As a special needs mom with special needs of my own, I'm often asked what my days look like. So, last Friday, I journaled my whole day to give you a glimpse into my world.
Friday, March 10th.
My alarm goes off. I hit snooze about 4 times before dragging myself out of bed to get the kids up for school. Naturally, the two little ones wake up too as I'm getting Katie and Nano out of bed. Both Anna and Davy start whining and crying for their Pediasure and, just like every. single. morning, I remind them that I have to make sure their sloth-like siblings don't miss the bus before I can get their sippy cups ready.
I make sure that Katie takes our dog, Otis outside before she and Nano leave. As the door closes behind them, the two little ones take their whining for Pediasure up about 8 notches. No matter how much they eat, Anna and Davy both lose weight if we don't supplement their diets with a can of Pediasure each day. I get them each a sippy cup and a granola bar before I sit down to check my to-do list and schedule for the day. The house is a disaster and I desperately want to get things cleaned up and back in order. I've had a long string of bad days where I couldn't do much of anything and although my joints are a little achy and I feel kind of blah at the moment, I try to stay optimistic that I can get a lot accomplished today.
I realize that we just finished week two of NO doctors' appointments and have none scheduled next week either. I do a little happy dance in my head and pray that no one gets sick.
I get ready for the day. As I'm taking my morning meds, Davy comes up to me crying "owie" and touching his leg to show me where it hurts. He's been complaining of pain in his right knee everyday for almost a week now, but I can't find anything wrong with it.
I smell something suspicious that seems to be coming from Davy's backside. I pick out some clothes for him and get him changed and dressed for the day while Anna sits near me singing Christmas songs. Davy's a little grumpy because he's on day four of a mild bout of diarrhea, his eczema is flaring up again, and he's fighting a virus. As I set him free from the torture of getting dressed, Anna informs me that she doesn't like frogs because they could eat her glasses. (???) Davy runs over to give me a kiss and then coughs in my face.
I pop a Zicam as a preventative measure against Davy's cold (I swear by this stuff!) and get Anna dressed as I wait for the water to heat up for my London Fog. In case you don't know, a London Fog is a tea latte made with Earl Grey tea. You can find a recipe for it here at Barefeet in the Kitchen. It's my favorite drink next to Chai Lattes.
I haven't done much this morning yet, but I can already feel the energy seeping from my body and pain taking its place. Resigning myself to the fact that it's going to be another day of feeling crummy, I text my older sister, Leah, to see if she can come help out this afternoon when she gets done with work. A few months ago, my younger sister began working as a PCA or Personal Care Attendant for Katie, Nano, and Davy, all of whom have Ehlers Danlos Syndrome like me, but she has the day off today.
Anna and Davy are playing in the boys' room so I sit down to finish updating my to-do list app on Motivated Moms, read my daily devotion, and drink my London Fog. I also spend some time working on the social media aspect of my blog using my daily blogging checklist.
I empty the dishwasher while the kids play with the bean box and kinetic sand at the dining room table.
I stumble over to the couch to sit down. Over the last 50 minutes, I emptied and loaded the dishwasher, and organized three kitchen cupboards because I couldn't stand how messy they were. Every joint, bone, and muscle in my body feels like it's been pounded with a sledgehammer. My legs keep giving out on me. I'm so exhausted that I can't sit up straight, and when I try to talk to the kids, I slur my words and have a hard time forming a sentence.
I don't feel much better, but I leash the dog and load the kids up in the van. We stop at the grocery store first so I can get English muffins for the mini pizzas I'm making for lunch. I realize we're also out of a few other key ingredients so I grab a bag of shredded mozzarella cheese, sliced pepperoni, and a pack of Pediasure. I only have 2 small bags of groceries but have to ask for help taking them out to the van. Otis is waiting patiently in the driver's seat when we get back outside.
