A few months ago Angela Tobin asked if I wouldn't mind speaking for the Bus Stop Club. I do not think I am a good public speaker-I am great and more-than-fine (and humble) in my classroom-but in front of other people who I have one-shot to make an impression?? I don't think I am good at first impressions. But because it was Angela and because it was for the Bus Stop Club I did it. I drove through ice and snow and I spoke and cried in front of people who had supported the Bus Stop Club for the past year. I made them cry too, so I think I did okay and I think that maybe they know a little more of what their financial support means to their Adopted Nonprofit group, the Bus Stop Club. And as the year closes out and you might be considering donations, please consider the Bus Stop Club and other groups like this.
This is what I said.
Thank you for welcoming me here today to hear what the Bus Stop Club means to my family and so many other families.
Let me start by telling you a little about me. I am the kind of person who takes great pride in being able to take care of myself and my family. I can actually be a little crazy about it, defensive even, if someone seems to suggest that I can’t do it all.
Or at least that is how I used to be before I had my last daughter Katharina.
I am a mom of 4 children. Chris is 27, Nick is 25, Alexandra is 10 and Katharina is 8. I am a high school English teacher. I am co-advisor to Key Club (a Kiwanis group), A World of Difference (a group based off the anti-defamation league), and a group called the Knit-Wits (who like to sit together on Fridays after school and knit, crochet or learn how to knit or crochet). I also advise a group of kids after school in a writing group. I am a member of the Capital District Writing Project. I am used to being the person who holds it all together and still finds time to sit on the front porch with a cup of coffee on a summer morning.
But 8 years ago my son, Nick, who is now 25 had an accident in high school that resulted in a Traumatic Brain Injury, months before I had Katharina. Katharina was diagnosed 15 months after she was born with having survived an in utero stroke, resulting in mild cerebral palsy, vision field cuts, cognitive delays and speech delays.
My world was flung into complete and utter disarray for a few years. I went through a grieving process as I watched my honor’s student son struggle and eventually drop out of college due to his concussion issues. As Kath’s therapies increased and we began to be able to feel around the outer edges of her diagnosis, I struggled with just being able to make a meal, pack a lunch, and pay the bills. I read every piece of literature on strokes I could, I found a wonderful group of parents online who eventually moved to Facebook to share stories with. I grieved the loss of the life I imagined Kath would never have access to.
Slowly over time I grew beyond most of that and my son traveled down a different path, not the one I envisioned for him, but one he has found success and validity on. And I realized that my little girl was a warrior in her own right who was not defenseless. I learned to embrace more freely who she is and how amazing she and this path we are on own, is.
I have met some of the most amazing people who have stayed when it would have been easier to leave and others who I found because we travel the same road.
But one of the most amazing and wonderful people who has blossomed right before my eyes is my daughter Alexandra. While Chris and Nick—awesome siblings in their own ways--have only lived at home for a short period of time since Kath was born, Alex has been the one who has been there every single day that Kath has been alive.
Alexandra is now 10. But she has a soul that is old and wise. And she always has. From the time Alex first met Kath at the hospital, a few hours after she was born, Alex has been linked to Kath in a way I have rarely ever seen except in fiction movies. Alex has always been a Little Mommy to Kath. When my mind blew at the fact that Kath had a stroke, Alex was solid. Poor Alex had to take on roles for older people…she found that if she didn’t put a paper in front of me with a pen in my hand, I probably wouldn’t remember to sign it. If she didn’t remember whatever was going on and needed for school and dance, it was forgotten. It was like that for a couple of years as I put everything I had into understanding strokes and what could be done around the massive damage that Kath works around.
Not once did Alex ever act out. Not once did she throw herself on the floor and demand that she get equal attention. Not once did she blame me if she missed out on something because I forgot. She would rub my back, like she was the mom, and tell me, “That’s okay, mom.”
Who does that at so early an age?
For several years we had Kath’s therapies at home. I was job sharing so every other day I was the one sitting on the floor learning how to make Kath’s muscles want to move and her brain engage; on the alternative days it was my friend and sitter; and every single day, it was Alex. She watched the therapists and then she played games with Kath that made Kath use the same skills she just learned.
