Right before Christmas last year, a war began brewing in a closed group for writers of a very popular disability website. And as is typical, when there is a bad thing going, good will always come out of it. Well, much good came out of this war-like conversation: a wonderful bond and connection between parents who felt strongly about being advocates for their disabled and sick children, who advocate mainly through their powerful words. Some of the parents and I began private messaging during this time, and decided to form a closed group where we could all support one another without any fear of criticism. This group is flourishing and helping and supporting, and encouraging those parents to continue writing despite what other opinions are floating out there. And those same parents and I decided to start a blog where we could publish all parents' stories. We named it
SNAP: Special Needs
Advocates and Parents. Now you know the history behind SNAP, and I strongly believe that without that little battle before Christmas, none of this would have happened.
And in the early days of our new group, I met some amazing new parents who had all been writing for that popular website. We got to know each other, and I must say, I feel like we are all family now. One parent in particular would share her blog posts and published articles and I always felt touched by them--her writing spoke to me. Maxine, from England, is a mother of a child with Down's syndrome named Rukai, and she blogs at
Down In Front, Please. She also has red hair, which is something I of course admire. But more than that, I admired her boldness, her concise yet descriptive language, the literary tone she weaved through every piece, every sentence. Her words move me--to action, to pondering, to betterment.
I continued to be drawn to Maxine's words, and asked if she would like to collaborate with me somehow. After about a week of brainstorming, we decided to write letters to each other, letters that would dig below the surface of the issues we face every day. Letters that show how similar we are as parents, despite how different our children's diagnoses are. And so, "Transatlantic Tuesdays: Letters from Across the Pond" was born.
This was her
letter and introduction to the project. Before you continue reading, click that link. Her words are powerful and thought-provoking, to be sure. They respond to an article of mine published here.
Have you read both links? Good. You are ready to read my reply to her fabulous question posed at the end of the letter:
"Now if you're up for it, how about telling me what exactly is buried in that ice?"
Dear Maxine,
I'm so elated that you read my recent article. You say it seemed like the tip of the iceberg, and to be completely honest, it really was. With only 500 words to pen it was nearly impossible to delve into the depths of the despair that was in that singular moment of my motherhood. So yes, I chopped and chiseled my words down to what I thought were the most meaningful to share, because that's what I do! But what were in those "teardrops of hopelessness" that drifted into the wind?
Well, I'll tell you one thing. Growing up in a family with very typical children, I never imagined for one second that I'd have a child with a disability. It was something that other people dealt with, but not what I would deal with. Does anyone ever consider it might happen to them? Imagine what it would be like, or how they would feel? I never did, and motherhood came at a young age for me. I fully expected to have a normal, healthy child, because that's what I knew growing up.
However, there were certain instances that I think prepared me for this life. I remember going to a facility for handicapped and disabled children and young adults when I was about 14 years old. Each of us was assigned a person from the facility to care for while we were there. I will never forget the face of the young man I pushed around that day in his wheelchair. His dark brown hair, his permanent smile, his body movements when he was excited. The employees tried to teach us how to interact with these severely handicapped individuals. I did my best at such a young age. I talked to him and knew he was listening. I patted his shoulder and tried looking into his eyes.
At the end of the visit, we all gathered in a large room and an employee led us in singing songs together. Watching these disabled people respond to the music was overpowering. They swayed, they smiled, they laughed. Even now, when I think of that moment, I get goosebumps. I remember he grabbed my hand as we all stood in a circle. I felt my soul connect with his. Human touch is a powerful thing. I'm so glad I got to experience this as a young person. No doubt our youth leaders were divinely inspired.
Flash forward to the year 2004. I'm a new mom to a cute redhead. I've just been told by a neighbor that she might have autism. I'd done everything I could to push that thought out of my mind. She was too young to be diagnosed, anyway. I told myself that she would grow out of these behaviors. I'd researched autism and concluded that she didn't have enough of the symptoms. But my fears were always close to the surface. Fear is a potent emotion...
Because she wasn't walking by her 18-month checkup, her pediatrician was concerned. He gave me the contact information for an early intervention group in town. I had no idea what this meant, but thought I'd follow my doctor's advice. We were moving out of state soon anyway, so it wouldn't be a long commitment.
I arrived at the parent/child group for early intervention. All the parents were doing crafts with their kids at little tables. I looked around the room at the children and saw visible handicaps. Visible syndromes. Noticeable behaviors and delays. I didn't even stop to notice the smiles on the parent's faces. Their loving and genuine concern for their children. All I could see was that these children were different. Her pediatrician had placed MY CHILD in this same category. Why did he do this? Why did he think my child was different like these children?
I wanted to leave that room soon after I arrived. In fact, I don't really remember how long I stayed. I probably made up some excuse and snuck out of there, clutching my precious child to my chest.
Why did I feel this way? How could I feel such a strong connection to a handicapped boy as a teenage girl, but feel the complete opposite about my own child? I obviously understood the impact that a precious soul could have on my own--why couldn't I feel that with my own child?
Here's why--here's what's buried under that ice, that is usually chiseled away conveniently as to not offend or demean. My daughter is MINE, and I wanted her to be perfect, not broken somehow. Perfect, not damaged or needing repair. Perfect so I wouldn't have to worry. Perfect so I could keep all the same hopes every parent has for their children. Perfect so I wouldn't have to be broken, too. Oh, how wrong I was, and how strongly fear had a grip on my perception at the time...
But life is not about perfection. It's about being broken, over and over again, and finding the strength to sweep up those pieces and put them together. And when those pieces are glued together, we might look at ourselves and see those cracks, those visible scars, and think, why can't it just be easier? Ease does not lead to growth, only hard things do.
Back in 2004, I didn't know what the future held. I didn't know that my daughter eventually would be diagnosed with autism. I didn't know I would have a son with a frightening blood disorder, or another son with a birth defect. I didn't know how broken I would feel as a mother. But what I do know, now, is that I've always been able to gather up the pieces and make myself whole again. There are probably many cracks beneath the surface, but on the outside, to the world, I try to appear strong. It's all I can do without completely falling apart, which I do often, in quiet moments to myself.
And I know now that being broken doesn't mean anything at all. We are all broken and damaged. We all need repairs. We will always have worries, and our dreams will not always come true. But that doesn't mean we can't make something beautiful of our lives despite the brokenness. It's okay to be broken, because it means we are being shaped and formed into who were were meant to become, much like an ice sculpture has to be broken and chipped away to create something beautiful.
So, Maxine, that's what's buried under the ice, what you might find below the tip of the giant iceberg of my life to my very special children. And now I have a question for you:
How have you turned the negatives thrown at you regarding your son's diagnosis into positives?
Your friend across the pond,
Kera
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