If I'm So Special Why Don't I feel Like It?

I’ve heard the word ‘special’ directed toward me as a mother for many years, since our first child was born with Down syndrome then later developed autism. 

"God gives these special kids to special people like you because He's knows you can handle it.”

When you ask expectant parents whether they are hoping for a boy or girl the most common answer is, “I don’t care as long as the baby is healthy and normal.”  

 I have never heard anyone say, “Oh either is fine, but I’m really hoping we have a special child!”  

Other than the few amazing heroes who willingly adopt disabled children, no one really longs to have a disabled child. The irony that you are suddenly special if you get one has always puzzled me.

Regardless, I know people mean well and are trying to be kind and encouraging so I usually smile and move on with the conversation.  

On especially stressful Jon days, when I'm not much in a “Yahoo!” frame of mind, I've thought of asking (but have never done so) those who tell me how special I am, “Truthfully now, would you feel special if your child was born with ____________ (fill in the blank with any disability)?"

Our son, Jonathan, displays frequent resistant behaviors that can be challenging and one morning I remember, was particularly difficult. All directives and attempts to get Jon to school on time were met with opposition and finally resulted in Jon locking himself in the bathroom and refusing to open the door. 

I drove him to school everyday and by the time we arrived - late again - I was incredibly stressed and on the verge of tears.  

David, our youngest child, and a friend who was visiting from another state, accompanied me. We had made plans to spend the day at one of Central Florida’s theme parks, so after Jon was finally delivered to his classroom, we headed to the nearest store to purchase a few items and visit the ATM. 

I parked the car and the three of us were walking toward the store entrance when I saw him, a silver haired man wearing a bright orange vest and a big smile. He was holding a plastic container for the obvious purpose of taking donations. 

I was still revved up from my morning encounter with Jon, taking deep breaths and forcing my mind to move on to calmer thoughts and the fun day ahead.

As I walked past the orange-vested man he thrust the container toward me and in a most kind and gentle voice asked, “Maam, would you like to donate to the disabled this morning?” 

This unfortunate guy had no idea how poorly timed his inquiry was. He had no clue what I had just been through or what he was in for.  I stopped mid-stride, turned and glared at him.  

That simple question was the last straw, as the saying goes.  All the pent up frustration still swirling around inside exploded out of me like hot lava from an erupting volcano.  

Like some sort of lunatic, I yelled, “Oh sure! I’d just love to,” right in his face.

I ripped open my purse, clawed through my wallet, grabbed the first available paper bill I found and crammed five dollars inside that container so forcefully the surprised man almost dropped it on the sidewalk.  

Then I loudly declared, “There you go sir, something for the disabled.  Now what do you plan to do for their mothers?!" as I turned and stomped inside the store leaving him with his mouth hanging open and my free paper flower dangling from his fingers.

I didn’t feel very special that day. Still don’t for that matter.  If I am entirely honest, I often feel very inadequate and way too tired for this job. 
  

Jill Kelly, author and speaker, says sometimes God does give you more than you can handle so He can show Himself strong in and through you. 

In my weakness, He is made strong (2 Corinthians 12:9). 

So I've figured something out in the midst of all this. God is trying to make me into something special and this child is part of the plan, stamped indelibly into the blueprint of my life.  

This design wasn’t included in the life I had visualized when I looked ahead many years ago.  And there are times even now when I look forward and struggle with an overwhelming sense of fear and uncertainty for my son’s future.  

But this I am sure of, God can be trusted with every detail of life. If I continually lean into Him, He provides everything I need to press on.  

Keeping my focus on Jesus as I learn, in my weakness, to reflect Him to a hurting world, is the ultimate goal. How I reach that goal is often a blend of His grace and my endurance. 

I have come so far from the person I was at the beginning of this journey. I trust somewhere along the way or at least near the end of the road I will finally reach a resemblance of something special in God's eyes. 

Because in God’s kingdom, being His ‘special child’ is the highest compliment and honor! 

