Written by: Katie J.
I am acutely aware that a mother in specific stages of life will find my page and read words I have placed here. I know that what brings a lot of Mothers to my feed are feelings of sadness & broken hearts. My wish is that this will always be a place of hope, a place that always reflects truthfully on things I’ve faced.
So, when a mother writes to me, saying she has looked at every photo of Kenzie, and read every word I’ve said about Down syndrome, and watched every video she can... I know (because I was once her) that she is looking for a reason to want a life with Down syndrome in it.
How incredible this turn of events truly is. One day, about 4 years ago, I wrote to the only two mothers I knew who had kids with Down syndrome. I found them online, and I found them while I was completely broken and grieving the daughter I would never have. I told both of these women that I knew I wanted my children (I was pregnant with twins!) but I wasn’t sure how to accept or move forward with the knowledge that one of my twins would be different, not like the other. I was broken inside, and they both gave me words of kindness, love, knowledge and hope.
I think I can safely say that not one of us sat on the floor playing with dolls and said “I hope I have a daughter, and I hope she has special needs. I hope she has a speech delay and developmental delay, and I hope I get to worry about her well being for the rest of my life. That sounds perfect!!”
I know I didn’t. I bet you didn’t. And I know that’s exactly what someone is thinking when they hear Down syndrome for the first time.
I know that when a parent receives a DS diagnosis, no matter what they learned growing up or how much kindness they have in their heart, hearing that your child will be different than what you dreamed in your heart is HARD. Changing your mindset without even meeting that child is harder, and when someone reaches out saying they don’t know if they could do it - I think that’s brave.
Yesterday, I had the chance to speak to a mom, and here is what I told her.
The doctor can tell you your child will have Down syndrome, but she can’t tell you what that life might look like. She can throw some health concerns at you and hand you a poem, but none of that truly shows you what a life with DS actually is. Your doctor can’t say if your child will get married at 30, or hit by a car at 16, or be the most popular in school, or suffer a great loss in life, or lose a limb, or have a broken heart. Because those would be guarantees, and no one gets those in life. No one.
When we learned Kenzie had DS, I assumed we were being given a life sentence of hardship and struggle, I mean, that’s basically what the doctor told us. Not in a million years did I think I would be THANKFUL to have my eyes opened to a new kind of wonderful.
So please, look through my photos, read my words, watch videos of the sassiest, happiest, bossiest girl in town.
I hope you fall in love.
