t changed much!

I wonder about a lot of things.

She is good with her hands (and pulled her tube out for the first time this week).  She can focus on my face for very long periods of time.  She can vocalize with a consonant-vowel combination (and her “goo” sounds just like her siblings’ did).  She has a favorite stuffed animal and will smile at it and try to grab it.  She is very curious.  She seems to pick up new skills readily (except for eating).  Are those good signs?  Do they mean anything for her future?

Is her sweet, pleasant, affectionate nature just Verity being very, very Verity?  Or is it the Down syndrome?  She loves being held close, and I can hardly wait until the weather is cool enough that I can put her in the sling.

There are times when I study and study her face, and can’t see the Down syndrome, and other times when it’s written all over her face.

What exactly is it that I am looking for?  She has Down syndrome on a full-time basis, so all the ways she looks are included in the way Down syndrome looks, right?  Or is some of it Verity and some of it Down syndrome?

And why am I looking?  Is it okay that I watch her hopefully for signs of beauty and brightness?  Or does that just come with being a mother?

Sometimes the answer doesn’t matter one way or the other, but sometimes it does matter, and I must learn the difference.

I need to know what to accept and what to correct.

I know that some things, like the protruding tongue, must be accepted now and corrected later.

I have learned that when she arches her back and turns her head upward, which she does often, it’s not okay for me to accept that as Verity’s little quirk.  Babies with Down syndrome often have weak abdominal muscles and strong back muscles and find it easy to arch their backs.  If I don’t correct that habit, it will be detrimental to her proper development of gross motor skills.

How much is she picking up of what I say to her?  Does she connect my praise with what she just accomplished?  Does she connect any of my words with what she’s looking at?

Is it okay that I hope she is alert and expressive when others come to visit?  I didn’t care if my other babies were drowsy when company came.  Why do I hope she won’t cross her eyes at them?  It was funny when my other babies did that.  Will others understand that nobody can always be at their best, and not judge her by her worst?  Will they see her worst through eyes of love?

Am I giving her enough stimulation?  Will it hurt her to have down time, or should she always be watching or listening or moving or being moved?

Will it delay her fine motor skills that I keep her in infant gowns with sleeves that fold over her hands, so she can’t pull her tube out?  (Yes, I am to blame that I had to re-insert her tube this week.  Tried a cute little outfit on her, she fell asleep, I laid her down thinking it would be safe because I was not leaving the room, she woke silently, and pulled that thing out silently!)

Is the air conditioning (to keep her from sweating in her long sleeves) contributing to her congestion, despite the humidifier and air purifier?

It gets much more complicated than that, believe me.  Which pictures I delete from the camera card, and why, and will I ever change my mind about them?  My complex feelings when I see an older child with Down syndrome who hasn’t learned tongue and mouth control.  Realizing that we are in an experimental generation, and don’t actually know for sure that all the therapy will make a difference for her thirty or forty years from now.  Wondering if any of my questions and feelings mean that I still haven’t completely accepted my daughter’s Down syndrome.

But when I get down to the heart of the matter–

–which is another way of saying “the first and greatest”–

–I see that it really is uncomplicated after all.

Because more than anything else, anything else, we want Verity to belong to Jesus.  We want her to love the LORD her God with all her heart and soul and mind and strength, and love her neighbor as herself.

The same as we want for all our other children.

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14 Responses to “Down to the heart”

  1. Samantha says:

    “Because more than anything else, anything else, we want Verity to belong to Jesus.  We want her to love the LORD her God with all her heart and soul and mind and strength, and love her neighbor as herself.
    The same as we want for all our other children.”    Tears here, Susanna.  That is so true.  None of the other things will really matter in eternity.  “For what shall it profit a man if he shall gain the whole world, and lose his own soul?”   “And thou shalt love the Lord thy God with all thy heart, and with all thy soul, and with all thy mind, and with all thy strength.”  “Let us hear the conclusion of the whole matter:  Fear God, and keep his commandments; for this is the whole duty of man.”  These are verses that come to mind.  Thank you for sharing your heart.  Verity is so precious and very blessed to be a part of your family!

  2. stephanie says:

    Another beautiful post coming straight from your heart. You have written every mothers fears and expectations. Last night Em was playing and her ds was so apparent I just sat and stared at her. Wondering, just wondering. And some days it’s not there at all,lwhich reminded me of an article. i don’t know if you saw it, it was floating around for a while, but it amazed me and I think of it often, here is the link.
    It’s so true.

  3. Anna T says:

    Yes, my prayer for Jacob is to love the LORD his God with all his heart and soul and mind and strength, and to love his neighbor as himself.  Our minister told us a story of how he traveled with a Christian speaker  and was the worship leader.  His pianist accepted Jesus as her Lord and Savior after her brother said that she “Needed Jesus in her life.”  Oh yes, her brother has Down Syndrome : ) !!  Blessings to you and don’t worry to much about stimulation, your fun and busy household is great stimulation and motivation for Verity.  Our OT said that Jacob will want to move because of his 2 year old sister (and she’s right).  I’m praying for you and for her eating to improve. Happy new school year!!   

