This is a post that I've been working on for several days. Sometimes people ask me what my day-to-day life is like. I guess some people have a hard time wondering what a person who can't move does do all day. So, here is a rundown of what a typical day in my life is like:
My day starts around 6 AM when my mom comes downstairs to give me my first round of pills of the day. (I take pills five different times a day for all sorts of things like, muscle spasms, pain control, kidney function, under-active thyroid, etc.) Then I go back to bed, although I usually don't fall back to sleep. This is my thinking time when I pray, daydream and think. (This is often the time where I get ideas for new blog posts.)
My mom comes back at 8 to start our morning routine. I eat breakfast, she washes my face and things like that. Then around 9 a neighbor or friend from my church comes over to help my mom dress me, wash my hair if it's a "hair" day (Tuesday/Thursday/Saturday) and get me up in my recliner. (If I'm staying at home all day I just sit in my recliner rather than my wheelchair because it's much more comfortable. If I'm going out, then it's the wheelchair for me!)
I'm up for the day by 9:30 or so. If it's a hair wash day, then my sister Chandra spends the next hour drying and flat ironing my hair. It's quite a process, but fortunately we only do my hair three days a week! After I'm up then I get on my computer and I work on my computer all day until three or four in the afternoon when my mom and I start our afternoon routine, which includes my bath and other personal care.
My mom and I have dinner together around five. After dinner is over I get back on my computer. I'm really good at multitasking, and I spend the evening working on my computer while simultaneously watching TV. Or sometimes I'll work on my computer while my mom reads to me. Mom usually goes to bed around 10 PM, but I keep working on my computer until my sister Chandra comes home from work (anywhere between midnight and 2 AM). I really enjoy my evenings on my computer because I get a lot done and am quite productive.
This is what my weekdays are usually like. Sometimes Chandra and I go shopping or to the movies on Saturday since she's off on the weekend. The three of us always go to church on Sunday morning and then spend the rest of the day together. I love weekends because Mom, Chandra and I have fun hanging out together.
Here's a little bit about my caregivers:
The brunt of my personal care falls on my mom, as she is my main caregiver. I don't have a staff of nurses (too expensive), so it's basically my mom, my younger sister, Chandra and two family friends from church that each come over three mornings a week to help my mom get me dressed and up for the day. Here's a little bit more about what each of these people do for me:
Mom: my mom doesn't work outside the home and she stays home with me just about all day, every day. She gets out of the house on Tuesday and Thursday mornings to run errands, take care of things or do things that she wants to do while Chandra does my hair. Mom and I get along really well and we rarely disagree. We're each other's best friends and we really enjoy being around each other. (That's fortunate since we don't have another choice!)
Chandra: is my youngest sister and still lives at home. Although she has a full-time job she still helps our mom with a lot of my care. She puts me to bed each night after she gets home from work. (She puts my computer away, bushes my teeth, adjusts me, etc.) This works out well for us. My mom usually goes to bed around 10 or 10:30 and I like to stay up late working on my computer. My mom is free to go to bed since she knows Chandra will situate me after she gets home from work. Chandra also does my hair on Tuesday and Thursday mornings since she doesn't go into work until 2 PM. Chandra is off work on the weekends, so she helps our mom with my care on the weekends, too.
Linda and Kellie: two friends from church that live close by that each come over three mornings a week to help my mom get me dressed and up for the day. It would be impossible for my mom to get me dressed and up all by herself, so we really appreciate the assistance that these friends offer.
I've been paralyzed since 2003, and one of the uneasy feelings about my situation is not knowing where Mom and I will get the help we need on a permanent basis. However, the Lord is mindful of our needs and has always provided someone to help us. Several of my sisters have lived here for short periods of time and have been able to help our mom with my care. When they've moved on there's always been someone else to take their spot, or our circumstances have changed in some way so that we're still able to get by. I'm so grateful for the Lord and that He watches over me.
My day starts around 6 AM when my mom comes downstairs to give me my first round of pills of the day. (I take pills five different times a day for all sorts of things like, muscle spasms, pain control, kidney function, under-active thyroid, etc.) Then I go back to bed, although I usually don't fall back to sleep. This is my thinking time when I pray, daydream and think. (This is often the time where I get ideas for new blog posts.)
