A Cage of Metal and Tears
Stella is nearing the 16-month mark of being diagnosed with DIPG. She continues to decline physically, but also continues to live, sticking her tongue out everyday to let us know what it is she’s up for. We’ve been to Riverdale Farm, out for dinner, out for ice cream, to the Farmer’s Market and to Kimbourne Drop-In Centre this month. If Stella sticks her tongue out, we go. If she asks for it, she gets it. We sense that we have been given a second chance with Stella since her “near death” in late August, and we are running with it.
We have seen changes in the last few weeks with our girl. Stella is physically a rag doll now. She is the physical nightmare I imagined months ago when I realized what this tumor was capable of. She has no independent control of her body left whatsoever…essentially she is a quadripalegic. Some days she can’t even open her mouth to eat. Her left eye now rolls to the side. She can’t hold any part of her body up or move anything at all. It’s hard to help her do and see things. When we go to the farm, one person has to hold her body up and the other has to hold her head up and try to move it in a way that her eyes (which naturally look down and left), can see the animals. When she paints, I have to drape her limp body over my lap and then hold her head up with one hand and use the other one to do hand-over-hand with the paintbrush. It’s physically exhausting, but worth every second of the struggle. It is almost impossible for her to smile anymore—the effort is too much, but her eyes tell us how she is feeling. We don’t know how much longer we will be able to have her physically with us, but we’ve decided to plan for the longer term and take each day as it goes.
A couple of weeks ago, as part of our longer-term plan, Aimee and I began mulling over the idea of getting a wheelchair for Stella to help her sit more upright. Our rationale was that with the proper support and ability to sit, she might be able to participate more in activities like dinner at the table, or playing at Kimbourne. So, last week, we had a salesman come a couple of options for us to test out with Stella. I think the salespeople try to make the idea of a wheelchair seem less frightening by referring to it as a “special needs stroller”, but when you see her in it, a bunch of padded bars holding up her head and a bib under her chest, it becomes apparent that this is a wheelchair in every sense of the word.
I was caught completely off-guard by the way I felt when I first saw her sitting there. The shock was almost too much for me, and though I feigned excitement and happiness at seeing Stella sitting upright again after nearly a year of having to lay down, inside my heart was breaking into a million sharp little pieces, scarring the inside of my chest. She looks so…so…so sick in her wheelchair. So frail. So helpless. I hate it. I hate the metal cage with wheels on it that holds her body in an unnatural position, trapping her in a web of buckles and straps, a veritable scarlet letter that screams “different” with a capital “D” at the top of its lungs.
The truth is, we can’t afford the “Special Needs Stroller”. It’s $10,000 and although the Ontario Government will give up to 75% to families towards the cost of a wheelchair, Stella doesn’t qualify for the grant from the Government because she is palliative. That’s right. If you’re dying, the Government won’t pay for your wheelchair. Why should they? The person using it is just going to die anyway, what a waste of money, right? Hearing that news from the salesman was a slap in the face, but I was also secretly relieved. I don’t want to see her in a wheelchair. It’s too hard for me. I will do anything for Stella, even torture myself further by putting her in that damn chair, but if I don’t have to, I’m thankful.
Over the last few months, I’ve often gotten frustrated with people who make comments about Stella out in public. The whispers I’ve heard about how she’s asleep, when she’s not. The questions about, “what’s wrong with her?” The comments and tongue clicking that occurs when people mutter that she’s too big to be in a stroller, and too old to be drinking from a bottle. For the most part, I try not to let it bother me. These people are strangers, they mean nothing to me, and I owe them no explanation (although once in a while when I’m feeling particularly irritated I look them in the eye and say with calmness, “actually she has a brain tumor”, in the hopes of making them feel badly about their judgments). So, before we got it, I was partially excited about the wheelchair because I felt like it would draw a clear picture for people of the fact that Stella is not tired, or lazy, or spoiled, but that she is sick and needs a little extra help.
The salesman who came agreed to let Aimee and I trial a wheelchair for a week so we could decide if we liked it or not—though we have no intention of actually buying it. Aimee understands that I am having trouble with the wheelchair, but she reminded me that if it was the best thing for Stella, we need to give her the opportunity to use it. So, we agreed to try it out and I loaded it into the back of our minivan chattering excitedly to Stella about her special new chair.
I was so upset the first time I took her out in public with it. We went to a big Fall Festival in a local park where there was face painting, horseback riding, food, music, etc. I gathered all my courage, placed her into the wheelchair, did up all the straps and tightened the headrest, then began to push Stella around the park, amidst huge groups of children running around, adults standing in groups talking and laughing, and the swirl of autumn leaves raining down on us.
