This World Down Syndrome Day, I wanted to visually share the challenges we have faced navigating Kindgerten, in spite of the fact that this very capable little girl is ready to learn and soar. Look for an in depth blog post coming soon.
You can help by calling your senators and letting them know that children deserve access to an education, and in order to gain that access our government has to be willing to pay home health aides and personal care school aides a fair wage.
I will never stop fighting for you. You are perfect just as you are. You are perceptive. It has to be frustrating to have people constantly underestimate you. You have an intuition about people, places, and nature. When you assert yourself in your way, I see you. You deserve friends, that understand you and accept you, exactly as you are. Beautiful flaws and all.
Advocacy is exhausting. I feel like I’ve spent the last six months fighting, some battles big, and others small. Why though? Why is there always a fight?
This journey is hard on a Mom. I know my child better than anyone. I can look at Sienna and know what she wants, needs, and feels. A mother’s intuition is her guiding light. It’s a force inside me, that I couldn’t argue with even if I tried.
This year, more than ever, it’s becoming evident that Sienna isn’t the one who needs to change. Things shouldn’t be this hard. The world should be more flexible, kind, and accepting.
So, I will keep suiting up for battle. I will wipe the tears from my eyes, the sweat from my brow, and the dust from my boots and I will fight.
Some people say moms in this community are strong, in a complementary way. I hear it all the time. You are so strong they say, but I’m not. I try to get the tears out in the shower and keep it together. I break down with my friends and I lie to the outside world. At some point in the last couple months, hearing you’re so strong felt like a farce. I am not strong. I am hardened. I am hardened by the endless battle that is advocacy. But I will keep going and maybe someday a mom who follows in my footsteps won’t have to be hardened. Maybe, just maybe, the world will bend and stretch into a place that has room for everyone.
The night of Sienna’s birth, I remember watching Jason sleep and staring into space, a million thoughts rushing through my head. No one knew yet. It was our family’s information to process and digest. I am ashamed of the worries that raced through my mind. I look back on those anxious thoughts and realize just how far we have come.
What thoughts raced through my mind?
Can I do this? Will we still be able to go out for weekly Friday dinners? Will we be able to travel? Can I do this? Will we have to leave the city for a different school district? Can we afford to raise a child with Down syndrome? Can we do this? Will Haley’s life be affected negatively? Will she be pushed out of the spotlight? How will this affect our marriage? Can I do this? Is this my fault? I don’t think I can do this.
Five years later, I not only know I can do this, I am grateful for the ride and our tour guide. Sienna has taken me on a journey of self discovery. Sharing my truth and our story has given me a greater purpose. Sometimes, I question if I share too much. Then I remember reading blogs that same night those questions raced through my mind. I remember the reassurance that came from reading other mother’s stories.
I laugh at those questions now. We do everything we did before Sienna came into our lives. That doesn’t mean things haven’t changed. The changes have made our family better. They have brought us closer. We have slowed down. We place more value on our precious time together. Life isn’t a race and there is no competition. Our society places too much value on being perfect and doing things a certain way. Sienna does things her own way. We have found that we like her way. We love seeing the world from her viewpoint, and as she steers our course, we continue to see things in a beautiful light.
During this journey of self discovery, I have become an advocate. I have learned that life’s greatest joy comes from helping others. I have learned there are people willing to help us, and it’s okay to accept that help. Unfortunately, until something directly affects you, you don’t know what you don’t know.
I didn’t know I needed to become more brave. Sienna has made me push myself out of my comfort zone. I am so grateful for that push, because I don’t think I would have gotten there on my own. If she weren’t in our lives, I would have missed out on so much life has to offer. I would still be seeing things through my self centered lens. Sharing my truth has connected me to some of the greatest human truths – patience, hope, connection, wonder, and finally self discovery.
I have grown. I spend time helping others in the community. I advocate for her rights. I don’t take health care for granted. I take things as they come. I celebrate everything. I laugh more. She makes us all laugh more. I have learned the value of what’s really important. This October, I wanted to express my gratitude for our path. I am grateful to Sienna for giving me a new lens. She has enriched our lives in countless ways. Her presence in my life has liberated me in a way only love can.