Out like a Lamb; Onward to April Showers

Here we are.  Already 1/4 of the way through 2018…can you believe that?! Even as I typed that sentence, I had to re-count the months in my head (and admittedly, out loud & on my fingers, like an elementary student might do) numerous times! I can hardly fathom how fast, and yet how dreadfully s-l-o-w, this year has gone so far. (Isn’t it so strange how that can happen? How the individual days can drrrrragggg on, and yet the months & years can fly by in the blink of an eye!)

For anyone who has read my past posts, or has been following along the whole time (thank you SO much for reading!) you all know that when we found out towards the end of January, 2018 that our darling Evrett has very rare abnormalities in the white matter of his brain, and 2 anterior temporal cysts, I also vowed to begin a new chapter of MY life.

On the day that we saw the neurologist and our geneticist, when they revealed to us what they strongly believe Evrett has (an extremely rare genetic disease called RNase T-2 Deficient Luekoencephalopathy), that was also the day I vowed to make a change in my own self. As Scott took Evy for additional bloodwork a few hours later, I was resigned to driving circles around the hospital so that our darling baby daughter Lydia (at the time only 7 months old) would actually snooze (there was no way in hell she would sleep if that vehicle didn’t stay in motion!), and I was listening to Gretchen Rubin’s “The Happiness Project” audiobook through the bluetooth in our vehicle. (If you haven’t read this book, I absolutely suggest you do so!! It will change your daily life…without having to drastically change your life in general) It finished just as Evy & Scott finally came running out of the lab at Manitoba Clinic; I knew that this would mark a difficult new chapter in our family life, and I also knew that I needed to start taking better care of ME so that I could better serve my darling Evrett with his unique needs, and our other 2 angels as well.

So what did I do? I began my very own Happiness Project!! (And if you would like to read more about HOW I began this project and planned it all out, please check out my initial post about it here ) Some may wonder WHY I chose that very time to undertake this overhaul of my daily life…hell, even I questioned if I was in the right frame of mind at that time to make any decisions at all!! And yet, I am so glad that I followed my instincts, because these seemingly small changes to my daily life have made MASSIVE differences in our basic level of happiness as a family. I am somehow more content with who I am than ever before, and more equipped than ever before to handle what life throws our way on Bugs’ journey.

With that said, let’s take a peek at how month 2 went…drumroll please! My March resolutions (there are 5 each month, with the previous months resolutions carrying forward continuously) were: 1.) Schedule Time To Play-which meant scheduling time each day to put everything else down/away, and play, laugh, and goof around with my darling little ones. And you know what? I did it. Every. Single. Day.! (Score!!!) 2.) No Amazon-I had realized that shopping on Amazon had become a bit of crutch (much like Lululemon once was for me), so I resolved not to shop on Amazon during March. Did I make it 31 for 31? Nope. BUTTTT, I DID make it 25/31 days!! And when I caved and clicked “buy now”, it was always for needful household items, nothing superfluous, so I’m pleased with that.  3.) No Fake Food or Gluten–this resolution was a result of reading a few books and articles about exactly how the food we eat impacts our bodies, and after reading Gray Taubes’ “Why We Get Fat, And What To Do About It”, I decided to AVOID processed food, most carbohydrates, fruits/veggies with higher glycemic indexes, and refined sugars. This change has been so freeing for me!! I finally eat more protein in a day, more veggies, and overall just eat more healthfully. AAAAND I am less hungry, feeling almost no need to snack in the evenings. Also, that 2-4 PM sugar crash I felt for years? GONE!  So yup, I stuck to that with minimal effort 25/31 days, and I look forward to keeping it going in the long term. 4.) 10 mins of Spirituality: I spent 10 minutes per day reading books by the Dalai Lama, because for about 5 years now I have been strongly pulled towards the philosophies of Buddhism. I am SO glad that I dedicated myself to that studying, because I am more sure now than ever of what my spiritual beliefs are. (Do I need to label it yet? Nope. I am still becoming. But the important thing is that my mind & heart are open to my spiritual path now, whereas for much of my life, they had been quite closed off and skeptical.) I missed only 2 days of this out of the 31 days of March.  5.) Try to Say YES–this had to do with anyone in my life, but mainly my children & husband. If my kiddos asked to do something, I tried to say YES. If Scott expressed that he would like to do something, I did my best to say YES. If a friend or family member asked for something, I tried to say YES. I put extra effort in to accommodating what someone else needed over myself. And you know what? I easily got gold stars for all 31 days of March. Funny, I had thought I might do the poorest at that resolution, because I can be quite rigid about my routine (my routine helps me greatly in my anxiety recovery, and in giving my best to Evy and Cody & Lydia)…but this month showed me that I can STILL stick to my routine, and yet adapt it in subtle ways when necessary to say YES.

March came in like a Lion, with our lab here in town screwing up the containers for Bugs’ blood tests (making the genetic test INVALID!) and went out like a Lamb, with a lovely Easter family supper tonight at my parents. (for my 2nd months happiness resolutions, click here )

They say that “April showers bring May flowers”….so, what are my resolutions for April?

