“What’s really surprising about being different sometimes are the similarities…the many ways in which we aren’t different at all.” Caroline, Halle’s Mom
How many kids do you have and who in your family is the child with special needs, & how long have you lived in Westport? I have three girls. Marinna is 6, Halle is 5 and Camille is 2. Halle has Down syndrome.
What is the biggest challenge in taking care of a child with special needs to date? This is a tough one! With our social bunny, Halle, I think it’s keeping up with her social calendar. She is such a bright social girl, and if she had it her way she’d have 3 play dates on a given day after a full day at school before soccer and finish it all off with a swim – with friends! Seriously though, it may be that along with her pure determination, which was a hard one to learn to manage! Learning to run her down and keep her out of the street/off the stage/out of your car/off of your lap… wasn’t easy.. she’s speedy! And if you know us, you know this has been very real and I’ve had to learn to accept being in the moment/on the stage and in the spotlight.. Halles mom is how I’m mostly known.
What do you enjoy most about having a chid with special needs? The thing I enjoy most about having a child with special needs is being blown away by her over and over again. Her special needs pale in comparison to her special gifts! Halle is one of the most compassionate children you’ll ever meet… and her devotion to learning is magical. She stuns everyone daily with her new words, tricks, and the outpouring of support she shows to her classmates and friends.
How has your own life been impacted after having a child with special needs? How has it not? I have never been one for the spotlight…and then I became Halles mom… and a lot of us know what that meant… now I’m Halle’s mom! And our family has the sweetest understanding of what special truly means. Having Halle as a part of our clan has made life so extra sweet…and fast and busy and incredible.
How has having a child with special needs impacted your other children? Having Halle as a sibling has brought boundless joy to our family. Halle is 17 months younger than Marinna and the bond they share is incredible. Halle being a part of Marinna’s life has given Marinna such a gift. Not only are they friends, but growing up with a sibling who is “different,” Marinna has some deep understandings that differences don’t make us actually different. And in reality, we are all different anyway. The compassion and support she shows her is wonderful, and Marinna has this for others to a heart melting degree. That said, when it all boils down to it… Halle always won the battles=) Someone else may have started the wrestling matches when they were younger, but Halle always finished them! And Halle is the best big sister to Camille! It’s insanely cute to watch her play games, show Camille how to do it, support Camille and verbally guide her at this point as well.
What helps you relax and de-stress? Dog walks at the beach, workout class with Mo and friends at the Saugatuck Rowing Club… any 80’s music with a nearby dance floor… and laughing with friends…oh, and maybe a sun reflex appointment whenever possible too! And if none of that works, just have a sudden cardiac arrest… that comes with becoming bionic and a week in bed! (Note: Caroline – Halle’s mom – went into Sudden Cardiac Arrest at a gym class a little over 4 years ago, and lives to tell the story! She is also currently organizing a non-profit to raise funds to replace our local AEDs. Keep an eye out for more here from this bionic woman!)
What is the best piece of advice you have received on this journey of uncharted waters?
The best piece of advice was the outcome of bad advice. Years ago, someone told me to pray for the best, and deal with what I got when I was pregnant. I am so forever grateful that I was able to welcome Halle as herself when she was born rather than grieving her diagnosis at that time. Having found out her diagnosis through confirming tests in advance, it was a gift to be able to process the sadness any diagnosis comes along with prior to her birth, and to have been able to embrace Halle with joy and love when she arrived. Also, I have learned that we often get what we need even if we don’t know we need it yet. Because we needed Halle, and that is for sure❣️
How are you involved in your local special needs community? Not enough, and I’d love to be more involved in the future. For now, I’m involved with Halle through her school and activities. And I serve her support staff… And as part of her traveling show. For wherever we go, you can’t miss us and will likely get to watch quite the show. This has changed recently to a remarkable degree and we may be a bit confusing as we are much more civilized in our entrances and exits. For those who have seen us on the stage at the Levitt, you likely know Halle likes to have a turn on the drums on stage… after all we are a sharing family!
If there is 1 thing you hope people can take away from your story what would it be?
A take away? Hmmm…I suppose that the real blessing is yet to come when you are faced with digesting any diagnosis. As with anything we are not yet familiar with it can seem overwhelming and confusing. Once all of the newness passes, the beauty of your child and your experience with your child, is exceptional and very special. What’s really surprising about being different sometimes are the similarities….the many places we aren’t different at all.