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Hope and Mommy

There’s no time to think once you become the parent of a special needs child.  I mean, literally, there is no time to think.  In reaction mode, you are simply expected to be on every minute of every day.  You anticipate constantly, actively seeking out ways your child could injure himself, choke on something, and escape from the house.  It’s very much like being on a never-ending covert operation to protect those in your care.  Once a well-meaning pediatrician who isn’t raising special needs children said to me in jest:  “You know, you could order a couple of those big bubble balls and just roll Hope and Charlie around inside of them all day every day.”  He laughed.  I didn’t.  I’ve had to reclaim pinched legs from the angry mouths of furniture.  I’ve had to dig a whole piece of Chex cereal out of a throat with my fingers as my child was turning blue.  And I know what it’s like to search for my little girl after she managed to quietly sneak away from a beach house after seeing a little boy playing ball down the street.   Give me the darn bubble ball!

While it’s harrowing and not for the faint of heart, I must tell you, being a special needs parent is slowly transforming me into someone quite different…maybe even better.  In three significant ways, in fact, this adventure has forever changed my view on life:

Lesson #1:   To be remembered means everything. 

I don’t sweat the small stuff anymore.  For instance, I no longer fret over not being invited to a party, a shower, a wedding, or even a family holiday dinner…I get it.  I’m different now, and there are people who will never feel comfortable with me and my unconventional lifestyle.  As a result,  I’ve learned that missing out on an invite just means I can use “babysitter” time to do something I love, whether that’s a movie, a dinner out, visiting the library or a museum, or laying on a beach with my toes in the sand.  On the other hand, however, when those invitations do come, albeit they are very rare, I appreciate them more.  To me, each invitation says:  “I know you’re in the trenches every day, secluded from the typical world, but I haven’t forgotten you.  Even though you might not be able to come to my event, I want you to know that you were thought of.”  Yes, to be remembered, means everything.

Lesson #2:  Collecting memories is more important than collecting dust.

Continuing in the vein of not sweating the small stuff, I also don’t give a hoot about whether my kids or my house look like they’ve been torn from the pages of Southern Living Magazine.  My kids have sensory issues and neither like to wear clothes, so if I can manage to keep their private parts covered, it’s a good day.  And my house?  Thing-a-ma-bobs and trinkets become projectiles for non-verbal, temperamental kiddos (and sometimes for momma too)…so, my house is gloriously bare for the most part.  My kitchen?  It never closes.  And I spend more time in the laundry room than in my bedroom and bathroom combined.  I am a first-born who loves order, schedules, things that match, and clean smelling things (and people) … God has played a hilarious joke on me.  But you know what?  When my kids allow me to fix their hair and dress them up, and on those rare occasions when my house smells fresh and looks crispy clean, I bask in it.  I mean, I sniff my little ankle biters and kiss their chubby cheeks until they’re shoving me away … and I walk through each room taking in the order of it all.  In those times, though, I often reflect on the person I once was and regret how much time I spent on things that don’t matter.  Pretty houses and fashionable clothing rot away and disappear, but the time spent mending a hole on a stuffed teddy bear’s foot, holding a hand that has just made a mud pie, and jumping up and down with your kids on a bed that hasn’t been made yet…those moments will stand the test of time.

#3:  Love is always the answer to everything. 

All of this brings me to the last and most important point.  As a parent of a special needs child, I realize time is fleeting.  Kids who have special needs often don’t enter the world with the mightiest of immune systems.  When they go down, they sometimes don’t recover.  I’ve spent months in a hospital as my daughter has gone through three very serious open heart surgeries, and on one of those occasions, she coded.  I can take my mind back to that moment and replay it all in vivid detail.  In that instant, I realized how fast I could lose her and how quickly everything would change.  An invisible switch flipped inside of me that day forcing me to look at my life in a brand new way.  If everything can change in an instant, then I must make every attempt to live my life to the fullest each day.

My favorite apostle of the twelve is Peter…probably because he didn’t always get things right, but still managed to love and serve with reckless abandon.  Consider these words:

1 Peter 4:8-11 ….”above all things have fervent love for one another, for “love will cover a multitude of sins.”Be hospitable to one another without grumbling. As each one has received a gift, minister it to one another, as good stewards of the manifold grace of God.  If anyone speaks, let him speak as the oracles of God. If anyone ministers, let him do it as with the ability which God supplies, that in all things God may be glorified through Jesus Christ, to whom belong the glory and the dominion forever and ever.”

The greatest way being a special needs parent has changed me and my view on life is by chipping away all of the minutia, trivialities, distractions, surpluses and excesses in my life.  This incredibly challenging journey has broken me down and has allowed me to “see”.  So if I grab your neck the next time I see you and say “I love you” … well, you’ll know why.  (and if I don’t, it’s only because you’re giving off some sort of vibe telling me to keep my danged hands to myself.)  

Know this about me.  My home is open.  My heart is open.  I always want to hear from you.  I want to talk to you and to hear your voice.  I want to hurt when you hurt and to rejoice when you rejoice.  I love you.  I honestly love you.

“…and the greatest of these is love.”

Oh, how I rejoice at being called to be a special needs parent.  For once I was blind, but now I can see!