Elyse has come a long way. Only two short holiday seasons ago, we were wondering if she would make it out of the hospital in time for Christmas.
Now, she goes to preschool where she plays independently and has friends. Her long hair has to be tied back into pigtails, and she's learned how to move around and climb, as well as communicate with us through basic sign.
Once she figured out how to climb onto the dog's bed, it didn't take long for her to manoeuvre herself up onto our treadmill. The look on her face when she sits up there is priceless: beaming proud. Elyse has learned to feel a sense of accomplishment because of her own hard work, but also because of the acknowledgement she has received from the family and friends that surround her.
We couldn't ask for a more loving family, or a more supportive group of peers to help raise our children up.
But, that's not really what I wanted to write about today.
Today's post is about my short comings as a parent, and arguably as a human being. I'm not being self-depricating, just introspective. Today's post is about me shifting uncomfortably in my seat watching my youngest daughter who didn't quite fit in. It's about me acknowledging that while I frequently dole out unsolicited parenting advice and support to others, I am still much in need of some therapy myself. I am a positive person, and I can usually pass the negative thoughts aside, but reality hurts sometimes.
I took the girls on another outing in the community this morning. This time to our local community centre for a family story time. The overall experience was a positive one, but there were moments that cloud my thoughts with doubt. My shortcomings present themselves in the form of worry and fear. I know, to a certain extent, every parent goes through having concerns for their children, but it feels so different with Ariel compared to Elyse. Ariel has always 'fit in'. I have always felt confident in my internal beliefs, and self-talk that, "Ariel will be okay." As an aside, I do know better than to fully think that any of us is ever really safe or exempt from harm's way - anything can happen. I read an entire memoir about a mother's 12-year-old boy being swept away from her in a freak flooding accident in their neighbourhood where the creek used to only trickle by. Children who lead perfectly typical lives can develop schizophrenia in their teenage years, irrevocably changing who they are; and I'm in the middle of my friend's memoir, 'Mind the Gap' (Jonathon McMurray) where a car accident at 22 years old forever changes his life. He was ejected from a car going 120km/hour and landed head first on the centre median of the highway, and lived to tell about it. His entire memory and knowledge of the world was wiped clean. Again, anything can happen.
As I watched Elyse at story time today, I couldn't help but worry about her. She wasn't able to keep up with the group, or rather, she was doing her own thing. In that moment, I judged my child, thinking, "she is not okay", which really means, "she is not like the rest who are okay." At a few points, yes, I felt concerned for her immediate safety, as the children danced around her, but that was not what I meant when I thought about her being "okay". Many of my unfounded worries drifted towards the future.
The librarian had the kids follow her in a simple rhyme about snowflakes. There were about 25 little snowflakes, all reaching their hands up to the sky, their twinkling snowflake fingers shining bright, ready to fall to the ground; while, centrally positioned within the group, Elyse's arms and pudgy fingers laid placidly by her side, her gaze focused steadily ahead on the teacher as if in a zoned-out stare down with her - who will blink first? I couldn't stop the thoughts from coming about how this is how her life begins as 'apart' from others. Do I think she can reach her arms up and make her fingers twinkle like a snowflake about to fall - absolutely, but it's a matter of timing. At home, Elyse would have likely done this activity with me no problem; though she often participates in a group setting by simply watching (not unlike her sister for a time). So, either Elyse chose not to participate today, which is possible, or she was unable to keep up with the pace of the class, because all of the actions I knew she understood. While the teacher moved onto the next song, it is also probable Elyse was still processing the actions the other kids had just performed. Processing, right down to the cellular level, happens more slowly in children with Down syndrome, which affects memory, as well as reaction time. Elyse's cellular activity is physically moving more slowly than ours. How this delay manifests itself varies from person to person. And so, I worry. How can I not?
I worry about the day I drop Elyse off for her first day of school; exactly one year after her big sister makes her mark: Who will look out for her then? Who will make sure she eats? How will she be able to express what she wants and needs? Who will do up her winter coat, and make sure she stays safe? Most importantly: who will make my little snowflake shine?
I can only hope that her teachers will see more than a little girl in pig tails, with arms hanging loosely down by her sides. I hope they will see the spark that I usually do, when I look through my own eyes, instead of imagining what others may see. I can only hope Elyse will learn to walk by the time we are ready to make that jump to school, and find her voice in time to run around the playground, and say, "you're it!" But if she doesn't, that's okay too.
I won't give up on you Elyse. Your faults are not your own: they are mine.
Elyse was perfectly content twirling around on the carpet, and being social with all the other kids. She didn't push anyone or step on someone or stand in anyone's way. Elyse was, in fact, a model citizen today in how she treated others. When I think back to library time with 2-year-old Ariel, I have to laugh in a way because Ariel used to try and run out of the room, while I was forced to chase after her, juggling an infant. She gave me a lot of grief, to say the least. Elyse chose not to participate today, whether because she could or couldn't, but that certainly doesn't mean that she won't. She will. When she is ready. On her terms.
And with time, these differences that once seemed noticeable to me, will no longer cease to matter. I will no longer question Elyse's strengths, challenges, and differences - I will just accept them. After all, she is still learning, and so am I.
Elyse with her friend Katie at Preschool
Katie loves to play with hair, and Elyse is the only one who lets her do it
Chaotic visit with Grandma & Grandad to see the trains at RBG
Elyse & Oreo tuckered out over the holidays on a long drive to Peterborough
Elyse is a big girl who sits right up to the table now with her own plate, sans tray. Ariel was overly- thrilled at being able to sit beside her sister.
The first time Elyse climbed up onto the treadmill (we all laughed and howled over what a "little stinker"she is, climbing up there)
...and one of the other many times
Elyse with all of her buddies at HDSA's Parent Networking Group this week.
Funny Arielisms as of late:
1) "You'll never find the _____ (insert object here) NOW! HAHAHA!", and "Swiper, no swiping! Swiper, no swiping! Swiper, Nooo swiping!" (these are actually Dora-isms)
2) "Mommmm, I want some cinderella cheese!" (she meant mozzarella cheese, of course)
3) And just today (after spinning around in circles for 5 minutes), in her high pitched voice, "Mom, this house is very tippy!" Things are often "tippy" when she spins around.
4) and my new favourite Arielism of all....gasp:
When sitting in the tub together, she remarked, "Look mom! My toes are all 'rumplely'!" And I quote.
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