Who does that at so early an age?
Alex could get Kath to do things on some days that the therapists and I couldn’t. Many times Kath…even now…will call for Alex to help her before she will call for me or her father.
I often kid around and tell people that Alex was really supposed to be MY mother and I was supposed to be her daughter. Over time my world has righted itself and I am back to being able to think and plan better than those early years. I remember when I was starting to come back and I got frustrated because Alex kept asking me about something, trying to make sure I understood something, and I got defensive, “Oh course I know *that*!” and I realized how far gone I was that she felt so responsible to make sure I got it right.
It was a bit like cold water in my face. I had focused so much on Kath that I often didn’t focus on Alex. After all, she was okay. She knew what to do and how to do this and that…and I then I thought, “Wait a second…she is only 8! She shouldn’t *have* to know all that!”
I was into alternative therapies for Kath as well as the mainstream therapies. We drove, and still do, an hour to hippotherapy…Alex had sibling lessons. When I think of that I cut myself some slack because I think that maybe…maybe…I was not AS bad as I think I was with Alex. Maybe she didn’t raise herself…completely! I did think that *she* needed something that was for her.
I also started to take Kath to massage therapy, the owner of the spa worked to loosen up Kath’s tight limbs. And I let Alex get a massage too, she worked hard with her sister. Why not?
Then one day a retired teacher, the receptionist, who worked at The Ivy Spa told me about the Bus Stop Club. She knew I was trying to make sure that I didn’t let Alex slip through the cracks. She told me this was a group she volunteered at which supported the sibling of a child with a disability.
The second meeting Alex could have gone to was a trip to Target, to go shopping. Each child was given a gift card to pick a gift for themselves. I didn’t send her because I felt like I didn’t know these people who would be taking my daughter on a bus to a store. And what was with this spending money? Huh.
After that Alex went every month. My quiet, shy girl loved going. She got to have pizza! Although I waited in the building, grading papers at a small table at the YMCA, she felt like a big kid, going to the meetings by herself. She had time to talk to other kids who had brothers or sisters with a disability or illness. Many times she told me how much easier she had it than other kids. Every time she felt like she belonged.
The people who volunteered made my quiet, shy, strong girl feel special. They listened to her. They asked her questions. They didn’t make her feel rushed (something I was often guilty of). After a sharing time the kids played games and then they had a choice of swimming or basketball. Alex always chose swimming. She is a fish who loves water…it doesn’t matter if it is 20 degrees outside. She loves the Y’s pool.
When Alex gets in the car after a meeting, she is relaxed and excited. She has talked with other people who ‘get it.’ At school she is an academic. At home she is many things—daughter, sister, Kath’s cheerleader, mother’s helper. At Bus Stop Club, she is Alex. She has a sister who has different abilities, but she is still Alex.
During the last 8 years my family has continued to struggle financially. Because of Bus Stop Club we have been able to take the girls to basketball games. Alex has even gone down to the court at half time and taken shots! We have gone to baseball games! We have gone twice to Six Flags in MA. We haven’t taken a vacation in years so having the bus, the tickets, and meals taken care of for the day made it so we could concentrate on just the kids for the day. My son Nick has even come and shared the day with us. Alex did go shopping at Target last year with her gift certificate and she bought herself something and she, of course, bought Kath a little something.
Alex has not been able to go to meetings this school year because she has made her dance school’s competition team and both are on the same night. But we look each month to see when we get the emails to see if there is something she can attend. And we will keep doing that because we know she will be welcomed back at any time. What a great feeling.
Alex made connections through Bus Stop Club. She felt like she was not the only person in the world with a sister who had a disability and a family that struggled sometimes.
It’s harder for adults to make these kinds of connections, but when the families all sit together in an arena, or on a bus, we may not have deep conversations about the future of the country or religion, but we all know that we are all going through something similar. And for just a couple of hours we are less alone.
And that less-alone feeling that is provided by you, by Bus Stop Club, makes it so we families can sometimes reset ourselves, stop the teetering for a couple of hours, so we can do what we need to do the rest of the time. I will never again believe I can do it all on my own, but I also know that it’s okay that I need and get help sometimes. Thank you for all you have provided my family and so many other families.