I used to blog a lot. As a young mother, I blogged about milkshakes being spilled on the kitchen floor. Then there was the time I fixed the washer and saved myself from paying a $100 service fee. I started blogging in 2006. I blogged when my mother died. I shared inspiration and gained inspiration from other bloggers. I spilled my mother heart, I bragged about triumphs. I found community in the blogger world.
Then from 2013-2014 we lost 3 pregnancies. The last baby was a little boy. We lost him at 16+ weeks pregnant. He had Down syndrome and complications with his growth robbed us of the chance to ever hold him. Before I could even fully grieve we had the beautiful opportunity fall from heaven to adopt our daughter. Baby J. She too had Down syndrome, and some physical complications. Several surgeries later, therapy the past 2 years and six kids total here (on earth) to raise, and an angel boy looking out for us and life was pretty full. No wonder I didn't find any time to write about our awesome adventures the past couple years.
Since bringing home our daughter and the world of pure JOY that Down syndrome brings into a home, I have had dozens of friends inbox, message or share pictures and posts of families raising their JOYFUL babies too. It seems now that Down syndrome is everywhere. But it is more likely that I am AWARE, my eyes are open, I can SEE the beauty of these special little and not so little (but still JOYFULLY little at heart) people.
I recently was visiting a blog that is called something like:
There is nothing Down about it.
This took me back to being pregnant with our little Boy, David Tayten (Tayten means beautiful JOY) and two experiences I had with loved ones before I lost him. The first was my uncle. I called him on the East Coast to tell him about David and also that he had Down syndrome and we didn't know what to expect. He quickly said, "Well I know you two will do an amazing job raising him. Knowing you two he will probably grow up to be the first Down syndrome President of the United States." This made me smile and I remember thinking that moment, my child will never be stopped by me. I will encourage the sky as their limit. Sure, they won't get everything they want. But really who does? The second conversation occurred over Facebook. We announced that we had learned we were having a boy and that he had Down syndrome. We petitioned prayers for his health. We were anxious, excited and felt blessed. Because we knew what many may not yet know, that it is a gift to have one of these special little souls in your family. I posted some cute picture of multi-cultural children lined up in angel wings, and diapers, many nationalities, all with Down syndrome in common. My friend said, "Knowing you, this boy will be born with Up syndrome."
That moment warmed my heart. Sure, I was scared. Sure, I didn't know what to expect. Sure, the health challenges that might be ahead frightened me as a mother. Sure, I cried for things that might be lost, like my boy might not marry, or he might have heart failure, leukemia, or not even survive birth...which ultimately he didn't. But in that moment of tender and generous words from an uncle and a friend I realized what I was capable of. I was capable of encouraging greatness. And greatness I have come now, not to believe, but to KNOW...is found in the little things.
I still mourn the loss of that little boy. Sweet nurses, took tiny hand and foot prints for me when his heart failed in utero and he didn't survive. I can't explain it, but in those 16 weeks he filled me with so much hope, happiness, and JOY. And I know he was part of my swift healing so that literally weeks after his loss, our hearts were open to the miracle, that soon became our daughter through adoption.
And our life is an UP syndrome. Her gifts are many, just like my other kids. Her tears are wet, just like my other kids. Her laughs are loud, her wants are many, her smile is huge, her hugs are tight...just like...well almost like my other kids. She hugs a little tighter. She kisses a little more. She is so compassionate. If I am coughing from a cold, she is at my side rubbing my arm. If I am sad, she has her arms around my neck. She has a sixth sense. She sees hurt, her eyes are wide open. She is aware of others. She is a walking miracle. And she is greatness. And our life was a little Upside down when we lost our boy. And a little topsy terby when we got our little girl. But there is no DOWN here... It is UP UP UP! And like they say in the movie up... Adventure is out there and we are embracing it.