We get to the vet's office, and I unbuckle and take both of the kids out of the van. Just as I'm about to grab Otis' leash, my phone rings. It's the vet's office, asking if we can reschedule our 11 am appointment to noon as something came up. I say yes and load the kids back into the van. When we get home, Davy is super cranky. While I lean against the kitchen counter for support so I can make lunch, Davy throws a tantrum because I won't give him a snack. When he throws a bottle of barbecue sauce out of the cupboard in a fit of rage, I put him in time-out on the stairs. Usually, he stops his fit almost immediately when I do that, but today, he continues to scream and cry. Finally, he calms down, and I give him a hug before putting the food in the oven. Two minutes later, he's whining again. I sit back down on the couch to try to recover from going out before having to leave again. Davy proceeds to toss himself around on the couch next to me, occasionally bumping or kicking me which leaves me feeling like I just got pummeled in a boxing match. Even a gentle touch hurts right now.
Lunch is ready, and Davy is overjoyed at the prospect of eating. The food smells really good and I'm hungry so I sit down and eat with the kids even though I know I'll regret it later when the food seems to turn the blood in my veins to lead, I can't keep my eyes open because of the exhaustion, and my joint pain worsens significantly. My Postural Orthostatic Tachycardia Syndrome or POTS often makes me feel sick after eating.
Time to head out to Otis' vet appointment. As I'm walking down the handicapped ramp in our garage, my knee gives out and bends backward. I recover without tripping, but then see Davy do the same thing in front of me and fall down. I pick him up and carry him to the van.
The vet appointment went well. I pick my sister, Leah and her girls (ages 3 and 5) up at their house and head back home. When we get home, I resume my spot on the couch and rest for a few minutes before calling the groomer to set up an appointment for Otis who's looking very shaggy these days. I don't feel too bad at the moment, but I know that won't last long.
The kids are all wound up and very loud. Every sound feels like someone is dropping a jar of marbles inside my brain. I get up to strip bedsheets so they can be washed and do a few other things from my to-do list.
I'm. So. Exhausted. I started the washing machine, refilled everyone's pill boxes and medicine bags, organized our latest pharmacy haul, paid the bills, and did my Physical Therapy exercises. I work on blog-related stuff with my Chromebook on the couch while Leah cleans the kitchen for me.
I leave for parent-teacher conferences while Leah stays at the house with the kids. I get a good report from Katie's teacher, but not so great from Nano's. His teacher and I have been in constant contact through email over Nano's behavior issues lately so it's no surprise to me. While I'm at the school, I meet up with the Early Childhood Special Education teacher to sign Davy's IEP paperwork so he can start preschool. His first day of school is scheduled for March 20th. The fact that my baby boy is starting preschool so soon is a little nerve-wracking to me, but I know he'll love it and how good it will be for his development.
I'm home again! While I was gone, Katie, Nano, and Leah's boys (ages 9 and 6) arrived home on the school bus. Leah informs me that Katie has had a bad attitude since the moment she walked in the door. I call Katie into my room so I can have a one-on-one talk with her about her attitude to see what's going on with her. She leaves the room in a much better mood, and I close the door behind her to finish working on my blog for the day. Leah futilely tries to keep all eight of the kids quiet so I can work.
I emerge from my room with less work accomplished than I had hoped thanks to the high noise level in the house and my brain fog. I ask Leah to make supper for all of the kids and feed them while I clean the boys' room and the living room.
Leah and her kids leave, and I start the bedtime routine with my kidlets. Instructing the three older ones to get their pajamas on, I lay out Davy's skin care creams and ointments and begin checking him head to toe for current and new eczema spots that need treatment. Davy hates his skin care routine because it's often painful for him so I have to distract him with youtube videos on my phone to get him to lay still. I use a strong steroid ointment on the worst spots, a different steroid cream on the lesser ones, and then coat him with a thick layer of Vaseline and then finish with a layer of Vanicream before zipping him into his footie pajamas for the night. Because the eczema on his hands is worsening again, I put a pair of Handsocks on him to protect his hands and keep him from rubbing off the ointment and vaseline on them.
