Funnily enough, three and a half years ago, when we received Jackson's diagnosis, I had never felt more alone.
However, last weekend I traveled to Chicago for the third annual Down Syndrome Diagnosis Network Rockin' Mom Retreat. (We are Rockin' Moms because our kids rock their extra twenty-first chromosome.) I spent the weekend in a hotel with three hundred other moms who had also at some point felt alone due to their child's diagnosis. Do you understand how incredible that is?
To go from being isolated and enveloped by fear to being initiated into the coolest club you never knew you wanted to be a part of...let's just say that when the doctors gave us the list of all the things we might face in the future due to our children's diagnosis, this experience was definitely left off!
One of the focuses of this year's retreat was self-care: what us moms need to do to keep ourselves physically and mentally healthy while on this journey of parenting a child with additional needs.
I don't think it's any surprise that most moms tend to put themselves last and need to make time to take care of themselves, but when you have a child with a disability, there are other stressors added to the mix that make self-care that much more of a necessity.
One of the speakers at the retreat had us take a good hard look at ourselves and challenged us to admit areas of stress in our lives. She gave us warning signs of burnout, and the running joke became "Um, what happens when you have all of the warning signs?"
Due to some stressful circumstances in our life recently (Hurricane Harvey, a flooded house, evacuating said house by boat, and not being able to live in our home for the next couple of months), I knew this retreat was the self-care I needed. I needed to get away from the muck for a few days and to be with the moms who have been my support system for over three years now. I needed to recharge and refocus on the positives.
Another one of our speakers, Rachel Coleman of Signing Time fame, spoke to this shift of focus. As a mom of two daughters who have disabilities, Rachel truly understands what the moms at this retreat experience. She understands the frustrating doctor appointments, the grim diagnoses often painted by medical professionals, the endless therapy sessions, etc. She understands the darkest of hours when these things become too much and you allow yourself to think or say something horrible that you know you don't actually mean.
However, Rachel also understands this: she knows that focusing on those negative things doesn't do anyone any good. So she challenged us to define our lives differently, "to make up our 'why' and to make it something awesome." As one of the songs she sang for us states, "Maybe we won't find easy, but baby, we found the good."
So as I head back to Texas to deal with all the post-Harvey stuff waiting for me there, it would be easy to focus on the extra stressors of our current situation, but I am going to try my hardest to take the retreat lessons to heart. I hope we all can remember to be kind to ourselves and, when there are some hard days, to decide live our lives as "unexpected adventures."
Looking around the room while Rachel sang the song mentioned above, I saw three hundred moms who on a day-to-day basis face some pretty tough things, but we were all crying, nodding, and smiling because we all now know, despite those darn lists the doctors gave us, that when our babies were placed in our arms, we had found "the good."
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