The Beauty in Barriers
My lens was created by three enchanting wigwams.
Two of them, born in my tummy.
One of them, born from my soul.
I knew I was going to adore being a mom.
I knew adding children to our world was going to change everything.
I knew, 10 years ago, that I was starting a life I was intended to live. But from the get-go, almost nothing was how I had envisioned it would be.
We started out adopting our first baby cakes. I was 24, Jake, my husband was 31.
A few days after she came home to us, we noticed that her reactions to her world were telling us something wasn’t right.
At a year and a half old, after months of doctor appointments and assessments, she was formally diagnosed with Fetal Alcohol Spectrum Disorder, Low Muscle Tone and Sensory Processing Disorder (later around 3, she was diagnosed with Autism as well).
At first, the labels scared the hell out of us. We were overwhelmed with the countless uncertainties and potential outcomes these diagnosis brought to her. To our family.
It wasn’t long after I settled into my big feelings, that I decided sitting in this cloud of yuck was not just lame, but it was also sending our darling daughter a message that she was broken. It was then, that day, that I decided to stop seeing labels and diagnoses as dead ends. I began to teach myself how a label is simply a road map and the hard stuff that diagnoses bring, are just barriers.
Once I changed that lens, it became crystal clear that we were given the children we were meant to parent. My kids were constructed exactly the way this world needed them to be. It was my job, as their mom, not to change or mourn their barriers or their quirks. My job, as their mama, was to teach them the tools and give them the supports they needed to learn how to navigate their barriers-- allowing them space to value their true authentic selves and become the person, they were intended to become.
When we brought our second daughter into this world, a seed of accepting and meeting my children just as they were intended to be, was planted again. She came with her own road map of labels and diagnoses: EOE (Eosinophilic Esophagitis), Asthma, Allergies, Sensory Processing Disorder, ADHD.
It was a daily choice of practice to look at my children, look at the behaviors, the sicknesses, the doctor appointments, the fear--and to sit with them all. Just sit still and breathe into our new normal.
When our third baby came into this world I was ready for another hurricane of challenges--what we got was a typically developing, super healthy baby boy. He had no major brain or body barrier bringing us to doctors and therapy offices--and the girls noticed. They asked why he didn’t have barriers like they did.
I explained to them that every child has rocks in their rivers, that just being a child puts rocks in their rivers. I told them that some people are born with extra challenges while others will acquire more of them with time. But the important thing is that we honor our barriers and treasure them. That we never fear or run from them, but we spend time discovering all the gifts that they bring to us and we hug the parts that ache because of them.
Growing humans is a hard gig. It is confusing and scary and complex. Growing one with additional difficulties can truly overwhelm even the most well-intended parents. I am one of them. Having a game plan to choose courage and leave the cloud of yuck, will not only change your experience growing your humans, it will also change the trajectory of your human’s life.
Here is mine:
1. Choose courage.
2. Sit still in the anxiety and worry and sadness--learn what they feel like.
3. Give my worry buddy a big hug.
4. Identify the barriers' hard bits and their benefits.
5. Create supports for the barrier (therapies [for child and parent(s)], parenting changes, doctors, classes, medicines, experts, research, etc.)
6. Educate and empower babe about their barriers, the hard bits and the benefits. Teach them that these are reasons, not excuses. Encourage and excite them to have an active role in their support plan.
7. Find places and spaces in the community that allows the good bits about their barriers to soar.
8. Repeat steps 1 - 3, just about every day.