Friday, July 8, 2011

Dear 'Help, so scared of raising Down Syndrome baby',

Welcome to the blog.  As you click around this blog you will notice that I publish stories that are happy "you can do this" kinds of stuff.  Sometimes I publish "how am I doing this, this is so hard" stuff, too.  A lot of it is just "life is normal" stuff.  But I will tell you something that I was thinking about today, since you Googled and found yourself here:

This journey, the Down Syndrome part, it can be hard.  An adjustment.  It is admittedly inconvenient to have a 5 year old, 40 pound boy, who is pulling 2 year old stunts around the house.  But here's the thing: there is an element to this, hmm, 'Down Syndrome lifestyle' that just feels so, I don't know... lucky.

The word Delight comes to mind.

He's stunning.

When I meet a new parent who has recently welcomed (and there are shades of 'welcome') a baby with Down Syndrome into their life, joy just starts spilling from my insides.  If I can manage to keep the silly grin under control, there is still the sparkle in my eye.

You see, it's okay that it is hard right now and that you don't know what to do.  I know how it hurts in your heart and every few moments your thoughts are injected with the words "Down Syndrome", and that leaves you feeling very small in the face of something that seems so big.  I know you probably feel a lot of guilt for thinking things like "I don't want a baby like this".  It's fine to feel all that stuff, but...

There is more to this journey than what you feel right now.

So, let me break some of this down for you, because I know from where you sit you just can't yet know what is ahead:  Impossibles will become possibles.  Things will surface as a part of Down Syndrome that you never thought of, but you will decide you like (oh the smiles! the joy! the softness. the spunk! the slow and steady development.).  Your knowledge for special needs, and indeed special acronyms (oh the acronyms!), will grow, and it will blow you away that your life ever existed without this knowledge, this wonderful community, this inspiring child.  Your ability to adapt to this life will astound you.

Some day you will sit back as you watch your son or daughter play imaginatively (after having wondered in the beginning if "imagination" was possible) and just think "Wow, I have a kid with Down Syndrome".  This thought will be followed with "I must be really lucky".

Or, how about this one: Deeply, Undeservedly Blessed.

So, parent who Googled "Help, so scared of raising a Down Syndrome Baby", if you can read this letter through your anxiety and the place of fear you are in right now, try to hold on to just this one thread of hope from a mom who has been there:

You can do this.  You are not alone.

As much as we pour into him, he shores us up as people and a family.

When you hold your baby in your arms, stop and feel how soft her body feels.  How she melts and molds her body into the curve of your arm.  Totally, completely relaxed.  You will not hold another baby who will rest in your arms and unfold into your care like that.  So it might be the low muscle tone, but consider this:

When she rests in your arms so fully, so unfurled and vulnerable, think about a Parent who absolutely offers the same to you.  Whose forethought it was to give you a gift so precious, though you never thought to ask for it.  Whose intention is to lend His full strength to you as you figure this out day by day (you don't have to have it all figured out now!).

Joshua 1:9  "Have I not commanded you?  Be strong and courageous.  Don not be afraid.  Do not be discouraged.  For the Lord your God will be with you wherever you go."

That's a promise.  My secret.  How I get by.  How I thrive as a parent and a person.  Dependence in Jesus.  Ya.  That's basically it at the bones.  And one foot in front of the other.  And Charlie cuddles by the dozens.

Listen, I'm doing the parent thing times three. It's just not easy any way you slice it.  Not with special needs, not with typical development, not with an early talker or a late one, not even with an easy sleeper (though I swore that would be the answer to all our problems the first two babyhoods we endured, uh, experienced).

Simple, life is not.  Good, it absolutely is.  Please take heart.  E-mail if I may pray for you.  I'm always up for that.  Really.


Mom whose imaginative 5 year old son with Down Syndrome astounds and delights her daily.


Ann said...

Wow. Amazing and beautiful!

Rae said...

This is so beautiful, Kim. Love!

Cindy said...

Excellent post! I know it will encourage many new parents out there.

Ilisa Ailts said...

wonderful and thank you for being a support for other parents.

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