What Happens When We Are Gone?

The company where I work does a job for a regular customer a couple times a year.  She has a child who’s somewhere on the autism spectrum. 

From the few times that I have actually seen her, she seems to be fairly verbal, and smart.  But, she has also been in the same school as Amelia for most of her life. 

Although, I think, its been off and on for the last few years.

The mother is an older lady.  In her eighties, I believe. 

The daughter is somewhere in the fifties range.  They live together, with no one else but a part time housekeeper around. 

When I’m there, I see an elderly mother with a special needs daughter, and I wonder what’s going to happen to the daughter when the mother is gone. 

Where will she go? 

Who will look after her? 

How will she handle being thrust into a new life situation?

I know that a lot of ASD children don’t do well outside their comfort zones.  I see it with Amelia all the time. 

Though she does seem to do better some days than others.  But, a routine, or structure, or simply the known, is what these kids are used to.  What they prefer. 

Sometimes, it’s what they need, or require, to be able to function.

So, every time I work in that house, it makes me think of the future. 

Not that I need any help in that department, by the way. 

My mind is always fixated on it, because of Amelia.  And her circumstances.

I think about the future.  Her future.  You see, when she reaches eighteen, I’ll be sixty-three.  And that scares me.  Not for me.  But for her.

See Amelia was not born to us, but rather to our niece, who was unable to care for her. And while she is not ours biologically, not that it matters, she is as much a part of our family as our other children.

I knew, well, both Tammy and I did, that bringing a child into our home at our ages would present us with a different set of challenges. 

More so than our other children.  But, I figured that was the stuff we could deal with as it came up. 

We were pros, after all.  I mean, we had four kids between us, and a one hundred percent success rate.

And by that, I don’t mean our kids turned out perfect.  What I do mean, is that not one of them died during the rearing phase.  And that equals success.  For me, anyways. 

Plus, they’re happy, healthy, and pretty good kids.  In my honest opinion.

In the beginning, when we first brought Amelia home, I never worried about the getting older part, because that’s what parents do. 

Just like our children.  But that was before.  Before the diagnosis.

What makes it more difficult now, us getting older, is that we have to worry about what will happen to Amelia when we are gone. 

With typically developing children, you know they’re pretty much going to be all right without you. 

It might be difficult for them to adjust, as it has been for me with my dad’s passing, but not impossible.

Our kids will continue on, after a fashion, as usual.  Yeah, there will be a few shed tears.  I hope. 

Probably some squabbling over the junk in our house.  Well, maybe not.  It is junk.  And there’s the adjustment phase. 

Then life will go on.  For our typically developed children.

But what about Amelia? 

How will she adjust? 

Will she even adjust? 

Will she be able to understand why mommy and daddy are gone? 

How will it affect her daily routine? 

Will she struggle?  Will she regress? 

Or will she simply move on?

These are questions for which I have no answers.  And, most likely, no one else does, either. 

There are just too many variables and too many unknowns with ASD.

And, this may seem vain to some, but I wonder if she will forget who we are. 

Will she be able to remember the mommy and daddy who did so much for her, and with her? 

The mommy and daddy who loved her unconditionally from day one, regardless of the challenges that came with her care.

A lot of times she recognizes places she’s been, or likes to go, but she doesn’t really mention them if we aren’t going there. 

She has her favorite restaurants and stores, and verbalizes them constantly, to the point of fits, when she sees the signs and we don’t stop. 

And we know she knows who Bubba and Sissy are, because she recognizes them in pictures.  But, when they’re not around, she doesn’t talk about them. 

It makes me wonder if that’s that how she’ll be with us.

Her great grandparents, known to her as Maw Maw and Paw Paw, and Grammy, are already up there in age (sorry, I tried to be polite). 

Her grandparents, Pops and KiKi,  are our age (well, not quite for KiKi). 

Plus, they have a special needs daughter of their own (pray for them when you pray for us).

Our oldest daughter has a business to run and our grandkids to raise.  Our son is a little too wild and carefree. 

The middle daughter has never met Amelia.  And our next youngest daughter is about to graduate college, and has plans to get a masters degree in the not too distant future (she better, anyway).

So, where does that leave Amelia?  Where will she go? 

Who will take her in and carry on with her caregiving?  Teach her?  Read with her? 

Do puzzles with her?  Bathe her?  Put her to bed? 

Whose hand will she hold and walk around the house nonstop, if it’s not mine? 

Who will be there when she wakes up at all hours of the night, if it’s not mommy or daddy? 

Who will sing her favorite song, if it’s not mommy? 

Who will be there to love her the way we do?

These are some of the questions that nag at me. 

Some of the questions Tammy and I have asked one another.  Some of the things we’ve talked about a number to times.  But, we’ve never had answers for them. 

Other than to say we’ll pray the Lord comes back before any of our fears become reality.

I was thinking about all of it again, just the other day, and the answer hit me out of the blue. 

Maybe not an answer, but at least a revelation of truth: God.  And it should have been as plain before, as it is now. 

If I’d only been looking.  Truly seeking.

Because God knows the answers.  Just as He had a plan for her when she arrived four and a half years ago, He already has a plan for the rest of her life. 

He knows the who.  He knows the where.  He knows the when.  He knows.

If He brought us to her in her time of need before, He’ll do it again with someone else. 

If, or when, it becomes necessary.  And that realization has become sufficient for me.

Will it stop me from thinking about the future?  No. 

Will I continue to worry?  Probably. 

Just not as much.  Because even God knows that trying to keep a parent from worrying is like trying to stop a raging river with your bare hands.

Written by, Nathan Bush

Nathan is a hard-working husband to one wonderful wife and father to five amazing kids. He is also a published author and part time blogger. He uses his platform to showcase his different writing styles, and has recently begun blogging about life with a special needs child. Become part of his FANmily.  Follow him @ nathanswritingagain.wordpress.com and on Facebook at NathanBush-Author.

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Finding Cooper's Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you're never alone in the struggles you face. And once you find your people, your allies, your village....all the challenges and struggles will seem just a little bit easier. Welcome to my page!


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