Thursday, May 5, 2011

On the Down Syndrome Path to a Home

It's funny to say that.  It still feels kind of wild to think that I have a son who has Down Syndrome.

Wait.  What?  I know.  Where have I been, right?  But seriously.  Down Syndrome is one of those things that we all have our preconceived notions about, good or bad.  And Down Syndrome is something that happens to other families... not our own.  It's rare.

Sometimes I have to stop and remind myself we are on a different path.  There is a reason I have to be more patient with Charlie, more creative, more steadfast and headstrong and full of wit and, to be honest, willing to change my life plans.  Regularly.

Charlie is so amazing.  I know I say it all the time.  I love him dearly.  And he poses some interesting... Hm.  Considerations?

Tonight I am thinking specifically of home.  A home to dwell in.  We will be moving soon to a larger house.  Why?  This one is not Charlie friendly.  The new one will not be perfect either, but better.  An environment where Charlie will be safe, and out of trouble, and fairly independent is going to be a big thing.  For all of us.

We make an awful lot of family decisions with this little boy in mind.  We are on the Down Syndrome path.  We research and calculate and plan and try to find the best situation for Charlie, because it is what is best for him, and when he is supported, quite frankly, our lives are simpler, too.

This is challenging for me, though.  To want the best for him is natural--second nature.  I barely think about it.  Our other boys, they will do well wherever we land.  But the house hunt?  It leaves so many things up in the air.  Yes, we are moving into a better place soon, but we can't stay there forever.  So the hunt is on, in earnest.  It's for real this time.  But there are so many logistics:

Do the elementary schools have the right kind of support and programs for Charlie (and do we like it)?  Is the house on a busy street?  'Cause we can't have that with a runner on our hands.  Is the backyard secure?  Is the bathroom easily accessible?  Can the kitchen be blocked off or otherwise baby-proofed long-term?  Are there stairs?  Are they steep?  Is there a landing, or do they go top to bottom straight down?  Can the car be parked off the street?  Is the front door able to be secured?  Will the neighborhood allow a fence in the front yard, in case the front door does get opened?

And those are just the things on the Charlie list.  Our family list is complicated as well with a limited budget, and well, our preferences.

I keep thinking, "God, you have given us this Charlie boy, please provide what is best for him."  I know He will, and I'm excited!  But I have this idea that everything needs to be in place by the time he begins kindergarten a year from next fall.  That is a while from now, so that is what I keep telling myself.  It's just hard to have a laundry list of logistics, and feel deadlocked on it all.  Either the house is perfect, but in the wrong neighborhood.  Or the school is just right, but the houses surrounding it are all wrong.  Not to mention this is all sort of intimidating.  Are we doing the right thing?

If there is one thing a parent of a child with Down Syndrome learns to do, it is perform.  Do stuff.  Work at things.  I'm making the phone calls.  I'm searching the listings.  Researching our options.  But in the end it is about God opening up the right home in the right place at the right time.  I pray daily.  It is hard to wait and trust.  But I suppose... 

I suppose after all these years following Jesus' lead, it would be dumb to toil without him now.  He is the one who gave us this miraculous little boy at a time in our lives where it just did not make sense, and helps us daily as we love and raise him, and indeed all our three boys.  We thrive by Him.

I think I just talked myself into some patience.  Thank God.


Kelly said...

It seemed to take forever to get in to our own place. We kept telling our selves that we needed to wait on the Lord and he would provide just what we needed. We moved in to our place in feb and it couldn't be better. We will keep you in our prayers that God finds you the right house for your family. BTW the house next door to us is or sale ;) although I have no idea about what the schools offer and such or what your price range is. But it does have a real big back yard.

Ilisa Ailts said...

Wow, insightful post. I love all your posts! This one is just interesting because once having children I would think so differently. My first 2 were so needy that I'd have to plan more for us to enjoy ourselves (i.e. be able to relax while the kids were happy and safe). Cal is only 9 months, so I have quite the journey ahead and I often wonder how much more work it will be just to think things through.

Laurie said...

"Seek FIRST the Kingdom of God..." It sounds so familiar, it almost becomes trite, trivial, forgotten. But, think deeply about this. Is your FIRST priority/criteria to make choices that point both you and your children to God as a part of His Kingdom? Will a house or a neighborhood or a schooling choice make a difference to your participation in His Kingdom? Will those things in any way help or hurt your children's chances to learn more of Him? What lifestyle choices are you making to turn you closer or farther away from Him? Or, do they not matter one way or the other? Do not make any assumptions that your current or previous lifestyle is one you should continue, but weigh all these choices in light of Him and His Kingdom.

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