Posted by Mishi Methven on Apr 10, 2012
Just like the Doctor's told us 9 1/2 months ago, the tumour growing in Stella's brainstem has slowly and steadily taken away her physical independence. At the end of August she lost the ability to walk or put weight on her legs. By October she couldn't sit up anymore, or roll over by herself. November came and she lost the ability to have bowel movements unassisted. In December, we noticed her arms were not controlled any longer. In January, her speech and eyesight started to decline. In February she lost the strength to hold her head up. In March she started not being able to eat anything but liquids and soft foods. In April she began choking on her own saliva, losing even the ability to swallow her spit. Today she seemed unable to speak at all. Even the 'yes' and 'no' she had managed to squeak out the last several weeks was gone.
But, ironically, while parts of her have disappeared, in other ways she has grown so much. The baby fat cheeks and curly hair have given way to a little girl's thinner face, and hair back in a pony tail. In fact, her hair has gotten to long that when we bathe her and the curls straighten, it reaches down past her shoulders. She has gotten so tall that she is in 4T pants, though she is not yet three years old. When she is sleeping at night, I sometimes play a game where I pretend she isn't sick, that she won't die, and I marvel at how beautiful and perfect she looks. It always reminds me that even though so much of Stella has been taken away, she is still here. And in the last three months especially, she has proven to me time and time again how very present and ready to live life she truly is.
Recently I realized that I sometimes let my own protectiveness of Stella and my own views of what she "should" or "should not" be able to do, colour the activities we do on a daily basis. But Stella keeps challenging my perceptions of her abilities, and with each lesson she teaches me, I can literally feel my heart expanding and collapsing all in the same breath. I keep telling myself to be brave, but I can't always do it. A few weeks ago, I realized that COURAGE is nothing more than tiny pieces of hard-earned grit, all glued together with hope. And with that in mind, I've been able to pay attention to the lessons right in front of me.
For a few months, I told people Stella wasn't up for play dates. I was super-sensitive to the fact that her friends could run around, and talk, and go potty and she couldn't. I never wanted her to compare herself to them and wonder why she couldn't do those things anymore. It broke my heart to remember how she used to run and jump and play, just like them. I didn't want to go somewhere and compare my kid to the other ones, so I tried to shelter her and keep her home with me, where I knew she was safe and not judged. But Stella missed her friends. So, I started doing a few selective play dates. And I quickly learned something. The other kids didn't see Stella as someone who couldn't do the stuff they could do. To them, she was still their friend and they just wanted to play with her. Without begin guided or told by adults, Stella's friends seem to instinctively know what to do to interact with her in meaningful ways. They don't ask to play chase or run around in circles with toy shopping carts. It tuns out, Stella and her friends can play just fine with each other. They can sit on the couch and read books, paint fingernails, get out the Doctor's kit and take turns listening to each other's heartbeats. They can feed dollies, pull the basketball net up to the couch and take turns throwing it. They can go down the slide and "catch" each other at the bottom, or play hide and go seek in the playhouse (Stella hides, and her friend seeks her). Most importantly, irregardless or ability or language, Stella and her friends connect and enjoy each other's company. It is beautiful and heartwarming and stunning in its simplicity.
For a few months, I didn't want to take Stella to the park because I kept thinking that there was nothing she would be able to do there anyway. I didn't want her to feel badly that the other kids were running around. I didn't want to have to deal with the stares from other parents wondering what is "wrong" with my perfect daughter. I didn't want to notice that when you bring your child to the park, and they are a bit different looking, other parents don't engage you in the idle playground chit chat of asking your kid's age, daycare status, name, where you live, etc. I thought I was protecting Stella by staying away from the local playground, but it turns out I was protecting myself. And Stella wanted to go to the park. I was nervous, but I took her. It turns out she CAN go down the slide, I just need to go down with her. It turns out she CAN go on the swings, I just need to sit her on my lap. It turns out I was right that mostly I would just get sideways glances from other parents with no conversation, but I don't care one bit. I'm there to make Stella smile. And when we're swinging weightlessly in the air, she giggles with glee and abandonment and, in that precious moment when the sky gets a little closer to us, nothing else in the world matters.
