People often say to me, "I don't know how you do it." They don't understand how I can make it through the day with a young child while spending most of my time either sitting or lying down. People like to know what my daily life is like, how I keep up, and how my son is so happy and healthy despite having such a disabled mom. Keep reading to find out what an average day is like for me.
7:00 am - Will gets up to get ready for school. I keep sleeping.
7:15 - William wakes up and comes into my room. He crawls in bed with me, snuggles, and falls back to sleep.
7:45 - I am mostly asleep, but aware that Will has just brought my Gatorade in for me. I keep sleeping.
8:30 - I am still very sleepy, but having trouble sleeping. I continue to wake and fall back asleep.
9:15 - I’m still sleepy, but completely unable to sleep anymore. I drink some of my Gatorade.
9:25 - William wakes up. He snuggles and talks to me.
9:30 - I take my morning meds and drink more of my Gatorade.
9:32 - William is finished with talking and snuggling. He is ready to play and goes out to the living room. Even though I stay in bed, William is only 15 feet away. It is easy for me to listen to him and know that he’s okay.
9:37 - I walk only three steps from the bed to the bathroom. Having a small apartment is such a huge help with conserving my energy, especially in the mornings when I am so tired and weak.
9:39 - I am back in bed to rest and finish my Gatorade.
9:43 - William comes in and asks for a pancake. Will has made some, and we have them in the freezer. I am still too weak to stand long enough to prepare a pancake for William. I ask him to get some yogurt for both of us, promising to get him a pancake later when I can get out of bed. He is disappointed, but complies.
9:46 - William has to go potty. He can do everything by himself except for getting his pants back on. I ask him to come stand up on the bed, and I help him get his jammie pants pack on.
9:56 - William comes to my bedside to bring me yogurt. He runs back to the kitchen for a spoon, and brings one back right away.
9:57 - William goes into the living room to eat his yogurt.
10:00 - I turn the bedroom tv on and watch Martha Stewart. Listening to the noise and conversation help my brain to wake up.
10:02 - “Mommy, I need you!” I hear William call from the living room. I go out to the living room; thankfully the middle of the living room is only 9 steps away from my bed in the bedroom! William says, “It is a weird one.” A weird cartoon had come on the Disney channel, so I switch to Dora the Explorer on Nickelodeon.
10:04 - I lie back down in bed.
10:11 - William comes in and says, “Mommy, the children are playing outside. Can you take me outside?” Sadly I tell him that I cannot. It is usually too hard for me to go outside in the morning, and summer temperatures often make going outside completely impossible for me. I ask William if there is something special we can do together inside. He says, “I just want to watch Dora,” and goes back to the living room to finish eating his yogurt and play while watching Dora.
10:31 - I am finally able to finish my yogurt.
10:32 - I get out of bed and put on my compression. My heart is pounding and I am worn out, so I lie back down in bed.
10:36 - My heart has stopped pounding, so I try to get up again. I get dressed, brush my hair, and wash my face.
10:42 - We are all out of coffee today, and so I am unable to get my morning dose. I make a cup of black tea instead. I also get the pancake I promised William.
10:47 - I sit on the floor with William and we eat second breakfast together.
11:00 - It look at the thermometer and find that it is only 75 degrees today! I get William and myself dressed, put on my cooling vest, and we head outside. While outside I recline in my chaise lounge, visit with the other moms, and work on my quilt mending project in my lap.
11:56 - The temperature has reached 80 degrees, and I can no longer stay in the heat. I have to go inside, but my neighbor kindly volunteers to watch William for me because they will be staying out a little bit longer. This is helpful because it gives me a chance to have some quiet in the apartment and check my email.
12:17pm - William comes inside, and I get a drink for him.
12:20 - I am tired and needing to rest. William asks to watch 3,2,1 Penguins. I gladly say yes because it gives me a chance to lie down in my recliner for a while. While reclining, I work on crocheting a baby blanket, resting my arms occasionally.
12:49 - Will comes home from school and brings a fresh bag of coffee beans. Yay! We have coffee again! Will makes lunch for us and we visit together for a while. For lunch, as for many meals, I eat while in my recliner. It is much easier than trying to sit up at the table. Will and William join me in the living room for meals.
1:40 - William plays with his daddy for a few minutes before Will has to go back to school. I rest in my recliner and enjoy a fresh cup of coffee and a magazine.
