Archives For raising children while living with lupus

A Spoonful of Grace

November 21, 2015

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There are some weeks where I feel like I am just winning at life! I’m sure my fellow moms out there know what I am talking about. I manage to get all the laundry folded and put away, I’ve cleaned the entire house, cooked and cleaned up the kitchen daily, taken care of any miscellaneous errands/chores along with homeschooling and spending quality time with my boys and husband. When I have weeks like this I seriously do feel like I am on roll, finally in a good groove and being a great mom and wife.

Then there are the weeks where the laundry is piled up. Sometimes it’s that I can’t get to the laundry so it’s waiting to get washed, or (like right now) it’s clean and in a pile on the couch. If I’m really lucky then it’s clean and folded sitting on the piano in the living room waiting to be put away. Clutter is everywhere, toys everywhere, I need to clean, honestly the kitchen is driving me crazy! Am I the only person whose kitchen seems to be the catch-all for everything? It’s like we come in the from garage and that’s as far as everything goes, right to the kitchen counter. Ugh! And the dishes, OH the dishes! Do they ever end? I don’t know what I would do without that dishwasher!?! But I just need to find five minutes in my day to load that said dishwasher.

When I come off of a week like this I feel like I am definitely not winning, let alone even doing a half decent job at being a wife and mom. I mean how can I have one week where everything goes so smoothly and I get everything done on my lists along with plenty of fun things for the kids and I to do, just to have the following week be the exact opposite of that. It’s not even like I did anything differently, yet somehow there wasn’t enough time in the day to do everything. I’m not a mathematician, but I’m pretty sure that I have the exact same amount of hours in every day. It just doesn’t add up to me that one week I’m winning the race and the next week I’m in the back of the race sprinting trying to keep up.

I just finished reading the new Jen Hatmaker book, For the Love. (If you haven’t read it, you should stop what you are doing and order it on Amazon because it is wonderful!) This book was perfect, I felt like she was literally talking right to me. It’s all about grace, and the most important part I took away from it is giving yourself grace. We can NOT do it ALL! I repeat we can not do it all! And guess what… that’s OKAY! What? It’s okay that I can’t do it all and that I might need some help? Yes, we are only human. Some weeks I might have less energy than other weeks due to my lupus, so the laundry might just have to wait until the next day, and guess what… it’s okay! Also, it’s okay to say no and put your time and energy where its most important. Do the dishes later that night and go play a game with your kids or read a book together. Give yourself permission to embrace this time and not get bogged down by the chores and chaos of the day. Ask for help when you are having a day or week where you feel overwhelmed. I don’t know why I can have such an easy and productive week when the next week makes me feel like a failure. The only explanation I have is that we are human, not super heroes and some times that’s just the way life goes. Give yourself some grace because your kids and your husband love you, they aren’t worried about the dishes in the sink. It’s all about grace, give yourself some. It’s okay!

My forever accessory to life

My forever accessory to life

When my face is rash free, my joints are treating me nice and my fingers don’t go crazy white I can forget that I have an illness. Mostly when I have had weeks and even months of feeling better than usual. The thing about Lupus is that majority of the time it doesn’t show through on the outside. I look just like everyone else, I seem to be healthy but reality is far from that. There are times when I look into the mirror and think back to that moment I heard “You have Lupus” and find myself doubting those very words. Could it really be true? I have felt so good lately. I look okay. Maybe it was all in my head. But those thoughts come to a sudden jolt when I am reminded of my disease every day by my twice-a-day pill organizer. What twenty-something has a pill organizer? Just those that need one..

The truth is I am not in denial of my diagnosis. I’m actually okay with it. But sometimes I find myself looking and feeling like I used to and then everything becomes surreal. When I actually stop to think about those words “You have Lupus” it’s hard to believe. Not because I wish it weren’t so or because I fear what is ahead. It’s hard to believe because who thinks that they will have their world altered by words like that? No one. I seem to be healthy, and sometimes I even feel that way. But then I get reminded of just how invisible this illness really is when I wake up with achy joints and the beautiful butterfly rash to accent my face for the next several days and my stark white fingers that are my winter accessory. Truthfully it’s as simple as this… I don’t think about my disease all the time and if I am having several good days in a row I forget about this part of my life, that I have Lupus. But, I think that is a good thing because it’s pretty great that people don’t see me and see my illness. I will talk to people about it with all honesty, but I like knowing that it doesn’t have to be me. I think it’s okay to forget about your diagnosis because every day when I take my morning and evening medicine that is enough of a reminder. I don’t need to dwell on it.

