Mother's Day, 2011.
Hi. My name is Lee Horton-Carter and I have been a member of this congregation for 18 years. I have been asked to talk about the ‘gift of Kezia’ today. You may have seen Greg and I with Kezia as we come into the sanctuary or walking her down to her classroom after story time and you may be able to tell that she is ‘different’ (as we all are) but you probably don’t know much more about how she is different and how she is the same and why she might be a gift to you and me.
Kezia was born with Down Syndrome. That means she has an extra chromosome and she will continue to have that extra chromosome for life. Children with Down Syndrome have a range of abilities and sometimes have health concerns like heart problems and poor immune systems but mostly they learn more slowly than other people. I liked it when I heard one young boy say that his parent had told him that her brain was just a little more 'frazzled' than ours. When I first met Kezia she was 6 years old and she was talking in 3 word sentences and almost toilet trained. She also flapped her hands in front of her face from time to time so I asked Greg if she had some autistic tendencies. He said he didn’t think so. However, a year later Kezia’s abilities declined. She lost her ability to toilet herself, talk as clearly and she began to ‘dangle’ things more. So Kezia was diagnosed with Autistic Spectrum Disorder. Children without Down Syndrome can get Autism too. They can be developing properly until they are toddlers and then your child can disappear behind the veil of autism. I say that because I sometimes find that if I can get past the autism, I can still find Kezia’s spirit with her contagious laugh and smile that lights up a room behind it. So, what’s autism? Autism is a neurological disorder that makes it hard for the person’s brain to make sense of the world. They have ‘sensory processing’ issues, which means that they can be oversensitive or undersensitive to sight, sound, taste, touch or smell. Some of you may remember Kezia and I having three-legged races or playing choo-choo train to get to our seats when we first bought this church. That wasn’t just for fun, although it was fun, it was because Kezia got quite overwhelmed with the acoustics in the sanctuary and she was scared to come in. So she can be oversensitive to sound. Also, when we joined the ‘Buddy Choir’ she would wear ear protectors because we can be loud and silly at Buddy choir practices. However, when it comes to swimming and toboganning, we have to be careful because Kezia can be undersensitive to cold. If we were to open our pool too early in the spring, Kezia would jump right in and Greg or I would have to jump in to save her!! :( And when we go toboganning, I have had to tell her more than once.......”Kezia, if you take your boots and your socks off again and walk in the snow in your bare feet, we’ll have to go home!!”) So when I come up with a way for me to understand what it must be like in Kezia’s inner world, I imagine that it must be like being someone who has a hard time learning things, trying to connect and understand people while living in an internal Las Vegas.
How is this a gift you ask? Well, first of all, I think all children are gifts. There isn’t one of us, or them, that hasn’t sparked learning in the lives of people we touch. We are all like pebbles in a pond and our impact on the world ripples out to others. What I love about Kezia is that, given the issues she has to deal with, I think she is one of the most content human beings on the planet. We all talk about ‘being in the moment’, however, I watch her and she just is 'in the moment’. If she falls and skins her knee, she doesn’t think twice about coming and crying and getting a hug until the pain subsides then she goes off to do something else. And I don’t see her indicate towards the future in a way that says, “I’m not going in there .....that’s where I skinned my knee." Or reflect on the past in a way that says “remember the time when I skinned my knee?” She also doesn't hold on to things or stay stuck in her resentment in order to get extra attention. It was an event that happened and now it’s over.....so she’s let it go. Done deal. Finito. The other thing she does is take people at face value for where they are at. She bobs and weaves with what’s happening and who she’s with. She loves school but if she is too sick to go to school then we just tell her “no school today” and she accepts that. No temper tantrums, no crying fits. She accepts life's changes without a lot of resistance or drama. Buddists state that “suffering is pain plus resistance”. Kezia feels pain , however, she doesn't seem to have the resistance that many of us might have, myself included.
I remember when I first found out that Kezia would be living with us full time. I took her to the Forest Heights pool where we like to go swimming. While we were there I saw a Mom there with her son. He looked to be functioning at a similar level to Kezia. She probably would have had to toilet him, help him with his bathing suit and shower him so they could go swimming. He was really enjoying the swimming and the affection on her face told me that she obviously loved him. However, I noticed that no one was playing with them and people were staring a lot. I remember thinking......that's going to be my life. The only difference is that he was about 50 and she looked to be about 75. So I haven't done as well as Kezia has in terms of not resisting the change. And while it can be boring and isolating to parent Kezia, my resistance hasn't been about her. It has been about “who am I now and how do I envision the life I am having in a way that keeps me connected to my passion for life”. What expectations do I need to let go of and what can I keep that allows me to think “Ok. I can enjoy a life like that.” We all have 'unexpected stuff' that happens in our lives. No one is immune. Scott Peck begins his book “The Road Less Travelled” with the statement... "Life is hard.” Whenever these big changes and transitions happen in life, I look to Kezia as the teacher and try to grieve what I need to let go of and find the joy in what is. That is the resilience that the band Chumbawumba sings about in their song, “I get knocked down but I get up again, No one's ever gonna keep me down.”