My mom comes back at 8 to start our morning routine. I eat breakfast, she washes my face and things like that. Then around 9 a neighbor or friend from my church comes over to help my mom dress me, wash my hair if it's a "hair" day (Tuesday/Thursday/Saturday) and get me up in my recliner. (If I'm staying at home all day I just sit in my recliner rather than my wheelchair because it's much more comfortable. If I'm going out, then it's the wheelchair for me!)
I'm up for the day by 9:30 or so. If it's a hair wash day, then my sister Chandra spends the next hour drying and flat ironing my hair. It's quite a process, but fortunately we only do my hair three days a week! After I'm up then I get on my computer and I work on my computer all day until three or four in the afternoon when my mom and I start our afternoon routine, which includes my bath and other personal care.
My mom and I have dinner together around five. After dinner is over I get back on my computer. I'm really good at multitasking, and I spend the evening working on my computer while simultaneously watching TV. Or sometimes I'll work on my computer while my mom reads to me. Mom usually goes to bed around 10 PM, but I keep working on my computer until my sister Chandra comes home from work (anywhere between midnight and 2 AM). I really enjoy my evenings on my computer because I get a lot done and am quite productive.
This is what my weekdays are usually like. Sometimes Chandra and I go shopping or to the movies on Saturday since she's off on the weekend. The three of us always go to church on Sunday morning and then spend the rest of the day together. I love weekends because Mom, Chandra and I have fun hanging out together.
Here's a little bit about my caregivers:
The brunt of my personal care falls on my mom, as she is my main caregiver. I don't have a staff of nurses (too expensive), so it's basically my mom, my younger sister, Chandra and two family friends from church that each come over three mornings a week to help my mom get me dressed and up for the day. Here's a little bit more about what each of these people do for me:
Mom: my mom doesn't work outside the home and she stays home with me just about all day, every day. She gets out of the house on Tuesday and Thursday mornings to run errands, take care of things or do things that she wants to do while Chandra does my hair. Mom and I get along really well and we rarely disagree. We're each other's best friends and we really enjoy being around each other. (That's fortunate since we don't have another choice!)
Chandra: is my youngest sister and still lives at home. Although she has a full-time job she still helps our mom with a lot of my care. She puts me to bed each night after she gets home from work. (She puts my computer away, bushes my teeth, adjusts me, etc.) This works out well for us. My mom usually goes to bed around 10 or 10:30 and I like to stay up late working on my computer. My mom is free to go to bed since she knows Chandra will situate me after she gets home from work. Chandra also does my hair on Tuesday and Thursday mornings since she doesn't go into work until 2 PM. Chandra is off work on the weekends, so she helps our mom with my care on the weekends, too.
Linda and Kellie: two friends from church that live close by that each come over three mornings a week to help my mom get me dressed and up for the day. It would be impossible for my mom to get me dressed and up all by herself, so we really appreciate the assistance that these friends offer.
I've been paralyzed since 2003, and one of the uneasy feelings about my situation is not knowing where Mom and I will get the help we need on a permanent basis. However, the Lord is mindful of our needs and has always provided someone to help us. Several of my sisters have lived here for short periods of time and have been able to help our mom with my care. When they've moved on there's always been someone else to take their spot, or our circumstances have changed in some way so that we're still able to get by. I'm so grateful for the Lord and that He watches over me.
4 comments:
Hello my dear, your post has made me reflect very deeply on my own life. I am also 26 years old and although I consider myself to be very thankful for God's blessings, you have shown through your post a truly thankful spirit. You are a beautiful light and a blessing. I pray that God fills your every second with His Joy, Peace and Grace. You should really consider writing a book titled after your blog, you have the ability to touch and transform many lives.
God bless you :)
~Toni from The Bahamas
Toni,you sound like a beautiful young woman, inside and out. I can tell you let your light shine! Thank you for your comment.
--Heather's mother
Thank you for posting this. I too have been curious about your typical day. I also totally agree with Toni. You write so well and have such an amazing outlook on life. I"d buy your book :)
Heather, I think it is fascinating to hear about how you do the things you do -- things that we don't typically think about. I am still in awe of you using the computer the way you do! Thank you for sharing insights into your life. You are an inspiration!
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