2:15 - Will goes back to school. William asks me to play cars, but before we can get started, my neighbor comes by with a loaf of bread and several bagels from free Panera bread day up at the school. William wants a bagel, so he sits on the floor and eats half a bagel while I lie down next to him, finish my coffee, and share a few bites of his bagel.
2:40 - William and I sit together in my recliner and read books.
3:11 - We finish reading and get ready for naptime.
3:31 - William is going to sleep now. I catch up on some of my blog reading.
3:50 - I go to bed to read my Bible and rest.
4:50 - Will calls, and I talk to him for a few minutes. I give him the grocery list over the phone so that he can pick up what we need before coming home.
4:55 - I realize how tired and sleepy I am, yet how much is still on the to do list for today. I feel like I haven’t accomplished anything today, and I have to remind myself of how much I have been able to do. I have loved and cared for my son all day. He is happy, healthy, and content. I got breakfast for him (well, half of it!). I took him outside for an hour. We read books together. I spent time with my husband over lunch. I read my Bible. I did a little bit of work on my crocheting project and my quilt mending project. I have worked hard and used the energy God gave me. The to-do list may still be long, but I have made progress. Slowly and steadily I will continue to get stuff done. Meanwhile, rest is important. I need to be well rested for when William gets up from his nap.
5:12 - I am still very tired, but I realize that I need to get up and wake up William. If he doesn’t get up soon then he will never go to sleep by 9:00, and I know that I will need to go to bed by 9:00 whether he does or not. William and I snuggle and talk. He asks for a snack to watch his video about animals.
5:20 - I put William’s video on and bring him the rest of his yogurt from breakfast. I lie down in my recliner unsure of what to do next. I need to pay some bills, but because most of my energy and brain power has been used up today, I decide that paying bills is going to have to wait for now.
5:30 - William comes up to snuggle me in my recliner. We watch his video together.
5:55 - Will comes home, and William begs him to play. Will needs to cook supper, though, and I need to rest. William plays by himself for a while and I continue to rest in my recliner.
6:30 - I am getting a little more energy now. I use Will’s laptop while in my recliner and get some things accomplished while Will cooks and William plays and talks to me.
7:23 - We eat supper together.
7:59 - I take a shower. Because we have a handicap accessible shower now, I am able to do this by myself on most days. In the past I always needed help from Will to prevent falls. Showering is still hard for me, but with the many aids I have in the bathroom, I am able to complete the task.
8:30 - I lie down in bed to recover from my shower. While I am in bed we do family devotions.
8:58 - Will puts William to bed. I stay in bed for the night. First I do a little bit of work. I pay the bills and open some mail.
9:25 - Will brings me some tea. What a sweetie he is. I keep working on paying bills.
9:40 - I am finished paying bills. It feels so good to have something to cross off the to-do list in my head! I rest for the remainder of the evening while Will does homework. I read on the internet using Will’s laptop, catch up on email, and read some in my book.
11:00 - Will and I spend some time together before lights out.
11:42 - I am finally feeling sleepy enough to take my meds and go to sleep. I take my sleeping pill and night time meds, brush my teeth, and crawl back into bed. Even with a sleeping pill it takes me a long time to fall asleep. Finally sometime between 12:30 and 1:00 I fall asleep.
This was a good day. It was a hard day, too; it always is. Life is hard. But I have been blessed in so many ways. God has blessed me with just what I need to make it through each day, whether a “good” day or a “bad” day. I have a small and well laid out apartment, making it easy for me to get around. I have great neighbors who are willing to help me when I need it. I have an easy going little boy who is usually flexible according to what I need. I have a helpful and caring husband, who is faithful and devoted to me no matter what trials have come. I am blessed indeed!
~ July 2009
1:30am I wake up, get a drink of water from beside my bed, and fall back to sleep.
3:00am I wake up, take a sip of water, and go back to sleep.
4:00am I wake up, guzzle some more water, and go back to sleep.
7:30am I wake up, get a drink, and fall back to sleep.
7:54am I wake up, and slowly fall back to sleep.
8:10am I wake up, but unfortunately this time I can’t fall back to sleep. I lie in bed, my body refusing to move.
8:18am My husband, Will, brings in my Gatorade and fruit for breakfast. He silently sets it on my nightstand. Will doesn’t even know I’m awake yet because I’m still not moving.
8:25am I need about two more hours of sleep, but it just isn’t working. I roll onto my side, take my meds, and try to eat some fruit.
8:27am I need to go to the bathroom, but my legs still aren’t working, so I page Will. He helps me to and from the bathroom with never a complaint, only love.