“For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.”  Jeremiah 29:11 NLT

No Comparison (please!)

A passion of mine is to help people become better educated about adults with developmental

disabilities and occasionally, conversations with people evolve into the topic of our developmentally delayed son and some of his behaviors.

Some folks, with a little chuckle and smile, say, “O yeah, I know, all kids act that way sometimes. Mine sure does. It can really be frustrating.” 

Or something similar.

I know they mean well and I appreciate their desire to empathize, but telling me their three year old child, five year old grandson or ten year old nephew, does the exact same thing doesn’t make me feel better.

Because it’s really not the same - at all!

It hardly seems like a fair comparison when your “child” is thirty plus and you’re still dealing with these behaviors every day.

Their struggle with a childish behavior problem occurs because their kid is still a child.  Jon is not.

Their struggle with these behaviors will end as their child grows and matures. Mine has not.

Any individual who asks about and takes interest in our son, so they can understand him better is greatly appreciated. He’s a remarkable person and we love him very much but comparing him or any other disabled adult to a toddler, elementary age or pre-teen child troubles me.

I don’t begrudge those whose children develop normally and I’m not angry because Jon didn’t.
I’m simply in a constant state of living inside this reality.

Families and caregivers, who have put in years of loving and living with an adult with developmental delays are the ones who know…

It’s not the same at all!

Special Forces Moms

Mother’s Day is set aside to honor the women in our lives who birth us, adopt us, nurture, protect and empower us, for better or worse, richer or poorer, in sickness and health. They do it because they love us. They do it because it’s what moms do.

This Mother's Day, I want to give a shout out to a specific category of moms; the Navy Seals and Green Berets of mother troops, those who were most likely drafted into a line of duty they didn't sign up for or expect, those who are in continuous boot camp and on the job training, secretly wondering if they're qualified to carry out their mission.  Mothers of children born with disabilities and/or critical medical conditions - the "Special Moms”.

No question that a mom loves her special kid, like a mama bear loves her cub, and once that child is permanently entangled in her heart she wouldn't trade him/her for anything. She may have moments when she wishes her child wasn’t so ill or limited or challenging. She might have days when she prays for less stress, worry and exhaustion. She could have fleeting dreams of packing a bag and running far away, farther than Calgon could ever take her, but she doesn't, because she knows she has been given a job to do, a unique assignment that could possibly end sooner than her broken heart can imagine or last a lifetime, with no leave of absence in sight.

Once she comprehends the blessing hidden in the uniquely wrapped treasure that is her child, the special mom gains wisdom beyond measure and learns the importance of letting go and clinging to Jesus. She matures with understanding of mysteries others are not privileged to recognize or appreciate.  In this brief pilgrimage through life with her child, she begins to shine like the jewel God created her to be: cut, polished and beautiful.

So here’s some well deserved kudos to all the overtime moms, those who ever have or are dispensing endless care and love for a very unique kid; some, long past the point of when full time mothering should end. You know who are.  You know what you do and so does God. He has sufficient wisdom, grace and endurance when the task is more than you can bear, when you feel overwhelmed and obscure. He promises His strength and grace will be perfected in both your own and your child’s weakness and frailty. Throughout a lifetime bursting with significant things to be done, every small detail you attend to, every sacrifice and sleepless night matters.

Special Forces Moms everywhere – thanks for the remarkable job you do. I pray you are infused with extra peace, joy, strength and blessed with a few quiet moments to relax, catch your breath and contemplate how important and amazing you really are, to your special needs child of course (whether he discerns it or not), to your family, but most of all to God.

Look up and be aware of God’s delight as you persevere in the unusual assignment you’ve been given. Allow the warmth of His smile to shine into the depths of your weary soul. Soak in His unending love and be revived as the power of Christ rests upon you.

HOOAH! and Happy Mother’s Day! :)

1 Corinthians 15:58 Therefore, my dear brothers and sisters, stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain.

2 Corinthians 12:9 But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.