Mothering a Child With A Disability: The Secret Thoughts Part 3

Right now, thousands of mothers and fathers around the globe are doing everything they can to ensure that their child has the best possible chance at surpassing expectations, breaking down stereotypes and fulfilling their beautiful God-given potentials. They are doing physiotherapy, drilling speech language exercises, practicing occupational therapy, attending early learning sessions, participating in music therapy groups, going swimming, investing in toys and tools to nurture their little one’s imaginations, language skills and gross and fine motor skills…and then…they are worrying that it is not. enough.

What if?

What if they are non-verbal? What if they still speak with an impediment? What if they are not kindergarten ready? What if they cannot live without constant care? What if they cannot function in a regular classroom? What if they cannot hold a job? What if they are not as independent as we had hoped?

Ella is two and half and it is preschool registration time. And I worry because when I think about what Jakob was like starting preschool, obviously, there is a big difference. There is a difference because not only is it 7 more months away, but also because Ella is not Jakob and while Jakob has always been very verbally adept, Ella has physical, cognitive and speech delays.
There.
I said it.
I said what therapist don’t even like to say: A statement that for us as parents, never gets easier to say. And if we have to say it, we force ourselves to just swallow hard and choke it out.

We don’t like to admit that our child, despite all of our efforts, might not even function at the low end of normal. We don’t like to admit that they are an exception to the “every child is different and progresses at their own rate” rule. Because medical professionals have told us over and over again the expectations that we should have for our “normal” children so how can we pretend like we aren’t disappointed when our “not-so-normal” child has not met those milestones.

But here is the kicker: Ella is only two and half and that gap between her development and the development of her peers is only going to widen…exponentially.

Okay. Stop.
I want to be honest in this space. I want to share these thoughts because I want other mothers with children with disabilities to know they are not alone, and I don’t want everybody else to think it is always gumdrops and lollipops, because it’s not. Sometimes, it sucks and your secret thoughts get the best of you. But then you breath, look at your beautiful child and refocus perspective. I don’t want to leave you here so I am inserting below, the “refocused perspective” and the part I choose to dwell on. It was a guest post I did over at this Mama last week. Just in case you missed it….

I remember vividly , the first days of Ella’s life. I remember holding my baby girl in the quiet moments with uncertainty in my heart, celebrating that God had given me a little girl but mourning the ideals I dreamt about as a mother. You see Ella, was born with Trisomy21 or as it is more commonly known, Down Syndrome, but they were unable to confirm this until she was almost three weeks old, so for the first days of her life, it was like a little secret that her and I shared because a momma knows when she looks in her baby’s face and something is not quite right… and honestly…. I was heartbroken. I grieved the tainted images I had in my head of ballet recitals, highschool graduation, a wedding, grandchildren, the list goes on. I feared what I did not know and the number 40 kept flashing in neon lights: life expectancy.

Everyday however, Ella reminds me what a fool I was. The tears I shed were for what I did not know, and now that I know, I am put to shame. Because to be honest, raising Ella is not a life of mourning but of pure joy. For two and a half years she has brought a smile to my face and warmth to my heart. Her unadulterated perception of the world is a breath of fresh air. Most days, I forget about her inabilities and instead am captivated by her ability to encourage everyone she meets. Most days, she requires the same love, provision and discipline as her older brother as she processes the world around her. She has learned to walk, to feed herself, to feed her babies and while we are a bit more versed in medical terminology and therapeutic methods, the extraordinary is only fraction of our rather ordinary, daily lives.

Even when I have subconsciously placed limitations on my daughter she always makes sure to set me straight. One of my favourite things to do with my older son, Jakob, is bake. It is something beautiful that we can do together while I teach the life lesson of how to follow a recipe, count and measure. For some reason, I had not done this with Ella. Quite frankly, I didn’t think she would be able to do it. I didn’t think she was ready and I wondered if she would ever be able to help me like Jakob does. To be honest, I didn’t even think she would be able to handle standing on a chair at the counter. If you saw her move, you would realize how ridiculous these thoughts were. So yesterday, when I asked her if she would want to help me make biscuits she confidently said, “Yah!”

She was an all-star! She stirred the ingredients, put the butter and milk in and helped cut out heart-shaped scones for tea. She was a great little helper and she put me to shame. She reminded me that she is a perfectly normal little two year old and the only thing wrong with her is the stereotypes and limitations that society, and I, myself place on her.

If I were I to sum up what it is like to parent a child with a disability I would say it is altered-expectations. We have been taught by “professionals” what to expect by 6 month or two years or by the time they finish highschool, but it does not mean we have to subscribe to them and it does not mean that they are right. That is beauty of individuals with Down Syndrome, or Autism, or Cystic Fibrosis: they take what the world is so certain of and remind us that God is the creator, and he knew what he was doing. They are not mistakes, they are not unwanted, they are children of God. Sure, there are realities that we will have to face that others may not but mothering a child with a disability is more the same than different, as are the children we care for.