8:34am I prop up in bed with my pillows trying to convince my body to wake up. Hey! Maybe reading Pride and Prejudice will help my brain to wake up!
8:36am Maybe not.
8:37am Will brings me a cup of hot chai tea. What a sweetie he is. :)
9:03am My son, William, wakes up. He used to sleep in until 10 or 11am for me. How can I change his sleep schedule back to the way it used to be?!!!
9:05am William is quiet. Maybe he went back to sleep. I can keep eating my breakfast (and not have to share it with him!).
9:08am Nope, he’s jabbering again. William is so happy and cheerful; how can I ignore him? I get William out of his bed and crash back into my own. Breakfast will have to wait. But that’s okay; my tummy is revolting against me anyway.
9:09am William tells me that he has a poopy diaper. This sounds like a problem for Will. My arms are still too weak.
9:12am Will changes William’s diaper. Ahhh…clean baby. William crawls up into bed with me, grinning and full of snuggles.
9:20am William tells me all about the lion on his jammies, the flower on mine, the chicken in his hand, and the Burt’s Bees lip balm on the nightstand. “I love you,” I tell William. “Uh-huh,” is his reply. What? No kisses?
9:23am William leaves me to go find his Daddy. Apparently I’m boring this morning. Before leaving the room William makes sure to blow me three kisses. Awww…he loves me.
9:40am William comes begging me to play with him and his new toy moose. I put on my support stockings in hopes that this will help my blood to flow better, as it is doing a terrible job on its own today.
9:45am William brought his moose and other animals to the bed so that I don’t have to get up yet. He is either very thoughtful or very impatient.
10:03am I drag myself out of bed.
10:07am Goodbye to Will; he is off to work.
10:10am I get a banana for William for breakfast.
10:12am My mom comes home. I won’t have to face the day with a toddler by myself. Reinforcements have arrived!
10:29am After drinking a lot of juice and only eating four bites of banana, William gives up on breakfast. Mom helps me put away the breakfast dishes.
10:40am William and I change out of our pajamas and brush our teeth.
11:00am I’m starting to feel awake! William says goodbye to me as he goes upstairs to help Nana vacuum. I have time to get on the internet to check my email and the DINET forum. As I’m not often able to get out of the house or go out with friends, this is my connection with the outside world.
11:53am William discovers a Mr. Potato head in the closet. I lie down on the living room floor and we play with it together.
12:13pm William takes off up the stairs, and I’m too tired to chase him. Mom goes up with William and brings down the Lego’s he was after. I continue to play with William on the living room floor.
12:17pm I make a Lego house; William plays with it, and it falls apart. I make a Lego train; William plays with it, and it falls apart. Poor guy. He is oh-so-careful, but toddler hands aren’t quite gentle enough.
12:54pm Lunch time! Mom has made lunch for us. William doesn’t want lunch because he would much rather play. He runs away, but Mommy is just too clever. I take a shortcut and grab him before he escapes. William laughs and willingly, though with some disappointment, allows me to put him into his highchair to eat. William holds out his hands, reminding me to pray and thank God for the food.
1:16pm Lunch is over, and I crash down onto the sofa from fatigue. It is just too hard to keep sitting up. William begs me to play Lego’s with him, and tries to lift me off of the couch. I roll off of the sofa and onto the floor to play with him.
1:20pm I am wondering why William was begging me to play with him; he’s ignoring me now. I rebuild the Lego house…and before long it is broken again. I don’t mind, though. It has been a long time since I’ve played with Lego’s. It’s fun!
1:32pm Lego’s are old now. William says it is puzzle time.
1:40pm. Mommy says it is nap time. After reading a book together, William goes to bed with his new moose and kangaroo in his hands. They are sleepy too, you know. After putting William down and singing, Hush, Little Baby, I crash into bed exhausted and hoping for sleep. I can’t usually fall asleep in the afternoon, so I doubt that sleep will come.
2:40pm I actually do fall asleep, and am dreaming, when suddenly I am startled awake by the phone ringing. What a wonderful, yet sometimes most inconvenient, invention.
2:49pm Sleep isn’t going to work anymore, so I decide to get some tea to help me wake up. I try to work on some correspondence and medical filing/paperwork, but I’m too tired to keep sitting up. I lie back down in bed.
3:55pm William wakes up with a wail. He comes into bed with me, but says he doesn’t want to be my snuggly boy. He’d rather play with a ball. I’d rather have snuggles. William plays on the bed while I sit next to him and try to get my medical book organized and ready for a doctor’s appointment tomorrow.