She transitioned to living at our house full-time without a hitch although I remember one morning she laid in bed longer than usual and just had a big alligator tear running down her cheek. I asked her if she missed her mom and she said yes and we had a cuddle and when she felt better we went and had breakfast. I have adjusted to the transition now and have felt such incredible gratitude to the people who have reached out to provide support to us in really concrete ways. The Kellers and my sister both lent us their cottages for respite weekends. The respite workers I have found, Joanna and Jill, have been amazing at relating to us and our needs as a family. Joanna even came on holidays with us and it was fantastic to just be able to sleep in again or go for a run and not have to be back in time to get Kezia ready for school. We have met wonderful people through the Buddy Choir and the Down Syndrome society who have provided us with oddles of support regarding summer camps, therapy, support groups and, most recently, helping us to deal with Kezia's transition to high school. And, of course, this congregation has been amazing. What we've gotten from this congregation is a place that we can belong even though we are so different. I don't think I'm going to be finding a 'playgroup' anytime soon that has kids that Kezia can play with. However, here, the Mom's group has included me in their potlucks, Kezia's religious education instructors have made a real effort to learn about Kezia's abilities to see how she can be accommodated in class and Betty has been very clear in teaching me that Kezia is the teacher in this community. We will all end up knowing someone who has Alzheimers or has had a stroke or for some reason can only be related to in concrete ways in the moment and we all need to learn how to relate in this way. So I'm so grateful to have a place that includes us and we can belong because there aren't a lot of people whose lifestyle is similar to ours.
I asked Kezia's brother, Bensen what he thought the 'gift of Kezia' was. First he looked at me and said.....that's a really big question and then, almost without hesitation, he said 'patience'. And it's true. She has taught us all patience. When I first met Bensen and Kezia, Bensen had said that he didn't like the Barney videos that she watched. I thought that was a bit extreme. I mean, they were happy, positive fun videos right? After years and years of it, I don't know how Bensen did it! Now we've moved Kezia on to musical videos and she really loves 'Annie'. And it's only been two years and sometimes I just can't listen to it one more minute. Bensen is my Zen master in that respect.
Greg said that Kezia's gift is that she just 'is'. She's not more or less special than anyone else. She's just her and I love her. I loved that response. We all deserve to be loved and appreciated for the person we just are and not for any special abilities we have. One of the things I enjoy about parenting Kezia with Greg is that he has such a good sense of humour. You may have noticed that Kezia usually likes to dangle a purse of some type on a long string. One time there were several of these laying around in the car before we went into a meeting at the school. Greg distributed them amongst Bensen, myself, Bensen's mom and himself. Then we walked into the meeting dangling our danglies and Greg said “Hi......we're Kezia's family”.
One of Kezia's workers, Jill, said that she loves spending time with Kezia especially if she's depressed “Because she never sees the negative in things. So if I'm feeling sad, I always feel better after I've spent time with her. And it's so hard for her to learn every little thing that I can't help but feel gratitude after I've been with her. She said, “She's my gas when my tank is empty.”
Kezia has introduced me to a whole slew of people who are equally authentic and wonderful. Since September, Kezia and I have been singing with the Buddy Choir. Through this group I have had many wonderful moments but a few stand out above and beyond the others. One of them was when I walked out after practice and was saying goodbye to one of the other members and she scowled at me.....yikes!! When I asked her if she was mad at me she said “You got my name wrong” and when I apologized and explained that I was really sorry and it wasn’t personal , I was really bad at stuff like that she completely let it go and lit up like a Christmas tree and talked about how much she loved performing in the choir. I loved it. I was so impressed with her authenticity and forthrightness and her ease at ‘letting it go’ and moving on to have a nice conversation together. I thought, I don't know how many people would be that authentic and that forgiving that quickly. Another time I remember when we were performing at a church and one of the choir members was going to sing a solo. It was my job to cue him when to walk out in front and sing. When he did, he turned and sang towards me so I had to indicate to him that he had to turn around and face the crowd. During the song, but after he’d finished his part, he turned to me and gave me the biggest grin and two thumbs up. I loved that. In our world of ‘reality TV shows’ and big box stores we are becoming more and more focused on competition, perfection and win-lose and I just loved the sense of self-pride, connection and joy that that simple act represented.