  4. Andrea Mann says:

    This is nearly exactly how I feel with our girly (aside fromt he fact that it’s a different disorder).  Thanks for writing this, and for helping me to realize even more that what I’m feeling, and what you are feeling, are the ways that most people walk through acceptance. 


  5. Lara says:

    she is a beauty!!!  and YES!  what truly matters is that she Love the Lord her God with all her heart, her mind and her soul!!! 

  6. Patti says:

    tongue concerns? check.
    to delete or not delete pictures? check.
    over-stimulated/down time? check.
    looking for signs of beauty and brightness? check.
    I could go on and on, but then I’d just re-write your post:)
    YAY- we’re normal Mamas!!
    Hugs to you from one wondering Mama to another;)

  7. Ashley says:

    Verity is a baby with down syndrome; she is not a down syndrome baby :) Just think about it that way and it’ll make it easier to determine things!

  8. Beth says:

    In those very first months I was preoccupied with similar thoughts and worries.   What I’ve discovered over time is that when Hannah was born, she seemed to be 90% Down syndrome, and 10% my baby.  During that first year, the year of waiting to see what she *might* do, the percentages switched–by her first birthday she was 90% Hannah, and 10% “Diagnosis”.  As the years have passed (she’s now 12), I rarely think about Down syndrome and how it applies to her.  I rarely see it on her face–all I see is plain old Hannah.   I guarantee that this will be your experience as well.  Verity is Verity–she is going to grow in love and wisdom, and she will teach you that she is not anybody but the beautiful person who was knitted together inside you.
    You can throw out those ideas of you thwarting/inhibiting her motor skills–as you’ve learned, she’s got them lying in wait. There is little that you can do to inhibit a child’s natural development.  I know it’s hard to just expect her to be a regular old baby, but do your best–she IS a regular baby.  You’re the only one who can love her like a mother does (which, I’ll admit, does include some worrying); leave the therapeutic worries to the therapists.  Assume the best, not the worst.
    If you’d like to have a “chore” to give her sensory input in her extremities (as if you don’t have enough to do!), I’d suggest doing deep pressure.   Start with one finger at a time, and give it a firm squeeze–not so hard that it hurts, but firm enough that the nerves can’t help but get input.  Do each finger individually, and then using both of your hands, gradually move into the hand, wrist, arm, making sure each area has similar sensory input.  Do each left and right arms.  You can also do the toes/legs.   Give her sensory input on her face as well–especially around and in her mouth (easy to do with kisses, washcloth, bumpy textures).

  9. Sandie says:

    I sat and stared at Christopher for many wks, too, after he was born.  There were many days he did not “look” like he has Ds.  He “looks” more like he has Ds the older he gets.  But when he was a baby, he just looked like one of my babies.  The tongue can be a challenge, and if a person with Ds does not have good control, it is not always because of a lack of training.  Some have lower muscle tone than others.  Christopher has very low tone, but we continue to work toward the goal of better posture, which helps keep the chin up, tongue in and mouth closed. 

  10. Marilyn Osborn says:

    ((((((((((((hug))))))))))))))  Love you, friend!

  11. Aunt Erma says:

    What a beautiful way of expressing yourself!  It’s good to be honest.  Read the Psalms; David was.  And, you have a treasure in the friends you’ve made on your blog.
       You have a beautiful baby!   And, a beautiful family.  God bless you all.  He entrusted Verity to two of the best parents in the world.

  12. christine says:

    Could it be you’re dealing with a little fear? I will pray over you tonight. Jesus cares for little Verity and loves her so much more than you… God bless, dear. 

  13. ((((Susanna)))  May the lord bless you, He shines through your writing…  Thank you for sharing your heart with us and of course dear Verity!

  14. Kelly says:

    My mom directed me to your website…she stumbled upon the post where your children were staying with friends and they made pickles, mud pies and washed ceilings and loved it!  :)  Then I found this post.  It got me in the heart!  Every mom wants the world to see their little ones as they do!  So much more difficult when you KNOW what the world is probably gonna see first and focus on.  But I’m glad to have read this post because it helps me to be able to be more compassionate in the way people need the compassion.    There’s a sweet girl in our community who’s son also has ds.  I always wish I knew what her sensitive points were so I don’t blunder onto them and I wish that I knew how I could make her and her son feel good about crossing my path that day.  I know that I love coming across people that see my children as the treasures I see them as…and if I could share that feeling with anyone, this lady is one of the people I’d want to share that with.  Thanks for sharing a little bit of your heart!

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