Friday, July 27, 2012

What I Would Tell You -- The Heart of a Special Needs Mom

“Do for others what you would want them to do for you. This is the meaning of the Law of Moses and the teaching of the prophets." (Matthew 7:12, ERV)

It occurred to me today as I was running around trying to return a glass baking dish that someone had delivered a meal to us in back in April after my son had been hospitalized with a bleed in his hip joint.  "Why do people who are kind enough to bring you a meal when you're in need never think to bring it to you in a disposable container?"  I wondered if people who have the best intentions of trying to relieve our stress ever thought of how much stress they add when we are living in a crisis and yet have to get their prized dishes back to them.

As I mulled this over in my mind, I realized, there are probably many of the nuances of raising a child with a chronic illness or disorder that would never occur to the average person.  For instance, consider yourself extremely lucky if you get a thank you note from any of us.  Will I call, Facebook or e-mail you?  Sure.  But a formal, handwritten note is typically beyond what our family life will allow.  I am too busy either trying to fill out yet another set of paperwork for one of my kids or pay some past due bills to write personal notes any more. 

In fact, there are many things that the demands of various special needs edge out of our lives.  Want to visit an immaculate home with spotless carpet and new paint?  Just pass by our place if that's what you're looking for.  With all of the doctors appointments, treatments, behavior management, insurance work and applications that never seem to end, a clean house seems like a distant memory.

Forget asking us to go to a sporting event or an expensive vacation or dinner.  All of our "disposable income" goes to doctors and therapists.  In fact, I find it very humbling knowing that people whisper in disgust behind our backs because we can't reciprocate on footing the bill when someone has been so kind to pay for our way on something.  Everything we have is a monument to the good provision of God.  He gives what we need -- no more, no less.

What else would I tell you?  Families like us always need help.  We are in this for the long haul.  This isn't a temporary condition that will get better some day.  I know that makes you feel uncomfortable, but we didn't ask for this.  Please don't always make us beg for assistance.  That also adds stress.  What a blessing it would be if someone treated us the way they would want to be treated!  The sweetest relief in my twelve-and-a-half years of special needs parenting have come the very few times when someone unexpectedly showed up at our door with a meal or volunteered to take the kids to give us a break or said, "I'm going to help you clean your house," all without expecting anything in return.

It can get so isolating.  Being stuck five hours in a small, windowless exam room every six months for a hematology visit is only the beginning of our alone-ness.  Because we are a high-maintenance bunch or our daughter with ADHD, SPD, asthma and allergies is a handful, we don't get included in the fun we see our friends enjoying together.  Since our son can't play many sports, the friends that have moved on pursuing such activities have left us by the wayside.  When there is a medical situation, we can't make it to church.  It sure would be nice to know that our church family misses us at times like that.

I am not trying to make excuses or throw a pity party.  The fact is, our lives are just hard.  It takes every ounce of strength to walk uprightly by faith when other children ostracize your child or other parents judge you or you are in the health room at school for your second or third visit this week.  I can't sign up for the PTA or prepare the Campbell's Soup labels to raise funds for the school.  I cannot help with Girl Scouts or chaperone at the school dance because I need every spare minute just to try and keep up with basic demands.

Our lives are messy.  As with so many other things in life, there is so much you don't see.  But we feel incredibly blessed.  All we have to offer you is ourselves.  And if you can handle that, you can be with us. We try to generously give ourselves as we are able.  We know how much we have been given, and we want to give back.

Oh, dear.  I've said too much now, haven't I?  Well, I guess I'm used to others shaking their heads at me by now.  But if I could leave you with one thing from my heart it is this -- Little things mean so much.  Through our struggles, God has stripped us of the unimportant things in life and replaced them with what really matters.  So, in the final analysis, any act of kindness shown to us is deeply appreciated.  Unlike the average person, we understand that every little gesture is a big deal.  Simple understanding, acceptance, love and compassion is what we need.  There is much joy to our lives, but that doesn't mean we're not hurting.  If you find it in your heart, a simple hug would even do.

PRAY:  Open the eyes of our hearts, Lord.  Help us as humans to treat others the way we would want to be treated.

5 comments:

  1. Fabulously written and undoubtably true! Thanks for posting!

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  2. This is lovely and so very true!

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  3. Beautiful! It's like you opened up my heart and transcribed my feelings about this right here in your blog post. Thank you for saying so much of what many of us want to say, but never do. You and your honesty are beyond a blessing to me. :)

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  4. I had a different image in my mind of what kind of mom I would be. I'd be the room mom at school, and I'd volunteer at Vacation Bible School in a big way. I'd be a community volunteer. Autism changed that and reality became something very different from those dreams; instead of being the giver that I thought I'd be, it put me into a needy position, and I grieved the dream I'd had. I don't think outsiders understand that. I sure didn't before a child regressed into autism. I am volunteering a little, now, showing up last minute at events where a floater is welcome, and it feels soooooooo good. ;)

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  5. Thank you, Barb, for sharing all of this!!

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