As with all children, Kezia’s gifts to me have included difficulties and opportunities for growth too. One of those growth opportunities has been the struggle I've had with my identity as a parent. When I first met Greg, I took some time to seriously consider whether I would choose his children separate from choosing him. So if he were to die, I was not going to just disappear from their lives too. And I choose them and decided that I would make a good ‘bonus mom’. I figured that the kids had two parents but that I would be a ‘bonus extra’....more resources on the team. I had resisted the term stepmom because of the negative connotations from fairy tales and the implied 'less invested' status. This was my first of many lessons of letting go of control and my ego. It was a great ideal but definitely not grounded in reality. Culturally it was difficult for Bensen, Kezia's brother, to accept having a stepparent and he certainly didn’t want to have to explain what a ‘bonus Mom’ was to his friends so I dropped that descriptor to make it easier on him and began calling myself their ‘stepmom’. My theme song became....”Let it go, let it go, let it go”. At that point I began identifying with adoptive parents. I can remember having conversations with people who are adoptive parents, about bonding with children who have had previous experiences and expectations. Later, my internal parenting identity shifted again and instead of a three-way parenting team, I began to identify with nannies of royal children or black South African servants that do a lot of caretaking of the children in the home, however they do not have parental status. They are people who are highly involved and may have influence but are not main decision makers. Now, since Kezia came to live with us last August, I have been parenting full-time, so things have shifted again. Some people have been generous in wanting to acknowledge my new status and role so they have referred to me as Kezia’s mom. However, this doesn’t feel quite right to me because Kezia still sees her mom even though she lives with us and she wouldn’t understand why she was supposed to call me Mom now. Internally, I guess now..... I relate to the grandparents whose children have died of AIDS, who obtain custody of their grandchildren long after they thought they were beyond the parenting stage. I had made the decision not to have children after I turned 40 and now, 10 years later, I was looking forward to having more time with my friends whose children are entering University and I find myself parenting a 'perma-teeny-toddler'!!
The other ‘gift or challenge’ that I’ve experienced raising Kezia is that when you have a child with special needs, you parent by committee. With teachers, EA’s and bus drivers, speech therapists, occupational therapists, transitional workers, respite workers and parents in two houses there have been the obvious difficulties that happen in groups including gossiping, polarizing of ‘good guys’ and ‘bad guys’, triangulation, which means trying to get people 'on your side' etc. Since Kezia has a very accomodating personality, it is very easy for people to have very different experiences of her and all of it be true. An introvert might say “Ya, Kezia really likes her quiet time” and an extrovert might say “She just loves connecting with people and being really active”. And they would both be right. So Kezia's gift is that everyone involved with her has to learn to listen to each other and talk and problem solve together on her behalf while keeping each other OK and not trying to be 'right'. Recently, she and her Mom have been seeing each other more regularly and Kezia will say “Mommies house tomorrow?”, but as far as I can tell she has never judged or compared her mother, her brother, Greg or me. She doesn't pick ‘winners’ or ‘losers’ or ‘good guys’ or ‘bad guys’. Kezia doesn’t think there is anything wrong with her or you and me. We just are. While we live in a culture that is increasingly critical, she continues to accept the way things are and live authentically in the moment. With the changing parental identity shifts and all the advocacy work that has been involved in raising her, it has taken work to keep myself grounded in knowing who I am, that I’m a good person, a good parent for Kezia and that my perceptions and my experiences are mine and valid even if others have different perceptions and experiences. Again, I look to Kezia as the gift and the teacher, because Kezia would know that experience of not knowing where you stand exactly from the inside with her sensory experiences so I am reminded to deal with the shifting sands of my parental identity and the committee relationships by being mindful and focusing on what I have control of and knowing who I am.
So this is just one person's experience of parenting one child. I don't believe in the paradigm of 'we are the teachers and they learn from us'. We are all learning from each other always. We are all powerful teachers and , I don't know about you but I have a lot to learn and am far from perfect. I always say....if you meet someone who thinks they're perfect.......run!! All of us as parents will have some things about our kids that are easy and some things we find more difficult. For your kids, the things that are difficult may be invisible to the outside person and that might make it harder and more isolating. As parents, it's our job to support our kids about their strengths and weaknesses and get support for ourselves about ours. That way we all get more enjoyment out of the experience. In some ways my experience is vastly different from yours and in some ways not at all. Probably the most salient point when I reflect on who I am as Kezia's parent is.....just lucky to be her parent....that's who.
So for all of you old or young that nurture kids or pets and access that 'mothering' side of yourself, I look forward to hearing your stories and I wish you a HAPPY MOTHER'S DAY.