It’s that time of week again; time to look into the day in the life of a woman. This week I was supposed to feature another lady, but she had an opportunity to watch her granddaughters (twins!) compete for a softball championship in Southern California. Very awesome.
With that in mind, I will just have to fill in as a substitute.
Hi, I’m Amy.
I am here to tell you all about a day in the life of a mom with a special needs child.
I am a special needs mom. That’s a term loosely used to describe a mom of a kid with some kind of medical, emotional or mental disability. Though we no longer have a handicap parking pass, I still have my hands full with my little heart warrior. I have four boys, I homeschool, I bake, blog and design websites. And, yes, I am a glutton for punishment. I will be your meager substitute today and fill you in on my little life.
I will start like Dickens: I was born…
I will start a little more current to date.
This morning, I woke up at 5:40. Yes, on purpose. We are in a drought right now so I have to go outside to water the herbs and tomatoes before the sun scorches them. My poor basil hides under brown paper sacks after their watering like shriveled shells of their former selves. Poor dears. Usually, I have a baby on my hip by the time I am out watering. Baby Jamie and I talk about the rabbits we see running across the grass, while I water the thirsty earth.
Then there is the morning laundry. I try to run a load of laundry before bed time so there is a wet load waiting for me. Again with a baby in tow, I make my way into the basement to fill my huge blue Ikea bag with wet clothes. Jamie likes to bang on the washer with his spitty little fists while I struggle to unload the clothes. Outside we go again. It is about 6:30 by now and already the sun is getting hot. I put the baby in a little swing hanging from a tree near my clothes line. We chat and make faces while I hang up the clothes. Just about when he loses his patience and wants breakfast, I quickly hang the last pair of socks.
Breakfast: Jameson gets a big whopping bowl of oatmeal. He is a hefty eater and makes no bones of out-eating his bigger 3 year old brother. I hear little feat running overhead. Jack’s awake. Time to brace myself for the storm. Jack is a pistol and I never know what he is ready to dish out in the mornings. When he spies me coming up he stairs to get him, he jumps into my arms and kisses me hard on the mouth. Oh good. He’s in a good mood. Down we go again, to the kitchen.
Jack kisses his baby brother’s feat and trots in circles around the table while I make scrambled eggs and toast for the rest of the family.
After breakfast my husband, Andrew, goes upstairs to the office (our bedroom with a desk in it) and works on website development. Downstairs the boys and I are busy with chores. Israel and William do the dishes and whatever laundry that belongs to them. I play with the littles and read them stories. Lately, I have been stripping the library of their Mo Willems collection. Have you ever read the Knuffle Bunny or Pidgeon books? I belly laugh when we read them together. So cute.
Then it is time to put Jack’s heart monitor on. He recently had an irregularly low heart rate so the hospital prescribed a 24 hour heart monitor to be worn. He lays on the couch while I clean the sites for the leads with alcohol. I let him help me snap the leads onto the sticky pads that will go on his chest. There are six in all. I have done this for him twice before but I still have to follow a diagram to make sure I am putting the leads on the proper sites. The instructions say to be sure that I don’t put the sticky pads on any scar tissue. Good luck with that. Every lead site has a scar from some surgery or procedure. Jack hates the way the heavy leads feel tugging on his chest but he’s a great sport. I program the monitor and put it in his little pocket, praying that he doesn’t jump into the pool.
Meds: Until recently I gave Jack 6 different meds in the morning. Now he is down to three. Progress! I draw up his meds and lay them on the counter. He puts the syringes in his mouth and gives himself his own meds. Then he lets the syringes hang on either side of his mouth and pretends to be a walrus. All part of the morning routine.
Normally, at this point the big boys and I start school. We are in summer break so we gather in the living room and have a time to pray and maybe read a Bible story. Lately, I have started reading from a book with stories of people who experienced the Revolutionary War. We are going to a Revolutionary War reenactment in two weeks and are brushing up on our history. We read a chapter then the boys head upstairs to play legos until their eyes cross. I head into the kitchen.