1. Buy NOTHING. : Yup, you read that correctly. Other then the ESSENTIALS (we can’t function without groceries, toilet paper, etc), I intend to buy absolutely nothing else during April. You may be asking what if an emergency arises, and one of us truly needs something we didn’t plan ahead for? Ok!!  Of course I’m not going to take any of these resolutions to some sort of extreme, or to the detriment of our family well-being. I’m talking about not buying ANYTHING beyond what we essentially NEED to live on. (Oh, and FYI, Wine is definitely an ESSENTIAL in this house, so that totally doesn’t count 😉 This mama needs to chillax once the kiddos are down at night, and there ain’t no shame in that!!)

2. 1,1,1: I honestly have the greatest partner I could ever ask for. Now, now, you may be saying: “oh yuck, come on, no one is THAT perfect?!!” And you would be right, because no one is perfect, and I’m not saying that he is. BUTTTT….are there many people out there who could work super hard at their jobs (with a smile still on their face), put in extra hours expecting nothing in return, come home and give their children lots of 1-on-1 attention, and do all the extra things that life demands (such as shoveling and cleaning cat litter)….all without so much as a frown coming to his/her face? I don’t think so. (I know that I certainly woudn’t be so kind!) Oh, and he still hugs & kisses me, tells me he loves me, at least 2-3 times a day (with zero nagging!). PLUS, to do all of this while parenting a child with special needs?!! Um….yea…he’s pretty damn amazing. So my 1,1,1 rule is for our marriage. I plan for us to sit down together 1 time a week for a “marriage meeting”, when we can touch base not on how Evretts various therapies or development are coming along, or how the other babes are doing, but on how WE are doing. Because you know what?-our marriage needs attention too! We can’t give and give and give to our little ones, and do our best, if we are trying to pour from an empty cup. Once a week, we will have an at-home-date-night: that could be simply a movie on Netflix and popcorn (which is seriously our FAVE date!!), or maybe something more planned out like a game night with friends for a double date. And finally, once a month, we will GO OUT. No kids. A babysitter/respite worker with Evy. Just he and I, out for supper, ALONE. So that we can actually be US. If we want to let out our emotions about Evrett, or our other angels, we can. But if we just want a chance to be SCOTT and LACEY, not “mommy and daddy”, this 1 night a month will be our chance. Just for an hour or 2, but it will be wonderful for us.

3. Enter the Room: I’ve noticed that all too often, I have turned to raising my voice, or worse yet yelling, from another room when I need one of the kids/Scott to do something. “Cody, could you turn that off?!” “SCOTTTT, please pick her up!!”…it’s annoying even to ME!!! So how do I think that feels for my husband and children?!! DOUBLY ANNOYING, I bet!! No more. From now on, if I have something to ask or say, I can stop what I am doing for 30 seconds (because, afterall, 30 second makes no damn difference) walk in to the room that they are in, and say what I have to say. I think it will make for a happier atmosphere for all of us.

4. Put the Chart in Charge: recently, a good friend told me about a device/app called “Disney Circle” that helps parents monitor and control their children’s use of the internet on various apps. I thought this sounded AMAZING! And I’m sure it IS amazing…..however, as Scott pointed out, none the the games or apps Cody or Evy enjoy actually use Wifi….so Disney Circle wouldn’t serve us very much right now. I was bummed right out, because I thought this Disney Circle thing might actually reduce some of the policing I have to do in the house in terms of iPad usage (especially with Cody), and now I will be on my own, manning the gates and taking the heat, yet again. Indefinitely. So Scott and I discussed, and we decided we shall buy another white board to mount on our dining room wall. This white board will display all of the prerequisites for Cody, Evy or anyone getting “device time”: such as checking off various chores, spending time outside, finishing homework, etc. We will also agree on a mutually determined amount of time per day “on devices”, and the stove timer will be set to keep track. Cody will be part of the decision process, he will get to help make the rules, and it SHOULD reduce arguing in the house about device time. No longer will mommy be the “bad guy”. The CHART we make on the white board ALL TOGETHER can make the rules, and be the “bad guy” when need be 😉

5. 10 mins of Parental Development: I loved dedicating 10 mins a day to learning about spirituality in March. And for April, I feel that dedicating 10 mins a day to parenting is meritted. I can use all the ideas I can get about how best to get across to Evy, with his unique brain function. I also need all the help I can get with our nearly 7 year old and his strong-will. PLUS, our 9 month old baby girl Lydia is her own force to be reckoned with! So, with 10 mins a day, I can explore different books and resources to keep my inspiration and ideas on parenting FRESH.

1 year ago today, on Easter Day, I was in major pain being 7 months pregnant with Lydia, and all of the surgery & procedure scars feeling like they might explode. Today, we stood for a picture of the most complete family I could ever have asked for. So, if this Happiness Project of mine will help me to be the best mother I can be, the best wife that I can be, the best friend that I can be, and the most CONTENT with my own self that I can be? Then it is more than worth it.

As Gretchen Rubin and Liz Craft say in their “Happier” podcast: Onward & Upward

 

~If anyone out there has supportive comments or suggestions for my posts on Evretts journey, or if you are simply a parent of a child with unique needs and want to connect, please comment!! Or click “follow”. Thank you.