Dear Beloved Readers:
Our road trip was heaven and hell. I will be blogging about it in the near future. One of the heaven parts of it was an idea that I will interview Warrior mothers and showcase their answers here for all to enjoy!
We were back late last week, running to get dogs from kennels and trying to come back to normal. Work for me- and school for Anna the next day. We took a few days to get into the groove. We are almost back into the groove, but last week was a hurricane in coming back.
Now let’s dive in with Mary Keller. The first other mom and Warrior friend I met 23 years ago . She also has a girl, Brianna, with the same syndrome as Anna. We completed this interview in her kitchen in Statesville, North Carolina. Mary lived in Michigan for many years until she craved a different climate, so she made her dream come true and moved to North Carolina. We had a fun but crazy evening and were almost ready to call it a day when the interview happened. In true Warrior style, we fit one more thing into our day.
Her daughter is 29, mobile, eats by mouth, is friendly, and likes to be in routine. Constant routine. She is the mother to Alyssa, 30, and Jonathan, 26, who just welcomed his first child, James, with his wife Tori. She has been a single mother for at least 21 years now.
What’s something about being a special needs mom that people completely misunderstand?
Mary: The care that is needed. It’s constant and it’s tedious. You must experience it, which means you have to live it. You cannot explain it unless you live it.
What has been the hardest moment or phase and how did you get through it?
Mary: Brianna’s lack of desire to sleep. We went through a time when she would not sleep, and if I did she would use her nails to “claw” me and then pull my hair so I could not sleep either. One night I had enough. I had to sleep. I mean I really needed to get some sleep. Even two hours I was trying for. At the time I had an attached bathroom. Since she was in my room I decided to lock myself into our master bathroom. I hid in the closet in that room. I was trying to sleep, in ANY way I could. Then I heard Brianna. She had gotten stuck in the cat door opening to the hallway area. I was mad and upset and worried, and still sleep deprived. I had to wake up my other daughter to have her help me to get her out of the situation. We had to work to get her unstuck from the cat door.
It was a few years that this struggle to sleep went on. I had to devise something to help it. So I decided to put another bed in my room by my bed. I would lay down and she would come next to me and try to wake me. She would succeed and I’d get up and move to the next bed and then the same process would happen. Eventually she would fall asleep and I would as well and we would just have moved around ALOT to make that happen. I just continued to move around in the beds and wear her out. I think this process made her learn we could both sleep in the same room in different beds. This went on for months, but it cured the situation of helping her and I sleep and those horrible years are behind us now. They were excruciating.
Is there a part of your life that you grieved that you didn’t expect to?
Mary: Not really, I mean I was not expecting Brianna to have WHS Syndrome, but I also just thought God gave me two healthy kids so this is mine to handle now.
What does a hard day look like for you from start to finish?
Mary: My day would have nothing to do with Brianna, it would be not liking my work. I’m in a situation close to retirement, but the job is very grueling and unfulfilling.
The days of pinching and scratching were very hard to get through, the days when your kid is crying and they are trying to get you to understand but you can’t understand. You have no idea how to fix it.
What does strength actually look like in your day-to-day life?
Mary: Getting through the day without crying. With all that life brings us, not just Brianna. It’s a strong day when you make it through without crying.
Do you think society is truly inclusive or just thinks it is?
Mary: It just thinks it is. Society is based upon a lot of different types of people; the people are what make it more accepting or not. North Carolina has been better than Michigan.
What are your non-negotiables for your own health?
Mary: Those would be watching hockey games, which play a huge part in keeping me sane, concentrating on the sport. I love to get involved and scream like I’m in the stands. I have taken my other children and Brianna to the game on occasion. The other part of my healthy living for me is having my pets. I love my cats and my new dog, Levi.
How do you handle burnout when you just can’t get a break?
Mary: Taking the day and the problems one chunk at a time. I get things done as I can, not overpushing myself. And V-8 Pomegranate Blueberry Energy drinks, I love these. I drink a handful a day.
If your life had a theme song right now, what would it be?
My wish by Rascal Flats (danced with my son at his wedding to this song).
What would you say to a brand new special needs mom on day one?
I would say you got this. God knows that you have this and that’s why you have been chosen; you are strong enough. You can get through it.
Thank you Mary for the interview, the friendship and the powerful will to do this every day. It is a choice, it is always a choice.
And thank you for reading our blog.