I do not fear what is ahead. Rain or shine, God Has plans far greater than mine, and that includes my disease!

I am not patient. But lately I am finding that God is teaching me this very difficult lesson. There are so many dreams I have for myself and our family that I truly believe are dreams instilled in me from God. Sometimes those things just don’t happen overnight. In fact, that is usually the case! With the world of instant gratification the idea of waiting is unthinkable! Patience, who has time for that? I’ll just zap my food in the microwave and my “baked lasagna” will be ready in less than 3 minutes! Why on Earth would I actually bake my lasagna in the oven for half an hour? Patience! Ha! Do we even know what the world actually means?

Dictionary.com defines patience as the quality of being patient, as the bearing of provocation, annoyance, misfortune, or pain, without complaint, loss of temper, irritation, or the like. An ability or willingness to suppress restlessness or annoyance when confronted with delay.

Go ahead and make an entire meal from the microwave! Why wait an hour?

Go ahead and make an entire meal from the microwave! Why wait an hour?

I’m pretty sure that our microwave zapping, instant streaming, world in our hands by the touch of an iPhone generation doesn’t have much of a chance! And I am right there with the rest of the population. If my iPhone is taking a hair too long to upload a page I’m annoyed, don’t even get me started when there are three commercials on Hulu instead of just one! Speaking of commercials, my child doesn’t even know what they are! We don’t have cable. Instead we bought Netflix and Hulu, made our lives cheaper and no commercials! The first time he experienced the world of commercials he was at his Aunt’s house and the Mickey Mouse Club House was rudely interrupted by a commercial. He energetically let out “I want more! More Mickey!” This continued until the show came back on. Little did we know getting rid of traditional cable would make my child impatient! It wasn’t our intention, I promise!

I’m not sure about your family, but we like to dream big! Chase and I will be driving down the road and one or both of us will start dreaming of having more children, when we can take a big Europe vacation, update our kitchen, get a second car, Chase’s businesses grow even larger and I write full-time. Our list of dreams go on and on. Here is what I am learning, rather slowly, these things might actually be our future but they won’t come easy and they won’t come with the push of a button. Sometimes we have to patiently wait where we are, work hard and enjoy the blessings of our current circumstances because as long as we are following God’s path, the blessings are sure to follow! This is something that I am having to remind myself of more often than not. I see what we are working towards, the steps we are taking and the amazing benefits of our sacrifices to get where we are wanting to go. But I still struggle with the microwave mentality. Can’t it just happen now? I’m trying daily to overcome this awful mindset because I know that when you are so focused on what you want someday, you miss out on the amazing of today! And I don’t want to miss out on the blessings of my here and now!

About a year ago I created The Original 30 before 30 list. Through the year I second guessed some of the items that I had on my list for one reason or another. I had put several items on about going green and I really wanted to focus less on the things that interested me at the time and more on goals, plans and things for the future. I also mentioned having two more kids. With my Lupus there is just no telling. God might give us two more children or He might decide that we are meant to only have the beautiful baby we already have. I am not putting a magic number on our family anymore, we will be given the family that we were meant to have!

I know some of you might be saying that once I finalized my list there is no changing it. That was how I felt at first. Then I decided that it’s my list, filled with things that I want to do… so I can make whatever changes to it that I want because it’s for me in the first place. I hope you enjoy my newly refurbished 30 before 30 list!

30before30 new

1. Grow my hair out to my waist
2. Get my family tattoo
3. Finish my novel
4. Participate every year in the “Walk to end Lupus Now” event
5. Get Lasik eye surgery
6. Take a baking/cake class
7. Start/get involved with a ministry to teach people to transition to a green life
8. Paint our kitchen cabinets
9. Be debt FREE!
10. Plant a vegetable garden
11. Finally go skiing
12. Create my own pie recipe
13. Hang pictures from Chase’s documentary
14. Go on a family vacation to California
15. Read 30 books
17. Go parasailing
18. Pay for a strangers meal at a restaurant
19. Go on a train ride as a family
20. See a movie at the drive-in (I seriously have never done this)
21. Find my favorite brand of all natural make up
22. Try a really fancy bottle of wine
23. Go on a trip out of the country
24. Go to a dinner show
25. Take a spontaneous family day trip to new places in our home state
26. Finally decorate our bedroom
27. Finish scrapbook (you seriously have no idea how long this has taken me!)
28. Actually start and complete a knitting project
29. Watch and stay awake for the entire movie, Stand by me (I have attempted and failed twice)
30. Play Christmas carols for a family sing along on the piano

To all the Moms, Happy Mother’s Day!