This past weekend I ventured WAY outside of my comfort zone and got on a plane to Phoenix, Arizona by myself to spend the weekend with 400 other Rockin' Moms. "What is a Rockin' Mom?", you may ask. A Rockin' Mom is a mother of a child who is Rockin' an extra chromosome, just like Matthew. It was a retreat put on by the Down syndrome Diagnosis Network, an amazing organization that provides support to new parents of kiddos with Down syndrome as well as providing information to medical providers to help make the diagnosis experience better. The work they do is life-changing for so many families, and I am so grateful to have this organization in my life.
The goal of the retreat is for moms to connect, inspire and recharge. I can safely say that all three of those goals were met with flying colors.
(Mommas who had their babies in 2017)
I can't even describe the feeling of being in a ballroom full of 400 other moms who all had their lives change over night by hearing the words "Your child has Down syndrome." It gives me goose bumps just to write that. There is no doubt that we all live different lives. We came from all over the United States, and even a few from Canada and the UK. We might not have much else in common, but that bond of having a child who has Down syndrome is a strong one.
(Oklahoma Mommas representing)
The lineup of speakers definitely left me feeling inspired. On our first night, we were welcomed with dinner and a keynote address by Bethany Van Delft. She spoke about her experience receiving a birth diagnosis and the range of emotions she felt afterwards and the importance of telling our story. She shared her story on The Moth, which you can listen to here. I had not heard it before, and it is SO different than our story, but I believe her candidness about her real feelings is admirable. She is a comedian by trade, so there were many laughs that night, as well as a few tears. Her story is definitely worth a listen to gain some perspective into what many special needs parents feel. She definitely left me feeling inspired to continue sharing my story, and Matthew's story, because you never know when your story may change somebody's life.
The conference is generally geared toward moms of kids 0-3, but there were moms who have older kids too. We were able to listen to a panel of "veteran moms" whose kiddos are older- teenagers or adults. I LOVE hearing stories from those parents and kiddos who are paving the way for Matthew's future. The parents who have pushed for inclusive education to become the norm as opposed to the exception. The kids who have proved that people who have Down syndrome are capable of succeeding in school, going to college, getting jobs, being independent, even getting married. Matthew will have so many opportunities because of those who have gone before us, and I love to soak up all of their wisdom.
The moms on the panel answered questions by sharing stories of their experiences along the way. My favorite story was told by a mom whose son told her that he wanted to get a job. She thought she would have to reach out to a special needs agency and see how to go about it all. She noticed a little while later that he wasn't at home and his bike was missing and she panicked a little- she had no idea where he had gone. Long story short, he had gone to Publix to get himself a job and had succeeded. He didn't need her to act as his agent or help him figure it all out. He decided he wanted a job and he went out and got it. There were many other wonderful stories that warmed my heart and left me feeling full of hope for the future.
The final speaker was Brian Donovan. Some of you may remember him as Rusty on 90210, but that was a little bit before my time (just barely). His little sister, Kelly, had Down syndrome. He spent seven years making a documentary about their story and how he helped to make her dream of performing before a sell-out crowd in Hollywood come true. You can view Kelly's Hollywood on Showtime, and I hope to watch it soon. He believes that everyone should be given the chance to pursue their dreams, whatever they may be. I pulled out my notebook and pen to write down his words when he said "You are more than the labels and limitations placed on you by society." I am pretty sure that every mom in that room is fighting to prove that their child is more than what society thinks of when they hear "Down syndrome." We are all fighting to change the narrative. He didn't leave a dry eye in the room when he shared the following (it was written in the 70s, so some of the language used is definitely a bit outdated):
The Special Mother by Erma Bombeck
This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."
"Forrest, Marjorie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."
Finally He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles, "No matter, I can fix that. This one is perfect -she has just enough selfishness."
The angel gasps - "Selfishness? Is that a virtue?"
God nods, "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't realize it yet, but she is to be envied. She will never take for granted a "spoken word".
She will never consider a "step" ordinary.
When her child says "Mummy" for the first time, she will be present at a miracle, and will know it!"
"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My Work as surely as if she is here by my side".
"And what about her Patron saint?" asks the angel, his pen poised in mid-air. God smiles, "A mirror will suffice."
When I told you before that I had to think about what my favorite part of the retreat was, I'm not going to lie, coming in a close second place was the lazy river. The entire retreat was held at the JW Marriott Desert Ridge Resort & Spa. The resort was beautiful, and the facilities for the conference were amazing, but their water features were definitely the highlight for me. I spent almost all of my free time by the pool or in the lazy river. There are few things more relaxing than floating around in an inner tube with the hot desert sun above and cool water below. Throw in uninterrupted adult conversation in there and it is pretty hard to beat! This definitely fulfilled the "recharge" portion of the retreat for me!
I learned so much. I feel refreshed. I met so many wonderful women. I feel like I am not alone in this journey. It was a truly wonderful experience, one I don't think I will ever forget. All that being said, I could not wait to get home and hug my babies (and my husband too). Now it is back to reality: toddler tantrums, non-sleeping babies, therapies, chauffeuring kids all over town. But when I get stressed out or overwhelmed, I will try to remember the bonds I made and the support I felt. I will remember the phrase that was repeated over and over again, "You've got this, and we've got you."
This trip was made possible because of all of my wonderful friends and family who donated to my fundraiser for DSDN. Last spring, I raised over $5,000 from 57 different donors for DSDN! All of those donations allowed me to go to the retreat with all expenses paid. I thought about all of those who helped me get there every single day. I am so thankful for the outpouring of love and support that has been showered upon us. I really wish that I could put my feelings of gratitude into better words, but there truly are no words that do it justice.
I got to meet two of the ladies from The Lucky Few Podcast! Heather Avis wrote the book The Lucky Few and Mercedes Lara who I follow on Instagram (hooray4sunny). It was a total fan girl moment!
Some other 2017 Mommas (3 others from Tulsa)