It is Monday, baking day. Our house, like most New England homes, doesn’t have an air conditioner (save for the little window units) and turning on the oven can turn the place into Hades in less than five minutes. The humidity in my kitchen is cruel to bread loafs so I have turned to my handy little bread machine again. I pop the ingredients in and push start. Magic. Then I make a loaf of artisan style white bread to use for the following day. This I do by hand because it really doesn’t seem to mind the humidity and can sit on the counter without being kneaded for up to 24 hours. You could say it’s not a very kneady dough (bad pun).
Jack is getting wild and restless while I make a big batch of pizza dough for Friday so I quickly finish up. By now he is covered in flour and won’t stop slapping the bread dough that is sitting on the counter. I don’t blame him, it’s very slappable. Time to play outside.
The littles and I go check on the chickens. Dad likes to take care of the morning chicken chores so we don’t do much but make sure they have plenty of cold water. Then we play until it is too hot to think straight.
Lunch: Usually we have sandwiches or beans and rice. Sometimes we have cookies. That is another matter altogether. Today we are having leftover macaroni and cheese with broccoli. The broccoli has turned limp and soggy. We turn to cookies instead.
Rest time. Israel usually heads into some quiet corner to read his Hardy Boys books and William is making some kind of
messy creative arts and crafts. Jack is tired and when he is tired he gets off the charts naughty. Like push the baby over, bite the big brothers naughty. So I wrestle him in a tickle fight to get out some aggression. (A little trick I picked up from my smart husband). Then we read for about a half hour. Jamie is napping at this point so I can focus on Jack and give him attention. Jack is finally content to play nice so I work on a logo design for a new website.
When Jack was heading into surgery for the second time, one of the attending cardiologists told me that there was a chance that he could wind of with a learning disability of some kind and development issues due to his failure to thrive. Now Jack is three and, though he is quite clever, I can see that he is much more flighty and hyper than most three year olds. This makes my day revolve around keeping him stimulated but not overly, and keeping him out of trouble. He is sweet and wonderful, but can be extremely fitful and aggressive.
It’s summer, so I am trying to cook less. For dinner we have black beans with basmati rice and a salad. Done. In the winter I try to make something more interesting and thoughtful but it’s too darn hot right now.
I heard a lovely podcast by Sally Clarkson about the art of having a peaceful meal with your family and the importance of training your kids to know how to dine and not simply eat. She talks about setting the table with care, lighting a candle, eating healthy food and maybe playing some music. I have been trying to incorporate this into our meal times. I thought I would experience totally mutiny from my crew, but instead they love it. One boy lights the candle another picks out a station on Pandora and together they work on setting the table. I have noticed that when we distinguish dinner time as a special time by doing the music and candle etc. the boys tend to be more engaging and polite. Go figure. Set the scene and the act comes to life.
Up until recently, I or my husband would have made up Jack’s chemo solution and administer the anti-nausea drug before dinner. Then we would administer the drug once a half hour had passed. Now we don’t have to give him chemo and we basically fill that time with extra story time and sighs of relief. It feels so strange not to give him chemo. Good strange.
After the bedtime battle is done. Bedtime stories have been read, teeth brushed, last minute philosophical questions answered, I try to spend time with my husband. But normally, I fall asleep next to Jack, with my hand on his chest counting his respirations per minute.
Unique challenges I face as a special needs mom?
I can’t make plans. I don’t know what will happen around the corner because our son’s disease can and often has, taken a sudden turn for the worst. Things are getting easier for us. I don’t have to cart around a heavy oxygen tank anymore and the older kids don’t have to go on germ lockdown anymore. But we still have our monthly hospital trips that last all day and can end in terrible or wonderful news.
Blogs I follow:
I love simplehomeschool.net, sugarpiefarmhouse.com, themighty.com, firstname.lastname@example.org, reformationacres.com., and now recently I found my friend’s blog called email@example.com.
Wisdom I would like to impart on new moms:
If you are having children to heal wounds in your childhood, consider a different profession. As Chuck Swindoll said in his book Parenting: Surviving to Thriving, you have to love yourself correctly before you can love your children correctly.
Thank you all for joining me today. I hope your day is filled with peace that surpasses understanding a hope for a good future.
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