“Mom, take a breath”
“Mom, take a breath.”
I waited almost 8 years for Jack to have a conversation with me and this is the most common thing he says. The kid is smart and knows the perfect time for a hug, and apparently when I need to take a breath.
Throughout my 11 years of having the title of Mom, I have learned a bit about joy and…heartache, pride…and humility, gratitude…and resentment, plans…and surprises. I recognize these words are antonyms and don’t feel as if they could ever simultaneously exist, but oftentimes they do. The journey of parenthood in general is the hardest job ever and at the same time, the most rewarding.
This concept of embracing the ‘both and’ is new to me as I often land on the scale that sees most things in life are ‘either or’. It’s been quite a while since I sat down and wrote something besides strategic plans for Jack’s Basket, but I’m hoping this message may give someone the feeling they are not alone. Maybe you need to hear what I needed, permission to recognize and express the hard stuff on this journey of raising a child with Down syndrome, at the same time, celebrating it.
I find myself sometimes wrestling with the tension that we publicly share our lives with Jack to bring awareness, that he is #morealikethandifferent, filling up newsfeeds with pictures, facts, and stories on World Down Syndrome Day, glimpses of the day-to-day. How much joy and love he brings our family, truly making each one of us better. But I struggle with how and when to share the parts that are hard on this journey. Granted, I am not a big believer in sharing your deepest thoughts through platforms like social media, as I feel it’s most helpful to talk and share those intimate details and questions first with Jesus, my husband, and then my home team. I do understand the value of sharing our vulnerability which can bring comfort and connection in knowing you’re not alone. Thank you, Brene Brown.
It’s been a struggle to find the balance of being fully transparent about life with a child with a disability (child with a different ability, additional needs, special needs, or whatever you want to call it) and also advocating for my child to be included, provided opportunities, to simply be respected and valued in the world.
It’s not that I have been trying to sugar coat what life is like with Down syndrome, it’s just that when the world views Down syndrome in the ‘either or’ category, describing the genetic condition as bad, a mistake, a defect, a burden and other negative adjectives…it helps explain why I struggled with the ‘both and’ feelings.
Yes, my child needs extra of everything, extra patience, extra practice, extra support, extra appointments, extra people…extra…extra…extra. What makes it hard is that we’ve fully accepted him for who he is with Down syndrome, but much of the world is not so sure. “Great for you…but not for me.”
If you’ve ever wondered why there is so much awareness from our community, read the comment section of any of the recent posts about why people believe Roe vs Wade shouldn’t be overturned. You’ll find my son’s life often mentioned as the “need” for such a “choice”.
Take a breath.
Layers upon layers of this contribute to why we are so scared of Down syndrome. Our truth is that the hardest part of this journey is the misconception of how the world perceives Jack. His life does not have worth. If you’ve never had to defend your child’s life, healthcare, education, question if he could even attend or be eligible because of his diagnosis, possibly pause and consider a different perspective before spewing your opinion onto others.
Much of my child’s life is assumed to be about his extra 21st chromosome. A lot of the exhaustion can be because I am advocating for people to see Jack as a child, son, brother, grandson, classmate, teammate, friend, and many other amazing attributes that don’t include burden, challenges, suffering…fill in the blank. When I go out in public and Jack is not behaving, many assume it’s because he has Down syndrome. Not because he’s a 9-year-old boy, and sometimes kids don’t listen. I have to battle the assumptions of others that life is really difficult, every single day.
We live in a world where it’s encouraged to look around at others and compare and assume others’ lives as if we actually know what it’s like to live theirs. We may even minimize our own situation because someone else has it much harder. I often don’t realize how difficult or hard a season is until I have someone else help me recognize that I’ve been in the trenches for months. Additional diagnoses, appointments, and upcoming surgeries have been our recent reality and Jack can feel it, so he reminds me to take a breath. But let me be clear, I don’t want your pity or judgment, we could use a dose of empathy. We may have grown in knowledge about those that are different than us over the last couple of years, but we may be in need of more understanding of them.
For a diagnosis like Down syndrome, if detected before birth, we are given the “right” that we don’t “have to” do this journey. Whether you want to acknowledge this or not, the world views life only worthy based on one’s assumed contribution to society, and certainly a disability wouldn’t be okay. This thought encourages ableism, which has led to viewing a life like Jack’s as disposable.
Congratulations, you’ve just encouraged the mentality that one being is superior to another, measuring if one is “good” or not, based on a criteria that really isn’t achievable by anyone when you get out the measuring stick. If you need an example of making this more clear, we have given permission to expectant couples to justifiably say, “We want a child, we don’t want that child.” No big deal.
I still often ask why it’s okay to say (in a clinic, written in articles, and hundreds of comments) that it would be better if people with Down syndrome didn’t exist. And all of this is communicated with the assumption that my friends with Down syndrome can’t feel this…or read these statements? For what other people group would this be acceptable? Do your diversity and equity efforts not include those with a disability?
Jack is not a diagnosis that is either-or. Down syndrome is a part of his genetic make-up, not what defines him. We’re up against decades of putting people with his condition in an institution, and today we institutionalize people with our words. Should we be surprised that the population of people with Down syndrome is decreasing because of this?
Please don’t buy into this narrative. Life without Jack would not be better. Our advocacy is a part of this journey because the world has given permission for you to think that way.
Take a breath.
What if Down syndrome is both good and hard? Could that be okay? Would a baby still be welcomed and accepted if I vulnerably shared that the extra sometimes is hard? What if, instead of pity, we recognized a different perspective. That our lives with a child with a difference can be both incredible and exhausting. Should I remind you that life, with or without 47 chromosomes, can simply be just hard?
I’ve humbly learned through parenthood that I am both strong but also in need of help. Isn’t that the formula for community? Isn’t that how life was supposed to be lived?
Take a breath.
What I know for sure is that every tear that has been shed has brought strength, grief has led to acceptance, pain has provided purpose, every conflict has brought clarity, and diagnosis…community.
Wherever you find yourself…hurting or thriving…or both…let’s extend empathy, not pity.
And then, take a breath.
Happy Mother’s Day.
4 Comments
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Marilyn Johnson
What a message! I know that my daughter’s life is hard because of her 19-month-old son’s 47th chromosome, but she wouldn’t trade him for the world. She has her alarm set to ring every day a minute before the time he was born so that she can grab her cell phone and take a photo of him with her and any other family members who may be present at the time. Yes, he has many appointments with multiple therapists on Zoom, but she also has to take him two hours away at least one to three times a month for EEGs, eye appointments, dental and ear appointments. But she’s a tiger mom, very protective, and she loves him passionately. And we all love the little guy dearly — he’s SO extra special to each one of us in the family. Yes, his parents’ life has been hard because of Down Syndrome, but this little boy has been God’s very special blessing to us.
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Victoria
AMEN moma.
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Charissa
“Hurting or thriving…or both” – yes, this is where I’m at. Thank you for affirming that we can be strong and need help at the same time.
Angela
Más empatía es lo que hace falta en el mundo.