We Walk the Line

There is a line that exists, and all mothers of children with special needs walk it. It is not my favorite part of this journey. Advocacy versus inclusion. It’s a push and pull, an ever going battle in my mind. It’s the uncertainty that is parenthood. We never know if we are doing the right thing, but we forge ahead.

The push is the piece that wills me to discuss advocacy, to prove to society that Sienna has worth and that Down syndrome has a place in this world. I want people to know that Down syndrome is nothing like I thought. It’s a gift, a blessing, it’s Sienna.

Then, there’s the pull, constantly telling me to treat her the same as her typically developing peers. Place no limitations on her, and treat her as you would treat any other child. If you baby her, she will not succeed. If you draw attention to her diagnosis, you are doing her a disservice.

So, which is it?

When you write a blog and post as often as I do on social media, one thing is certain. Opinions are abundant.

“If you want Sienna to be treated like everyone else, why do you constantly draw attention to Down syndrome?”

“You don’t have to defend her, you know. She’s just a baby.”

“Don’t you think advocacy has taken over your life? Is that really what’s best for Sienna? For Haley? For your marriage?”

These are actual quotes from people in my life whom I love. They all want what’s best for me, for my family, and my children. If they question it, do you know how many times a day I question it? Constantly.

I am in the midst of a WDSD school tour teaching children about Down syndrome, carting Sienna along with me to show children that God creates beauty in all of us, that we all have unique talents and challenges. I am drawing attention to her.

The reality is this. Down syndrome is here to stay. I am not ashamed of it. Yes, it is a big part of our lives. I have a tattoo on my arm that signifies how proud I am of my daughter and our family, so obviously, I am in it for life. Sienna’s diagnosis is written on her face, and it will be for the rest of her life. Sometimes, I am relieved that her face reveals her challenges. I see mothers with children on the spectrum. How do they explain that their child is not misbehaving, without pointing out their diagnosis? It’s a constant battle.

Motherhood is insecurity at all times. You make decisions on behalf of these tiny, incapable, humans. You hope that you are doing the right thing, but you don’t get to see the future. If you screw up, their happiness and place in this world are at risk, and all of that lands on you. It’s pressure. It’s stress. It’s hardship. It’s also beauty, fulfillment, and reward. All of these feelings coexist in my world, at this moment in time.

The truth is, I have no idea if I am doing the right thing. Does anyone? Aren’t we all just faking it? All I know is that it feels right. It feels right to visit schools and share Sienna. It feels right to use my voice to tell society how much color Sienna brings to our world. It feels right to talk about Down syndrome and her challenges, because they are my challenges too. I might change my mind some day. I reserve that right. For now, this is where we are.

If you don’t use your voice to tell your story, will anyone ever hear it? Will anyone ever learn from it? Your story is who you are, and our story is Down syndrome. Our story is girl power. Our story is miscarriages and infertility. Our story is heartbreak, adventure, and redemption. Thank you for reading about this life we got. You make this mom feel like she is doing something worthwhile.

 

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The Gift of You

To my dearest Sienna on your second birthday,

I wish I could say that the day you were born was one of the happiest days of my life, but sadly, it was quite the opposite. That has nothing to do with you, and everything to do with me. You see, your mommy was clueless.

When they told us you had Down syndrome, it was a big shock. As they placed you back in my arms, I knew I felt the love that every mother feels for her baby. You were beautiful. The fierceness of the love I felt for you was overwhelming. Our bond was instantaneous, but I was also terrified. What I didn’t know about you or your diagnosis was that we had been given a gift. You were going to teach us about unconditional love, joy in unexpected places, and the tenacity to move forward.

I am so embarrassed about what I thought it meant for us on the day you were born. I pictured a life spent taking care of an invalid. I pictured our vacations and dinners out, ripped away from us. I pictured a life of difficulty. I pictured your sister, who at that point was the center of my world, forever changed and taken away from the spotlight she lived in and adored. Everything I pictured was wrong. I am putting all of this out there in case there is some other mom, laying in a hospital bed right now, wondering if her life is ending. It’s not.

Our life has been changed by you and your diagnosis, but they are welcome changes. We do everything we did, before you came into our lives. We even do some new things, thanks to you. You make vacations better with your smiles, and sass. Oh the sass! Dinners spent out are loud and full of humor, as your dad and I watch your sister and you misbehave. You yell, you laugh, and you throw things (sometimes at her). Your sister and you have a love story that melts my heart each day. You also fight with each other, like all sisters do. Haley has made the spotlight bigger, and you both revel in it. Haley protects you, and it’s a role that she has chosen on her own. Truthfully, I think you might be protecting her soon. You are a feisty little girl.

Today is your birthday, and two years later, I am grateful. I would not change one thing about you. You are tenacious. Every day, I watch you struggle to stand, to walk, and move around. Your muscle tone holds you back from physically moving, but it doesn’t slow down your spirit. I know you will be walking soon enough, but for now, you get where you want to go, through will power. You are a sassy little girl. I thought I knew what sass was with Haley, but Sienna my love, you take it to a whole new level. It’s hard not to laugh when you throw things, when you scream no, and when you slap your sister or me. You also have an incredible heart already. Whenever your sister is upset, you start to cry right alongside her. You are a daredevil. When Dada throws you in the air, your laughter is infectious. You love to go on rides, and it would appear that we have another thrill seeker on our hands. You do not openly give affection away. You make people earn it, and sometimes you make them work really hard (sorry Aunt Kristy). You are a lover of music. You dance and sing all day long. Our house is full of laughter each and every day.