4:22pm William leaves me, but then comes back with a tub of Lego’s. I ask William if he wants a dry diaper. “No,” he says decidedly. William would much rather not have play time interrupted.
4:28pm I’m very tired and unable to play, so I ask William if he wants to watch I Dream of Jeannie with me. He almost smiles. I ask William if he wants to eat popcorn; he grins and does his excited face! Mom pops some popcorn for us and we all plop down on the sofas for some afternoon entertainment (and more rest for me).
5:28pm Jeannie is over. William asks for a drink, and his Nana gets him one. He then tries to pick me up off of the couch! I ask William if he will bring some books to me so that we can read together. But he isn’t into reading today; he wants to play. I lie down on the floor and we play with Lego’s – again!
5:47pm William thinks he found a bee. I crawl across the living room to check. There isn’t a bee, but there is a dead bug and a dead spider. I pick them up with a paper towel and throw them away. Meanwhile William is saying, “Bee…spider (pronounced “pee-pee”)…die…” “Yes, William, the spider and the bug died.”
5:50pm William plays contentedly by himself for a while. I work on more medical do-dah, and get frustrated with my insurance for not covering the medication I need. They’re making me jump through all sorts of hoops (which is very difficult in a wheelchair!) just to get a medicine that is second or third best, if I get it at all.
6:20pm William brings me his shoes because he wants to go out and get the mail with Nana. I have fun looking through the mail when he brings it back in to me. Mail time is fun when I get good stuff.
6:30pm It is supper time. Only Mom, William, and I are home right now, so we eat together.
6:45pm I’m even more tired, so I go to lie down on the sofa. William plays next to me.
6:47pm. William is no longer content to be next to me. He crawls over top of me and snuggles in my arms.
7:01pm William goes to the kitchen and somehow gets the leftover bowl of popcorn off of the counter without spilling it. He brings it to me, and wants to eat it. I tell William that because he didn’t eat his vegetables at supper, he can’t have popcorn. He doesn’t argue because he is becoming well acquainted with the “no vegetables, no treats” rule.
7:10pm William plays with his ball, and then begins to throw it around the living room. I tell him not to throw the ball in the house, but in my brain fog daze I don’t even realize that he is still doing it.
7:12pm I notice what is going on, and again tell William to stop throwing his ball. This time he does.
7:13pm William brings a book for me to read to him, but then we hear the garage door. Daddy is home!!! There are hugs, kisses, grins, and snuggles. This is an exciting part of the day.
7:15pm I lie down on the bed for a few minutes. Will and I each share about our day.
7:30pm I go to the kitchen to join Will while he eats supper.
7:40pm Will has some phone calls to make, so I get back to working on medical stuff. William is happily playing by himself and watching Moose Tunes.
8:30pm Will bathes William. I crash out on the bathroom floor exhausted from the day.
9:00pm Will helps me to shower and get my pajamas on. I crash onto the bed, wiped out from the whole process.
9:25pm Everyone gathers in the living room and is entertained by William and his summersaults.
9:45pm Will feeds William second supper, and I desperately try to finish my stuff on the computer before I fall over. The day has just been too full of medical phone calls and paperwork.
10:15pm William comes running toward me to give me a big hug and goodnight kisses. He is tired and actually excited to go to bed.
10:30pm I brush my teeth and get ready for bed.
10:55pm I crash into bed with my heating pad. Ahhhh….much needed rest. It has been a hard day. I read my devotions, pray, and thank the Lord for the day. Soon Will joins me; this is one of my very favorite parts of the day. I get to snuggle with my husband, talk with him, pray together, and drift off to sleep.
As I’m waiting to fall asleep I think about the day. It has been a hard day, an exhausting day, and I didn’t get much accomplished. I wasn’t able, nor am I ever able, to do the laundry, cooking, cleaning, or shopping like most wives and moms can do. But I did what I was able to do, and I worked to the best of my ability. Even though I couldn’t do much physically, and all of my energy was used up by night time, I can say with confidence that today was a good day. With a little bit of help I was able to take care of myself and William. He had a good day and was happy. I was even able to get a little bit of paperwork completed! I was able to talk with my husband and to encourage him. Yes, like any other, today was a hard day, but it was a good day. I can go to sleep knowing that I worked hard, and I completed the tasks to which God called me today.
~ Summer of 2007