Friday night in Grapevine, Texas. I unload my books onto the table within the large conference room named the Texas Grande Room.
I see my friend Mardra, she’s such an amazing advocate and a much more talented writer than I can ever imagine to be—I once again feel like I need more hours on the day so I can hang out with her…but then the doors open and immediately we both are inundated with the Rocking Moms of the Down Syndrome Diagnosis Network (DSDN).
Hungry for inspiration and information the 120 moms attending the Second Annual DSDN Retreat purchased every book I brought in the first hour. I was honored to be asked to pose for photos with many of them. They took me back to the days of Sean’s first few years– remembering how raw and hungry I was.
Each mom had a lanyard with their baby’s photo — adorable babies with amazing futures. Mothers with futures that they can’t imagine—but they are dedicated to giving their children all of the best.
Many of these moms are already making differences in their communities. I met two whose children have been models with major stores in print ads.
Others who have found their purpose in administrating the Facebook pages that embrace parents with prenatal diagnosis, parents who have newborns and are navigating the services and learning about this world they’ve been thrust into.
Acceptance, a sense of belonging and a known camaraderie buzzes through the room. Screams and hugs as moms meet each other face to face for the first time–knowing each other’s deepest secrets from the virtual world of their computer screens — to finally embrace each other. The room is full of love and there’s no fear felt at all.
I’m humbled to have been invited to talk to this group of moms who are supporting the future school-age children, future teens and future adults with Down syndrome.
Because of a mom who saw a need to connect new moms this group started a very few years ago, and has grown to over 2,200 worldwide in this short time. Mother of necessity mother of invention-Jenn Jacob has changed the world for the possible lost souls. She has taken them to the mountain and they are climbing to the top together with the support that can’t come from anybody who isn’t wearing the same hiking boots and traveling the same path.
To stand before these women and share the message that their children can change the world is an privilege that I don’t feel worthy of. But a compliment I’ve taken seriously. Because exactly 22 years ago as I was about to deliver my baby–not knowing he would be blessed with an extra chromosome, and not knowing how much my life would change for the better, I’m here to inspire them to see the miracles, when they can’t imagine there are any.
It’s so easy to look back and see the steps that I took, many times blindly, just with faith that God was directing every one of them and tell the stories of how Sean’s mere existence changed the world for students with disabilities who followed him through school and students without disabilities who found their vocations from being Sean’s friend.
And now because of Born this Way, Sean and his fellow castmates are changing the world for all people with Down syndrome in North and Latin America. A platform so mighty I have to focus elsewhere so I don’t become overwhelmed with the responsibility of it all.
My message to these moms:
You Can Change the World, and your child can and will change the world. They have already changed your world and will change the world of the many people that they will encounter in their lives.
You all are still in the land of pee, poo and spit up. You are terrified of wearing white clothing.
But I’m here to tell you it gets better. Better than you can imagine right now. Better than you can dream.
And your child will change the world.
Your child will walk. And then run away from you every chance they get.
Your child will talk, and around age 11 you will wish they would just shut up.
Your child will fall in love. And drive you crazy obsessing on their love interest.
Your child will move out. And you will wonder where all of that time went.
All of the time at therapy appointments and doctor appointments will be so long gone you won’t even remember the name of the therapists. And at this moment you’re horrified that I’m admitting that.
Enjoy every smile. Love every moment your baby is young. You won’t be able to get these days back.
And remember when they finger paint your walls with their poop—t washes off.
And you may not believe it now—but your child is going to make a difference in this world.
Few people have the opportunity to stand out in a crowd. Our kids are outstanding.
You are going to be judged. You are going to be pitied. You are going to feel guilty that you can’t do more. You’re going to worry. Don’t live there. Pull up your big girl panties and dig your way out of the moments of depression –because you don’t want to miss the miracles that are coming your way.
Be grateful for the Down Syndrome Diagnosis Network
Hilary Clinton is the one who said “it takes a village” and she’s was dead on with that.
Don’t parent in isolation and reach out to those you will meet who are trying to do it in isolation.
They are having a harder time than anyone could imagine.
Network locally with parents ahead of you on the journey. That’s how I found out about behavior services, potty training help and respite services.
Don’t be so confident to think you won’t need help. Even the most seasoned mothers still need help.
Hug your kids and hug each other. Nurture your marriages.
And seek out counseling when you need it. Notice I said ‘when’ because in every relationship there is no ‘if’ there is only ‘when.’
You are amazing women.
Let your children try new things. Don’t be afraid they may fail. In some things they will. But failure isn’t fatal.
Remove the word ‘can’t’ from your vocabulary.
When they dream of being an NBA basketball player–don’t tell them they are too short—tell them to go and practice.
Because the exercise they get will be beneficial.
You have dreams that haven’t come true yet.
You have dreams that may never come true.
But you still have them. Let them dream.
Believe in your child regardless of what society has told you to accept.
And expect the best to be provided for them educationally, but please do not email me
the night before your IEP transitioning into kindergarten and expect me to write a 300 page email
to give you a crash course on what you need to know. Start learning now, you have the time now.
From Holly Simon’s book, I Am Who I Am:
“If we all believe that it takes just one person to change the world, we would all live in such greatness.
Don’t’ believe the mountain is too high to climb, don’t’ stay in bed and hide under the covers.
Instead of looking at the top of the mountain and freaking out over it’s magnitude. Just take one step.
Look around, enjoy the sights. Enjoy each baby step up to the top.
Negativity will weigh down your legs, positivity will let you keep going.”
And bring your friends with you to the top. That’s what Jen Jacob did by starting DSDN…she’s
bringing you all to the top of the mountain with her. There’s no race, take your time, but don’t stay in one place.