My Sienna Mae, I could and do write a blog on everything I didn’t know, before you were born. I didn’t know that your adult counterparts with Down syndrome were doing such amazing things, like lobbying for their rights, teaching Zumba classes, starring in reality shows, writing books, owning businesses, living independently, and getting married. They are enriching the lives of their friends, family, and the community. Before you came along, I didn’t know what the word advocate meant. I didn’t know about the friendships I would make in this wonderful community. We are grateful that you have introduced us to such amazing people.

We celebrate more, since having you in our lives. We appreciate the little things. When you pulled yourself up to stand, we jumped for joy. When you used your walker for the first time, I cried. I don’t know what the future holds for all of us, but I know that having you in our lives has made us better people. We have more empathy for others. We choose kindness. We have become more political and we have learned how much we will rely on Medicaid during your life. We will always advocate and fight for your rights and others like you. This has made us better citizens. We love bigger. We have learned that love comes in all shapes, sizes, and abilities. We have learned that emotional intelligence is just as important as being smart. We ask for help more, which has introduced us to some wonderful people. We have better friendships, because of you.

On this day, I want to say thank you. Thank you my beautiful, smart, sassy, baby girl, for the gift of you. I am sorry that I didn’t know what a gift you were when you were born, but I will spend the rest of my life telling everyone else what I didn’t know. I love you and everything that makes you, you.

 

 

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Get on the Boat

I’m not writing this post to be political. I’m writing it, because this is a parenting blog and what is going on right now appeals to me as a mother.

The first movie I ever cried watching as a child was Dumbo. The scene where his mother and him have to embrace through bars was, in my 5 year old mind, barbaric and the worst thing any child should have to endure. Now as a mom, I cry even harder during that scene. I’m on the other side of the tragedy and I find it even more heartbreaking. Children belong with their parents.

The news disgusts me from every angle. What has become of this nation? What has happened to our humanity? Put your politics aside and look at the pain on that 2 year old child’s face as her mother is ripped away from her. Where is that baby right now? What kind of pain is she facing? Do you know that the caretakers at these tender care facilities are not allowed to offer comfort through affection? They are not allowed to hold these children as they cry and convulse from the emotional pain they’re enduring. They’ve been ripped from their mommies and no one will hug them. I can’t help but think of Haley. She needs affection. She would shut down completely. These kids aren’t being told where their parents are and if they’ll see them again. We don’t have anything to tell them because we don’t know. We still don’t have a plan in place to reunite these families. How? Why?

I want everyone to just stop. Stop. Stop with the politics. Can we please put the bullshit aside? Stop pointing fingers about who created this problem. Stop sharing memes that oversimplify this issue. Stop with the speculation on what the hell Melania’s message on her jacket means. It’s just a jacket. It doesn’t matter. These babies matter. These parents matter. They are people. Be compassionate. Choose kindness.

When 9/11 happened, so many stories emerged about every day people turned heroes. There were so many strangers sacrificing their lives to help people. I had never in my life been so proud to be an American. I want that America back, the one where people showed compassion to each other.

There is so much hate and vitriol. When I say my heart was broken last week, I am not exaggerating. When someone goes on live television and says “womp womp” over a ten year old with Down syndrome being separated from her mother, we’ve really fallen from grace. This is the world I’m raising my daughters in. I think about the adults with Down syndrome watching that clip, wondering if the rest of the world is really this heartless. It scares me. Will Sienna face this in the future? Haley happened to catch a clip of the news last week and asked me why those little kids can’t be with their moms and dads. I didn’t know what to say. I still don’t know.

We can’t use a broad brush to paint this picture. Yes, there are bad people trying to cross the border. There are also families seeking asylum. I know many things have led to our current circumstances and I don’t care to debate those things. I don’t care to point fingers and spew hatred. It’s a vicious cycle and it gets us nowhere. I’m actually battling this with my 5 year old at the moment. Rather than dealing with a problem, she wants to assign blame. Last week, we had a breakthrough. I asked her to clean up a mess. Her friends had been over and they contributed to the mess. She spent so much time breaking down who did what, who made what mess. Because she’s 5. I listened to her all while cleaning up her mess. When I was done, she was still complaining. I turned to her and said, “Do you see all the time you just wasted by trying to blame someone for a mess rather than cleaning it up? Mom cleaned it up while you complained and wasted time and energy. We clean up after our friends and they clean up after us. It’s part of being a good friend, neighbor, and citizen.” Something did click. I’m not saying she still doesn’t whine and complain but now I say to her, are you wasting time right now complaining instead of fixing what’s wrong?

It isn’t illegal to seek asylum. For those of you that are Christians, you’ll recall that Mary and Joseph traveled to seek asylum. King Herod intended to kill the infants in Jerusalem, due to his paranoia. So, Jesus, Mary, and Joseph were illegal themselves when they entered Egypt. They wanted to protect Jesus from harm and went to seek out safety for themselves and him.

These families are seeking safety in this country. They are coming from some of the most unimaginable and horrific circumstances. There is a reason they’re risking everything to bring their children to this country. When the water is safer than land, you put your child on a boat.

I don’t know the answer to immigration laws in this country. I’m not going to pretend that I do. I’m not going to waste time pointing to past administrations from both parties that led us to where we currently are. The fact is….we are here. We are all watching children suffer in front of our eyes, missing their parents. Let’s stop wasting time discussing how this mess was made. Let’s start cleaning up, TOGETHER. Won’t it feel good to turn the TV on and see a child reunited with their family? That’s my dream. That’s my prayer every night before I go to bed.
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