Already feeling conspicuous, I soon learned that far from being something that cut down on looks, stares and whispers, the wheelchair invited even more of them. I felt every eye on me when I pushed her around. I lost count of the amount of pitying looks I got from other parents as I tried to manouever Stella’s wheelchair around. I can stand a lot, but not pity. People who feel sorry for me underestimate how much joy and purpose Stella brings to our lives.
Not quite sure what to do, I decided to take Stella to the craft counter where we could paint pumpkins together. It was packed with kids and parents painting pumpkins, and I was surprised to notice that other than a whole slew of stares, no one paid any attention to us at all. As in— no one moved aside to let us near the crafts, or offered to help gather supplies for us. We were effectively shut out of the craft table. I ended up having to push Stella away from the main craft table and brought some art supplies over to her. But she didn’t get to sit at the table with the other kids, and she didn’t get to pick from all the paint colours like the other kids, and she didn’t get the people running the table complimenting her on her pumpkin and offering suggestions and assistance. Luckily she didn’t notice, but I sure did. Similarly, over at the face painting table a group of volunteers was busy giving children faces full of beautifully coloured butterflies with sparkles that spread from their cheeks to foreheads, to chins. I stood in line with Stella but when it was our turn, the volunteer took one look at Stella in her chair and said to me, “I’ll just put a tiny butterfly on her cheek for you” and took a plain green paint stick and did a tiny outline of a butterfly on one cheek. I felt embarrassed. I should have gotten angry and stood up for Stella, demanding she get a big, sparkly butterfly like the other kids, but I felt like I’d been punched in the gut and slinked away. I pushed Stella over to the pony rides and we watched the other kids ride ponies. Then we wandered over to the bouncy castle. I asked the people at the castle if I could bring Stella in if I held her and just sat in a corner and let the other kids bounce us around. They said no, it was too dangerous.
It was then that I came to the heartbreaking realization that my daughter and her wheelchair were being treated like a disabled person— and disabled people in this community were treated as lesser human beings.
How sad and sickening.
The more I stared at Stella sitting there in her wheelchair, the more I couldn’t hold back the tears. As she sat watching the Bluegrass Band, I began to cry. My dad rubbed my back and I just turned to him with tears running down my cheeks and said simply, “I’m sad”. He nodded. He knew. He understood. He told me to go for a little walk to regroup, so I did but I didn’t feel any better when I got back.
I have tried my hardest to live every part of this journey with as much strength and dignity as I possibly can, but that wheelchair very nearly broke me. The stark contrast of the girl Stella once was to the one she now is, is too much to have staring at me in the face so blatantly day after day. When Stella is laying in my arms on the couch, or sleeping in her stroller, I can still see my daughter and can find a way to keep going, to keep smiling, to keep helping her live the best life ever day after day. But for some reason, that wheelchair cuts too deep. I’ve asked Stella if she likes her new stroller, and she sticks her tongue out yes, but I don’t think it’s made our life any better or more bearable. In fact, I can’t wait for it to go away. At least Aimee and I agree that she doesn’t look overly comfortable in it. Maybe sitting upright increases the pressure in her head due to the hydrocephelus. Maybe it puts too much pressure on her tailbone. Maybe it makes it harder to see us because she faces away. Or maybe we just can’t tell if it is good for her or not because she has been so tired the last few days. Personally, I think that the girl who once would never sit still for a moment, hates the restraints that criss cross her body because she knows they act as a barrier to her bursting free.
I think wheelchairs are wonderful for many people. I know that they offer independence and mobility and empowerment. A few months ago, it probably would have been amazing for her. But not now. Not at this point.
As we near the end of our journey with Stella, I have decided that she doesn’t belong in a cage of metal and restraints that brings sadness and pain to me, and whispers and separation to her. Stella belongs in a place I can kiss her and whisper “I love you” whenever I want. Stella deserves to be free. Instead of a canvas seat strung on two metal bars, I want her to sit on a cushion made of my warm legs. Instead of buckles and belts, I want her to be held in place by my strong arms. Instead of a seat that forces her to face away from me, I want her to see me looking at her with love and pride. Instead of a contraption that keeps her further away with its focus on cold, grey distance, I want her close by and surrounded with nothing but love and warmth. From now until forever I want to be her chair. Holding her close, supporting her in everything she needs, and keeping her safe.
Stella and her new wheels:
Painting at Kimbourne:
Ice cream trip: