January 24, 2018

To My Son with Down Syndrome On Your First Day Of School

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This Down syndrome blog post is a letter to my son with Down syndrome on his first day of starting public preschool- Down syndrome public preschool.

Dear Anderson,

Today is your first day of school. It’s a big day for any kid. It’s an even bigger day for you. Because you have Down syndrome, your day came sooner. You are only three-years-old and will be going to public school five days a week; something your big sister has yet to do. But I think you need it, I think you want it, so I’m letting go.

I spent most of yesterday worrying. I wasn’t sure if you’d understand getting on the school bus so early in the morning. I talked to you about it, I showed you pictures, we sang The Wheels on the Bus a dozen times. Before you went to bed, you surprised me when you said, “ ‘cool buh”. You said it- you knew!

The test came when the big flashing yellow bus pulled up to our home. I thought you would be scared; hesitant at least. But like you so often do, you showed me my fears were unfounded as you practically leaped from my arms and up those big brown stairs.

I watched you buckle in your tiny frame and wave goodbye like it was no big deal. But to me—it was monumental. I gasped for air as you drove away. Fat tears streamed down my face, but they didn’t fall for the reason I would have guessed. I wasn’t scared for you, I was proud of you.

I am so proud of you.

Today is the first of many days in your school career. I know some things will be more difficult for you than the other kids sitting in circle time. But my love, if you tackle those things with the same gumption you showed today on your very first day, it will be enough. 

You are enough.

I believe your future is bright. Mine is certainly brighter because you are in it.

So, here’s what I want you to know: try your best, always. Keep proving my fears wrong and show others who have preconceived notions of what you are, just who you are. Learn as much as you can and please don’t stop teaching me along the way.

Read more school stories: Inclusion is the Reason My Son Started Walkingand Why I’m Letting Go of my Child with Down Syndrome

January 8, 2018

To my Son with Down Syndrome on Your Third Birthday

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Dear Anderson,

Your father and I spent the morning of your third birthday crying on the hallway floor. I know this sounds confusing, so let me explain the words that didn’t need to be spoken between us that morning.

We were crying, because of how deeply you have changed who we are in the last three years. We were crying because these years have often been hard. We were crying because we are so completely in love with you and all that you are.

Dear son, I’m crying as I write this now. You bring out the best in me, the best in us, the best in those around you.

Yes, your Down syndrome diagnosis makes things harder for us at times, harder for you at times. I won’t deny that fact like I used to. The Sesame Street shirt you wore at your party read, “Easy As 1,2,3”, but getting to where you are, where we are, has not been easy. But it has been good.

I’ve realized that an easy life does not mean a good life. A good life is one full of love and purpose. You have given us both.

My love for you has fierceness beyond what I can humanly describe. I love you when you’re trying with all your might to complete an obstacle course in physical therapy, I love your mischievous grin you have when you’re doing something you’re not supposed to, which is often, I love you when you give kisses to total strangers, I love you when you bring your baby brother toys, I love your infectious excitement that exudes from your veins every single day, I love that you have an empathy that surpasses most adults at the age of three.

You’re about to start public school. Things are getting more real. You aren’t a baby anymore. Advocating will have to be more than from behind a computer screen. I’m ready to fight for you. I will always fight for you.

When people say you don’t belong, I will be in your corner as you show them how wrong they are. When people say you or others with Down syndrome shouldn’t exist, I will share your life with them. Whatever battle comes your way, I will be there to fight for you until you can fight for yourself. But no matter how grown, how capable you become, I will always be a fellow soldier by your side.

I love everything about you. Thank you for being you. Thank you, God, for giving me this adventure I never knew I wanted. Thank you, God.

November 29, 2017

My Son with Down Syndrome has a Higher Intelligence

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We’ve been through a lot of big life things in the last year. They are the kind of hardships we will look back on, look at each other, and ask, “How did we ever get through?”

When you’ve been through a lot of big stuff, you can kind of forget about how hard the little stuff can be at times—the missed naps, the bored child, the burnt dinner. Those mishaps that interrupt what we hope the day will bring.

We had one of those life mishaps this past week on Thanksgiving. My husband went down in the morning with a bad stomach bug. So, I did my typical parenting move—I got kids out of the house. I put number two down for a nap and took one and three to Sea World.

Only, somewhere in between feeding the sea lions and Shamu’s Christmas show, I started to not feel so great myself.

When we got home—it was confirmed. My husband and I were sick at the same time. The worry that keeps moms up at night was happening to us.

After a really painful night, I got enough strength to walk down stairs to fill my water bottle. My toddler, Anderson, greeted me. He came waddling over with his arms stretched out high. I thought he wanted me to pick him up, but instead he just hugged my neck. He patted my shoulders and kissed my head.

I went back up stairs, closing the baby gate behind me; a move that would have normally resulted in a sad, frustrated boy. But this time, it didn’t. He held onto the gate, looked at me as I walked up stairs and gave me what I thought was a reassuring smile.

He knew. He knew I was sick. He knew I couldn’t really be “mummm” that day. He knew I needed comfort. He knew.

I remember a special education teacher reaching out to me when I first found out Anderson had Down syndrome. She told me that her students with Down syndrome often had a “higher intelligence”.

She described it as an intuition, an emotional knowing.

Anderson is almost three. As we approach his third birthday, I’m starting to feel uneasy about the gap between him and his peers. He has few full words, mostly word approximations. Although he moves really fast, he can’t run. He can’t jump, despite his best efforts.

If I’m being honest, the last two don’t really bother me.

The hardest thing for me when we got Anderson’s diagnosis was the fact that he’d be living with an intellectual disability. I worried about him socially, but also about what he’d be able to do in school; what he’d be able to do after school.

I equated intelligence with success. I used to hold intelligence in the highest esteem.

But Anderson has changed me. More than wanting my children to be successful, I want them to be good people. In fact, if they turn into people who put other’s first, advocate for justice, protect the weak and comfort the broken, that is what I will hold in the highest regard.

Take one look on social media and it’s clear people with Down syndrome are breaking barriers. They are going to college, competing in pageants and running businesses. Of course, I hope for this kind of success for my son.

However, if this isn’t how his life unfolds, but he uses this gift, this extra dose of empathy, to make a difference in people’s lives- that will be enough.

I realize now, the teacher said “higher intelligence” because she really meant of higher importance. Perhaps she also meant that it is a gift from above.

 

Midweek Moral Wrap-up:

As I was reflecting on this, it made me think about what I really value. We are quick to praise those who achieve worldly greatness. But are we as quick to admire the qualities that matter most? I know I have to constantly keep this in check. Don’t get me wrong- we will have high expectations for Anderson. As his parents, it’s our job to provide him the tools to do his best. I hope he will be able to live independently, and I think he will. But when I start feeling anxious about his milestones, his progress, I need to remember what is most important.

 

 

 

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