Learning to Love Life with a Special Needs Child

It was still dark out when my eyes opened. One child was still breathing quietly under the comforters, while another cozied up next to me suckling at my breast.

There was just enough time for me to put on a face and prepare for Julian’s Christmas party. If he can get 45 more minutes of sleep I thought to myself, we will be in good shape.

I could coerce him into wearing something other than his dinosaur sweat pants…And just maybe, he will take delight in his Christmas party!

I walked down the hall of his school with butterflies in my stomach.

Julian’s little sister on one hip, and a coffee in my right hand.

Maybe, just maybe.

As we got closer, we could both hear Julian’s sweet little voice whimpering the words “mommy, mommy”

I could see all of the parents who trickled in before us, eagerly waiting to record their adorable little elves. I see the little kids holding their gold wands and wearing elf hats.

Preparing for their special debut.

I immediately comfort Julian and encourage him to wear his elf hat and sing the carols with his friends. For a very proud moment, he cooperated and let us tie his hat on.

He made his way over to his favorite person; a friend he randomly calls out for while bathing, eating dinner, or getting in the car to go somewhere. The distance grows between us, and suddenly the hat comes off and the crying begins.

Before I could do anything – the singing starts and Julian shifts direction. I smile and keep my eyes locked on him, lip syncing the words in hopes that he will understand.

We all have the biggest smiles on our faces.

I look around and see a woman dressed as a police officer.

A man who is business casual, and many dressed with comfy scarves and jeans like myself.

My husband stood there in his business suit, recording this special moment. It becomes obvious that my child may be the only “different” one in the room.

I can’t help but to feel. Does my husband have a lump in his throat like I do?

I can feel tears wanting to wash over me like an ocean.

What if Julian had someone else as a parent?

What am I doing so wrong here?

I bought him the weighted vest, the special toilet seat for school, and the balancing seat for circle time. I talked to him about expectations and being kind.

The songs end with clapping and the teacher gives us the green light eat and socialize. I skip off to entertain our one year old while dad takes the lead.

I couldn’t lift my head up to make eye contact with anyone.

Instead I focused on our daughter.

All I could do was look up to smile a tired but happy smile when someone got close to me. I think of grabbing my husband and asking him if he’s okay.

The moment we connect, the teachers stop to give us their support.

“We are really going to miss him. He’s such a smart boy, too. We know he will be back in a few years!”

To that we simply responded with a thank you. We appreciate your patience. And we sincerely do.

We couldn’t have asked for better care givers.

Everyone sat together at the kid’s tables building gingerbread houses, which lasted a whole five minutes for us before Julian trailed off to play alone with the fire trucks. Before heading out, we opened our present from Julian.

An 8X10 canvas with a green Christmas tree on it, decorated with little hand prints, with a gold glittery star on top. I lit up with love, “Hunny do you know how special this is to me?! Because it’s from you!!”

Deep down I wondered, did his teachers make this for us with another child’s hands?

I can’t possibly imagine Julian sitting still long enough to use finger paints let alone enjoy the feeling of the paint. I want so badly to believe Julian sat down with his friends and prepared this gift with love, knowing he would soon gift it to his mommy and daddy.

And like that, the Christmas party came to an end.

We were handed his back pack containing everything he had acquired over the past four months. We asked him to say Merry Christmas to his two teachers and to give them a hug goodbye.

I don’t think he understands that he is leaving pre-k and in a way I think it’s a good thing. All he could think about was getting a big T-Rex.

And although he’s come so far, we still have a ways to go.

I’ll never forget today.

It was another reminder that our child is different.

One who thinks about dinosaurs the moment he opens his eyes. One with endless amounts of energy.

A child who may always be a child, even as he gets bigger and grows out of my lap. But nevertheless, a child we will never give up on.

Today, we did what we always do on extra sad days.

We drive to our favorite pet shop in town and play with puppies until we laugh so much that our cheeks hurt.

We play and pretend to name a puppy that we want to bring home to be his new best friend. Because one day we will. I’m reminded again that because of him I live an extraordinary life.

And because of him, I walk by faith and not by sight. That God gave him to me because I am strong enough to withstand the tides.

God entrusted him to ME; someone who never believed she could. Until I met him. My little Christmas miracle.

So, for mothers (and fathers) out there who need the daily reminder, here it is:

When you get into a tight place and everything goes against you till it seems like you could not hold on a minute longer, never give up then for that is just the place and time that the tide will turn.

Written by, An Anonymous Mother

Finding Cooper’s Voice accepts guest posts from writers who choose to stay anonymous. I do this because so many of these topics are hard to talk about. The writers are worried about being shamed. They are worried about being judged. As a writer and mother I totally get it. But I also understand the importance of telling our stories. And this will ALWAYS be a safe place to do it.

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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.