On the Other Hand…

by ericasteele | Feb 2, 2013 | Choices, How to deal with pain

So, I (Erica) thought I would discuss how life is hard and the real stuff about having a child with special needs, then I thought I would talk about how we deal with it…so here it goes.

They say that having a child with disabilities can break your marriage.  There are a lot of stats thrown around that are a bunch of bologna (which naturally infers disgustingness)

I read a great article, that was actually researched to some degree, on divorce in families with special needs children.  It actually seems as though the stats that we have been told for so long aren’t quite as devastating as you might have thought.  In some cases, children with special needs can actually make a marriage stronger.

On our blog, we often say that Kennady is a blessing, and she is, and focus on all the good that life with her brings, which she does.

However, there are plenty of times that just plain stink.

It IS hard having a child with special needs.  It isn’t always cheery, fuzzy and warm.

I don’t want to turn this into a complaint session, primarily because it is not a complaint, simply a statement of truth; secondly, because I strongly dislike whining, complaining and general martyrdom for things that one should not attain martyr status for.

Recently, I was watching a documentary on vaccines and there was a mother on there that had a son with Autism.  She made a statement during the documentary that was something along the lines of {people say that children with special needs are a blessing, but it isn’t.  It isn’t a blessing to have a child that isn’t the way that they want to be, or that we would want them to be.}

I have thought about it before, about how our perspective isn’t the same as other peoples.  This really hit home for me.  It was one of those uummpfff moments.  A punch to the gut in your brain.   I don’t have a child that is mobile and could potentially harm themselves or someone else.  We don’t experience lots of really hard things that other families do, but we have our own times.

Our focus through this blog, is to bring to light the joy our children bring us, regardless of their abilities.  This joy that we are shinning a light on, often leaves out the reality of the shadows.

No matter how much joy our children bring us, we have some tough mountains to climb.

For some families, it is making sure you have extra locks in place so that your child doesn’t run out in the middle of the night.

For others, it is sleeping with your child beside you every night of their life to ensure that they are able to breath.

There is an immeasurable list of things families will do to preserve life in a way that keeps everyone the happiest, and if at all possible, sane.

Here is a list of things that I find very frustrating/hard/crappy/inconvenient, about life with our special needs child.

1.) Going out in public and needing to change a diaper of a child bigger than the infant/toddler changing table is made for.

2.) Your husband having to change diapers on his adolescent daughter.

3.) Puberty

4.) Isolation – Because you can’t just leave your child with complex needs with anyone.

5.) The unknown

6.) Accessibility in stores, restaurants, other people’s homes

7.) The large amounts of supplies, kits and randomness needed at all times

8.) D.N.R. orders (Do Not Resuscitate)

9.) Medication times:  6a.m., 2p.m., 10p.m. – always

10.) Not being able to know how my child feels specifically

All of these things are part of our daily lives and things we have to process.

How we cope with the reality is pretty straight forward.  We pray, admit our shortcomings, we are open about our fears, we surround ourselves with our church and family, and we laugh…a lot.

Robin and I deal with a lot of things through humor.  It’s just how we make it through.

When we started tossing around the idea of a blog, we came up with some of the following titles.  We ended up with Made Meaningful.
Some of these are funny. Some are serious.  Hopefully, you will laugh.  If you are offended, please skip to the next title, maybe it will un-offend you.

• The grass is yellow on our side
• Hearts that serve
• So you wanna have a kid…well he is going to be sick
• H.o.P.E. floats
• Life is beautiful
• Imperfectly beautiful
• Oh $&%@, I have a handicapped kid!
• Colorful
• Life Junction
• Empty promise
• Awkward!
• A Special Heart
• Crossing a/the broken bridge
• Bridging brokenness
• Life Is Beautiful
• If you thought the first year of marriage was hell…
• A meaningful life

Life here in our house is probably a bit skewed to the humor side.  I have often said that if Kennady could talk, we would all be in trouble.

One of Robin’s favorite things to say when I call home while I am out, is, “Kennady is throwing up, Jude has a fever and Avery is feeding the puppy chocolate”.  None of which are true, but some how that sick mentality seems to be funny.

That, or, he answers the phone as if he is just waking up from some long winters nap. “uh…hello…”

Basically, we fight, we laugh, we cry, we laugh…uhh is this turning into an Alanis Morissette song??

The bottom line, having kids with special needs is hard.  Making the choice to embrace what we have and focus on the good is far better than living in the darkness of resentment and “life isn’t fair”.

See Robin’s testimony to the Texas Legislature

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