I Learned A Little Bit About Who I Am

The seminar we attended over the weekend on Inclusive Education was absolutely wonderful. I am so SO glad that I had the opportunity to attend. I learned way more than I even hoped that I would, and reached the saturation point where I just couldn't absorb any more. I learned as much from the other parents there as I did the speakers.

But aside from all the learning about education and sharing about our dear children, I noticed that all the moms there looked old and weary. It was frightening. I'm not talking about age, I'm talking about a look that goes beyond the encroaching crow's feet and silver strands sneaking in. It stemmed directly from the stress of living in this world of the disabled. Of being the primary caregiver for someone who may never outgrow the need for mom to be there. Of fighting for that child's every need, every step he takes in the world. And I wondered if I looked like that, too. And if I don't yet, how long will it be before I am old and weary?

And from these moms, I realized that that very look told the world what they were all about. Imagine, if you will, that someone did your child a grave wrong. You'd go all Mama Bear on them, flailing your arms and gnashing your teeth and ripping the wrong doers limb from limb. And although you'd wish to do so physically, that's exactly what you'd feel like inside. And this is the way we live our lives. We fight to have our children included in regular school classrooms, we fight against prejudice, we fight against bullying, we fight against ignorant doctors... And this constant fighting is a steel thread deep within us that not only makes us old and weary looking, but a formidable foe in the face of a percieved threat. There's little that will intimidate us, because there's so much that will intimidate our children.

And yet, despite the harshness of what was just said, it's that steel thread that holds us together in the tough times. When things get so overwhelming that you think you just can't take it anymore, that steel thread is there inside bolstering you up because you know your child is depending on you to make things right. You cannot fail. It's not an option.

But all this is balanced with a gentleness that goes beyond what an ordinary mom possesses. It's the gentleness born of patience in dealing with the autistic child for the seventeenth day in a row of non-stop tantrums. Of learning not to apologize when your child doesn't meet the world's standards, and yet loving that child to distraction because of it, not in spite of it. Of knowing that your child may never mature into a man or woman but will always be your dear little baby that needs you so, so much. And this gentleness softens that harshness enough to make the world wonder what it is about you that makes you different.

We did not choose this world that we live in, and we're not making the best of it. We're making it the best for our children, and that's even better. I have so much respect for parents of disabled children. It's not an easy life, but the unconditional love that's here is better than any compensation the world could give in return.

29 comments:

SuburbanCorrespondent said...

It's beyond my comprehension. But I hear that same message from every mom I know who is in your situation.

Sandy C. said...

What a poignant post. I have no words, only respect.

Burgh Baby's Mom said...

I'm glad to hear the conference more than met your expectations. Hopefully you were able to find some comfort in being surrounded by others who have already won some of the battles you are currently fighting. Even though I know you will win every one of those battles, I still find it frustrating that you even have to go through it all.

That photo of Micah is incredible!

pb&j in a bowl said...

That was incredibly well written. I have always thought that God knows exactly who to place the special needs children with. He sees a stregnth within, and knows that they will fight- tooth and nail- to give them the best life possible.

Good job!

The Sports Mama said...

You and your family are truly inspiring, Karen! And just as you feel blessed to be parenting Micah, I'm positive he feels so lucky to have you for his mama!

Kellan said...

This was a beautiful post, Karen. The steal thread - beautiful! I think my favorite of all your posts are those you write about Micah as they are so inspired by love and devotion and dedication - they are truly inspirational. Thank you for this truthful post. Take care - Kellan

Tootsie Farklepants said...

"Of learning not to apologize when your child doesn't meet the world's standards, and yet loving that child to distraction because of it, not in spite of it."

This line. That one right there. Beautiful.

Wonderful World of Weiners said...

Micah's face makes me stop and catch my breath every time. He is simply beautiful....

I could get lost in his eyes...

Hallie :)

Lori said...

what a beautiful way to look at the situation and realize you weren't punished but blessed. I know it is hard, but totally worth the fight!

brandianndesigns said...

your blog never fails to touch my heart and bring me back to earth. you make me remember to be thankful for each and every day - no matter how little sleep i've gotten.

thank you

Driving With the Brakes On said...

I am so glad my children are behaving this morning and I got to do some blog hopping, because that entry and the senitment in it has made my day! I have said it before, and I will say it again: you are an absolutely amazing person, and Micah is so blessed to have you for his mother.

Jonny's Mommy said...

Beautiful post. So well put and so well written. I don't know first hand what you are dealing with. You may have learned a lot about yourself, but today I learned a lot about you and mothers who face challenges similar to yours. Thanks for sharing a piece of yourself....

Andrea said...

I am glad you had a good time at the seminar. I know what you mean when you talk about the whole "Mamma Bear" comeing out. You do a wonderful job and have such wonderful children.

Maria said...

You have to fight, until the day you die. These are our kids we're talking about! I guess the more kids you have, the more fights there will be. Love the picture.

THE MOM BOMB said...

This post took my breath away. Clearly, you've cultivated an inner reserve of strength far beyond what most of us will ever know. What lucky kids you have.

jessica said...

so beautiful. micah and the others are so lucky to call you mom.

caramama said...

I also have so much respect for parents of disabled children--and so much respect for you, Karen. You are amazing, and your children are very lucky to have you as their mom.

Jen said...

What a heart felt, honest post. You are doing wonderful things for your son. Hang in there.

Colleen said...

wow...that was simply beautiful.

Nap Warden said...

Well my dear, you brought tears to my eyes. I have no words of wisdom for you other than that you are a wonderful Mom:)

Pam said...

What a powerful and well written post! you touched me deeply with this one! That picture of Micah....sums it all up so nicely.

Glad the conference went well and you could express yourself here!

ALF said...

I have an immense respect for you.

MommyJ said...

just wanted you to know I really loved this post. It touched my heart and made me think and made me want to meet you and give you a hug. And perhaps give Micah a hug too.

Don Mills Diva said...

What a beautiful post - thank you for sharing it - I was really touched.

Keri said...

I bow with great respect and admiration at your ultimate role as a mom of such a special loving individual. I thank my stars that there are such great people out there to raise and guide our special young.

The photo is simply breathtaking!

Cecily R said...

You made me cry. I don't personally understand your situation, but from what I know about Micah and about you, there's no doubt in my mind that he's in the right place, the right family, being parented by the right parents. Someone sure knew what He was doing.

Bia said...

This was beautifully written and it really moved me. Micah is indeed lucky to have you as his mom . . . you are his champion.

God bless.

Shellie said...

That was beautiful! I am amazed at all you do. I do know some moms that don't have that look. I don't know if they are moms who managed to get past that stage or they learned how to take care of themselves better, or their children just got older and easier to care for. I will have to ask a few of them...

Michelle said...

what a beautifully written post! I'm glad you and hubby were able to get away for this seminar - sounds like you really did get a lot out of it!