After finishing with Davy, I dole out inhalers and pills to everyone but Anna (who thankfully has seemed to escape the family curse of Ehlers Danlos Syndrome and asthma thus far). The two older kids got ready for bed while I was working with Davy, but Anna is still hanging upside down in the rocking chair singing at the top of her lungs. I get her ready for bed and start herding children into their rooms.
The kids are all in bed, but none of them are sleeping yet. I start some raisin bread french toast and sausage patties for Hubby's and my supper and then sit down to watch Netflix until he gets home from the farm.
Hubby arrives home and we sit down to eat supper together and watch a little tv before we head to bed. I fall asleep almost as soon as my head hits the pillow despite the intense pain I have in my legs and hips from the activity of the day.
A day in the life of a spoonie momma: http://bit.ly/2mlsDHc
--------------------------------------------------------------------------------------------------------------------So that's what my days often look like! In my Sunshine and Spoons Group and Spoonie Mommas Group, I asked if anyone had any questions about my daily routine and here's what I got:
How do you handle sleep deprivation? My 2-year-old has Laryngomalacia and Hypermobility. He is sick and the last 2 nights, he hasn't slept because he panics when he can't breathe. Coffee isn't cutting it. I need a nap. -Karise
I feel your pain, Karise!! Anna has never been a good sleeper, and Davy barely slept at all for his first year. Between the two of them, they still sometimes get me up several times a night. On the days when the sleep deprivation is hitting me hard, I go into survival mode. Caffeinated drinks (even though I know they're not healthy), getting naps in whenever I can even if they're only a few minutes, and taking it easy are how I survive those days. If the only way I can get my little one to sleep is laying on my chest, I sleep in the recliner until they're feeling better. My philosophy is, do whatever it takes to get as much sleep as you can and don't worry about creating bad habits. When they're feeling better, they usually start sleeping in their own beds again on their own.
How do you make meals? What about appointments, how do you keep track of those and how do they affect a day? What if you're not feeling well? How do you manage to blog/work? How do you find one on one moments with your kids and husband? -Lisa
To start with, I make meals as simple as possible. Most of what I cook are easy dishes that only require me to dump a few things in a pan and shove it in the oven. Any more than that and I end up using valuable spoons.
We frequently have doctors appointments at the clinic 1 1/2 hours from our home. When we do, we're usually gone most of the day, and so the house is neglected. I try my best to remind myself that it's okay and the messes and laundry can be dealt with the next day. I carry a day planner everywhere I go and write down all of our appointments in it. Someone asked me why I don't just use the calendar on my phone, but I spend so much time on my phone with my day planner in front of me scheduling appointments that that's just not possible for me. I also use this medical binder to keep all of our medical information organized.
On the days that I'm not feeling well (of which there has been an excess of lately), I take it easy as much as possible. The kids might spend a little more time playing on their own while I lay on the couch and try not to pass out and they eat a lot of peanut butter and jelly sandwiches on those days. I hate it, but it's my family's reality and it's all about survival. If we have appointments on a day I'm not feeling well, I try to have someone else along who can help with the kids, and I use my walker to get around.
Blogging and writing for the newspaper are the perfect jobs for someone with my physical limitations. Even when I'm exhausted, I can usually sit and type on my laptop.
One-on-one time with my kids and husband is something I work hard to find. Hubby and I usually eat supper after the kids have gone to bed and then have a prayer time together. For the kids, if only one of them has an appointment, I leave the rest with a babysitter and make it "our day" so that it's special for that child.
How do you keep God as your strength and help and not keep going back to being mad at Him for allowing you to have to go through all this? -JulieAnn
This is definitely an ongoing process! I think for most special needs moms or those living with chronic illnesses, there's a constant grieving process that they are going through. One day, you may be okay with everything and the next day, something hits you and you're angry again. I just keep the communication lines open with God and remind myself that even when things seem bad, He is always there and loves me so much that He watched His only son die a horrible death on the cross to save me. I know firsthand the depth of love that a parent has for their child so that really speaks to me.
If you're a spoonie momma too, I'd love for you to join the Spoonie Mommas group on Facebook! It's a place where you can vent, ask for advice, help out another momma, and make new connections.
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