For a few months, I didn't want to take Stella swimming. I thought the water would bother her sensitive skin, that she would be scared of the crowds. I worried that she would feel overwhelmed and out of control in her body. But two Saturday's ago, my sister asked if she wanted to go swimming and her entire face lit up. She hasn't been swimming since early September, I was surprised she remembered what it is. I kept expecting Stella to change her mind, but she had a huge smile on her face gazing out the window, the entire time we drove to the pool, and when we arrived she seemed to recognize Variety Village where we used to go. She smiled and laughed in the pool and I think the feeling of freedom she experienced made her feel good. We splashed Auntie Heather, we twirled and whirled in the water, we sank a boat. I held her in my arms and she floated weightlessly. It was magic.
For a few months, I didn't want to remind Stella that she used to draw and paint and colour. I thought the fact that she can't see the colours properly, can't communicate which ones she wants to use, can't hold a paintbrush or pen in her hand, would be discouraging for her. I didn't want her to remember that she used to be able to do something--- something she loved--- that now she can't. But two months ago, Stella wanted to paint. I put her in her smock, sat her on my lap, put my hand over hers and helped her dip the paint in and draw the paintbrush across the page. Her head dipped down, and drool smattered on the paper. It made me sad. She kept trying to bite the paintbrush, and I kept admonishing her and reminding her that we don't eat paint or paintbrushes. Then she finally managed to jerk my hand up to her mouth and clamped her teeth onto the paintbrush. She leaned her head down to the paper and started to paint. And she smiled. She had a huge smile. She was proud of herself. I was proud of her, too. Now whenever people come over, she wants to paint with them. Friends, young and old, gamely put paintbrushes in their mouths and let all the colours of the rainbow paint a picture of determination and wonderment.
For a few months, I avoided taking Stella out to our backyard. I didn't want her to see the slide she could climb the ladder to last year, and the playhouse she delighted in running in and out of, slamming the door behind her. I was afraid she would ask me to do something that I knew she couldn't do. I wanted her to forget about the backyard and all the time we used to spend out there. The bushes she picked raspberries from, the lawn she kicked her soccer ball across, the table she sat at when we had family BBQ's. But then I showed her the playhouse three weeks ago from her bedroom window, trying to distract her from something else. She instantly smiled. So I took a deep breath and carried her outside. And she was happy. With some work, she can still sit in her little Muskoka chair in the playhouse. She still laughs each time you close the door and then open it and with great enthusiasm, say "boo!". She doesn't need to climb the ladder up to the slide, she just needs you to put her on top and hold her up while you slide her down. She thinks it's hilarious to watch us throw other items down the slide so she can "catch" them.
The zoo, the farm, walks to Starbucks, visits to friends and family, Easter egg hunts. Stella can do anything she wants. My job right now is not to limit her, to protect her or to project my own fears onto her. I think that I have spent the last 9 1/2 months trying to live each day as if it were Stella's last, but inadvertently I've stifled her somewhat. Because Stella isn't living her life in the same way. She doesn't wake up each morning like I do and wonder if maybe today will be the day she dies. She has no concept of this type of thinking. Stella is living the way she always has--- fearlessly, and with no thoughts of failure whatsoever. She has probably never said to herself, "I can't do that". Why would she? Failure and fear are learned behaviours, and Stella never learnt them. So she decides she wants to do something, and she does it.
I never knew growing pains could hurt so much, and literally stretch and expand all the parts of your mind, body and soul. But to truly grow, you have to be willing to feel the pain, knowing that at the end you will be better for it. I have to let Stella's joy scream across my heart, and drown out the pain I feel for myself because she is making me a better person by showing me that "can't" is not an option.
And so, even though it hurts, we both continue to grow.
"And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom"- Anais Nin
Easter cuddles with Auntie Heather:
Stella can play ball:
Stella can play with her friends:
Stella can go down the slide:
Stella can swim:
Stella can paint: