Before getting this ridiculous condition, I had four very active kids with crazy sports schedules and a social calendar that probably matches that of Justin Beiber. And guess what? After I got sick, they still had the same activities and social life. Whether I’m well or unwell, life doesn’t stop moving at it’s radical pace, especially when you’re a parent.
This was probably the toughest part of my life after being diagnosed with a debilitating illness. I tried to keep up like I could when I was “healthy” but I just couldn’t. I felt like a total failure as a parent. I was discouraged and frustrated…. and unwilling to ask my kids to change their plans and alter their dreams for me. So this is what I did:
Think of your fellow mom friends as a force for good, like transformers if you will. Mombots unite! It is only thanks to the amazing moms in my life that my children have been able to have a fulfilling summer and a great start to their school year. These moms have taken my kids with them on outings, taken them to football practice, and have taken them under their wing to love as their own. Did I ever expect it? Absolutely not. But I am an extension of my fellow Mombots and we work together. I do for them as I can and they do for me as they can. Be a community, a village with your group of Mom friends. It will create a solid bond and enrich your life and your child’s. It’s OK to ask for help!!! Don’t let your illness be some big secret. Your mom friends, your true friends, are going to be there for you! I am unafraid to ask my Mombots for help, and they are unafraid to ask of me. It takes a village! <— If you’re not familiar with that saying, Google it. The bottom line is, we are not in this alone.
(This particular post is dedicated to my Mombots. I love you and appreciate you more than I could possibly put into words. Thank you Gina, Melissa, Madonna, Jill, Tammy, and Olivia)
So, does anyone else besides me go into full on panic mode about two weeks before school starts?! We are going from a go-with-the-flow, easy going summer …. to chaos. Back to school shopping in crowded stores, Open house events, registration, and don’t even get me started on the anxiety I’m having about have to actually be up early every morning and get my kids to the school bus on time…in clothes…and fed…and maybe brushed hair. I think I may be hyperventilating a bit just while I’m writing this. Having a whacky medical condition on top of it all just isn’t helpful.
So, this year I’ve done a few things to help prep myself for my kids going back to school:
- Online back to school shopping. Thank you Amazon for making my life so much easier. I can’t even pull up to a Wal-Mart during back to school time without needing to breath into a paper bag.
- My kids can eat breakfast at school. I used to feel guilty for not having a great breakfast ready for them before school but in true “me” form, I always just ended up throwing pop-tarts at them as they were headed for the school bus anyways. If your childs school offers breakfast, take them up on it.
- Night-Before Prep. I have my kids set out their clothing, school bags, lunch boxes the night before school. This saves me the hassle of frantically looking for underwear and socks in the morning, and I get about an extra 10 minutes of sleep….and I need every minute of it.
It’s almost 11am on a Monday morning when my doorbell rings. Crap, I forgot that somebody was picking up some bedding I sold on the local trading website. My kids are still miraculously asleep and I’ve been in and out of sleep for hours because my body is in total retaliation mode today. I get up to go get the door, still in my pajamas and with my hair all a bedhead mess. As I open the door my two little dogs run out to chase down the, very well put together, neighborhood mom group that goes walking every morning. As I waddle over to them looking three shades of crazy-lady, I’m totally embarrassed. I gather my dogs as searing pain runs up my spine and turn away from them with my head down and an embarrassed smile. I get the dogs in the house and the bedding lady squared away and then drag myself back into my bed. It’s now 11:15am. Guilty thoughts roll through my mind. I should have had my kids up and made them breakfast by now. Who’s not wearing a bra by noon?! Did those other moms gawk at me after I left? I’m judging myself and making the radical assumption that others are too… and then it hits me:
- How Blessed am I that I can be in bed in my pajamas at 11am on a Monday morning when I don’t feel well.
- Whether disabled or not disabled, every mom has her #hotmess moments. Maybe it’s not so bad to be a public example of being a mom that doesn’t “have it all together all the time.”
- I shouldn’t be so hard on myself. My kids slept in. When they got up, I made them breakfast and then crawled onto the couch with them to snuggle up. I’m in pain and I don’t feel well but all my kids know is that they get to have snuggle time with Mom.
- Other people may judge me, or maybe they don’t… But the one person that shouldn’t be judging me is me. I’m a total #hotmess , but I’ll never stop trying to be the very best mom I can be with the circumstances I’m under. What more can we ask of ourselves than that?❤
They’re so cute aren’t they? Those big eyes, that innocence. They’re just angels to watch sleep… but then it’s play time. You venture out of your home in hopes of a lovely time only to find yourself in a panic when they all start to scramble….. and I’m not talking about cats… I’m talking about the children.
“Where did Junior go?!” “Katie how did you get up there?!” “Jonathan, what are you covered in ?!” It happens in a split second, and like a turtle in the mud, you are left trying to herd your cats, err, children back together.
Parenting is an adventure when you’re not chronically sick, add that mess into the mix and it becomes less of an adventure and more like going into combat. You’re chucking spoons right and left and before you know it, you’re out of spoons and the fun has just begun. So, how do we survive said outings with the children? We can’t just keep them in a bubble just because we’ve got some weird chronic illness right?
Here are a few things I’ve learned about surviving outings with the kids:
- If they’re under four, just stay indoors. (I only say this because I was not sick with little ones, going to have to get a guest blogger for that one. haha)
- Take reinforcements with you. Bring your hubby, a babysitter, your BFF, whoever, but have someone there that can help you keep and eye on and lasso in the children.
- Have your children check-in frequently. If you’re somewhere with kids old enough to venture about on their own a bit, make sure they know they need to check in with you at specific times. That way they are finding you and not the other way around. If they do not show back up, have them paged over an intercom (this never embarrasses them at all.) *Loud Speaker* “Susy your mother is waiting for you in the feminine products isle. please meet her there.” – bet Susy won’t miss that deadline next time😉
- Set perimeters. ex. – “Joey you can play in this area but do not go past the swingset, etc”
- Set specific time limitations, not just for your kids, but for yourself. How many spoons is this trip going to take? Make sure you have enough left over for the rest of the evening. Maybe you used to go to the park for 3 hours and now you can just go for one. That’s ok! Just make sure the kids know how long you’ll be staying so they’re not so disappointed when it’s time to leave.
- Remember snacks…pretty much the most important thing to remember here.
This is a photo of my super awesome kids and I during my most recent hospitalization. I was in the hospital for 17 days and missed my daughters cheer competition and my boys’ football games. As a mom, this was the most difficult part of my whole hospital stay
Some of us with Autoimmune/Neurological diseases endure long hospital stays due to relapses/flare ups of our conditions. Since 2014, the onset of mine, I’ve been hospitalized many times with those stays lasting anywhere from 5-17 days. If I’m “lucky enough” not to have to be in the hospital during a flare up or relapse, I’m stuck in bed for days on end, often times hooked up to an IV and getting home health care.
Point blank: It sucks. So, what do you do when you’re a parent and you’re stuck in the hospital but still have the undying need to show your children you’re still there for them as there mom? Well, here are a few things I’ve done.
- FaceTime. Technology sure comes in handy sometimes. While I was in the hospital, a my sister went to my kids’ sports events and I watched them live using FaceTime. I even got to FaceTime with them right after the even to congratulate them and let them know I was there watching and I’m so super proud!
- When they come for a visit, don’t just sit around wallering in sadness. Do something fun! Have them bring a game they like to play, color with them, play toss the ball in the bedpan (personal fave).
- Don’t be afraid to let your kids see you sick. Do not keep them from seeing you just because you may be hooked up to machines, haven’t washed your hair in a week, and you look like crap. Put a hat on, throw on some lip gloss, and see your kids…because they really want to see you, no matter how well or unwell you are.
It was a beautiful day with big plans. The kids and I were going to go see “Finding Dory” (I think I was more excited than they were). Afterward, we were going to go get Smoothies at our favorite spot and then go on a picnic. We were all excited.
About halfway through the movie, I started feeling really unwell. Not like “I’m coming down with something” unwell, like, oh crap, my legs are very heavy and I’m feeling very weak, unwell. By the time the movie was over, I could barely walk out. I was having a flare up that I was praying wasn’t turning into a relapse. Our plans stopped there. I had to call the kids’ dad to come get them and then I was stuck in bed for 4 days waiting for it to pass, praying I could just stay out of the hospital. The kids were, of course, disappointed. By now they’ve gotten used to the instability of my condition…but that doesn’t make it easier on me. I felt like I’d ruined our day.
Parenting with f#&> flare ups: A few things I’ve learned:
- You don’t have any control over them. You know this but do you REALLY know this? YOU DON’T HAVE CONTROL… So, when they happen, at the most inconvenient times ever, forgive yourself for having to stop dead in your tracks and take care of you
- Kids are kids. It you have a fun day planned and plans get altered, they’re going to be disappointed. You don’t have to feel guilty about that. Let them know that you understand they are frustrated, and as soon as you are feeling better, you will go do what you had originally planned
- DO NOT, let me repeat DO NOT just try to push through a flare up just so you don’t have to break plans. Even when you hate your body, respect it for giving you at least enough warning to get your bum back in bed.
School is out and summertime is here. The kids could not be more excited, and before this dumb disease struck me, I couldn’t be more excited either. I’m adapting, as we all do to my “new” body but sitting in the house, as not to avoid a flare up from the heat, while my kids are outside playing is not exactly what I had in mind for spending a quality summer with my kids. The kids want to run, play, swim, hike, camp, go to the beach, and go, go, go, as kids do…and what my kids were used to before I got sick. So… how do we have summertime fun without fearing relapses and flare ups?
Here’s a few tricks to beat the summertime blues:
- Water Parks: My kids are old enough to be turned loose in the water park. I stay in the lazy river with my big hat on. The water keeps me cool in the heat and the kids get to ride all the fun stuff! (We did season tickets this year. Worth every penny) Win Win.
- Movie Day: One sure fire way to beat the heat. Once a week have a movie day! Pop popcorn, have a candy station, let the kids lay blankets, and pillows all over the floor, and watch a movie together.
- Arts/Crafts: I’ve got one word for you: Pinterest. I have found so many awesome projects to do with the kids over the summer. We do an art/craft once a week. It’s something we can do, inside with the cool AC blowing, and they have a blast.
- Allow the kids to spend time with others and don’t feel guilty for not being there. I’m Blessed that my kids all have awesome friends, and their friends’ awesome families to latch onto a bit during the summer. They get to go do things like camping, parasailing, skating, boating (can you tell we live by the beach?). Sure, I’d love to go but I simply cannot do some of these things. My kids get the awesome experience with great friends, and believe me, they’re not spending a moment wishing I was there.😉
- Know your limitations and take time for you. It’s easy to get caught up in the whirlwind of summertime activities when the kids are out of school. If you napped every day during the school year, find a way to make it happen during the summer too. Your health is the highest priority because we can’t be super awesome parents if we get ourselves in a big mess of a flare up.
Any of you who know me know how I feel about this magical machine of vacuum sucking, robotic glory. I bought myself one for my Birthday this year and when it came, I literally cried like somebody had just presented me with a new car or free vacation to Maui. Why was I soooo excited? Let me tell you! I hate vacuuming. I know “hate” is a strong word, but I’m using it!!!! Vacuuming sucks the life out of me (pun intended). It takes up the MOST REDICULOUS amount of energy when I’m already dealing with fatigue. Moms and Dads with chronic neuro/auto-immune conditions, STOP DRAINING your day with cleaning. If there is anything that you can do to reduce the amount of cleaning you have to physically do, then do it!
- Buy one … NOW
- If you cannot afford one, start a Roomba fund.
- The first time you vacuum your house with the touch of a button, it may be THE MOST exciting moment of your life. You might even consider a bottle of Champaign for the occasion
- Whatever you can do to reduce the amount of energy you spend on daily tasks, do it. Save your energy for your kids, for the things that are important like reading books, doing homework, coloring, and all the amazing and wonderful memory-making activities we can do with our children when we don’t let house cleaning steal away our precious energy❤
“Mommy, am I going to get sick like you?” – When my, then 8 year old daughter, looked up at me with fear and confusion in her eyes and asked me that question, my heart just sank. It was the first time I’d realized that my kids might have the fear that they too would develop this rare medical condition that they have watched me suffer through. It’s a validated question and one we have to handle with fragility. Acknowledging their fear is important! Here are a few tips on how to handle this question, which your child will probably inevitably ask if she hasn’t already done so:
- Say, “Don’t be silly honey, of course you won’t” – This invalidates their feelings. They do not believe their question is silly and neither should you.
- Dismiss or ignore the question – Again, this invalidates them and may cause more anxiety if they feel you are “just not wanting to tell them the truth.”
- Tell them they are genetically doomed to get some horrible disease because your entire family seems to be plagued with one horrible condition or another – We don’t want our children living in fear of becoming sick or disabled.
- Validate their feelings, “I know that you must be scared of going through what you see me going through.”
- Give them assurance with a confident answer, “My medical condition is very rare. It is not something that is passed down from parent to child.”
- Educate your child about your medical condition! Knowledge is power! You don’t need to break down the anatomy of the brain or spine but you can use terminology they will comprehend to help them better understand your disease. (My 14 year old has become my biggest advocate and is proud to know so much about this condition!)
My moment of truth; I never liked roller coasters to begin with, so using the excuse of having TM/MS has worked out really well for me. I also don’t like heights, anything that moves to fast, or spins. I’m pretty much the lamest person ever to take to an amusement park. BUT, if you used to be that super cool parent who rode every ride with your kids and are now suddenly stuck holding everyone’s backpacks while they go due to your auto-immune/neurological condition, I could get where you’d feel frustrated and left out of the fun with your kids. Since I’ve always been the backpack holder, this was easy for me to write about…
Here are some tips for being the most fun parent on the ground!
- If you are a cool enough of a parent to take your kids to an amusement park, you’re cool enough. Your kids are so thrilled to be there and they are just happy you’re the one that took them!
- Take this opportunity to be the best ball tossin’, gun totin, ring throwin’ parent at the park. That’s right! You get that giant unicorn for your kid and you’ll be THE coolest parent EVER! (we have had brought home enough carnival gold fish to start our own aquarium)
- Yeah the rides are fun but the fried food and overprices lemonade is where it’s at! In the midst of all the chaos, have a nice sit-down meal with your family. The fact that you were able to all be there together is what makes the memories for your kids. Trust me, I’ve never been on a single ride with my kids, and it hasn’t made them love our vacations to the amusement parks and less fun and memorable.