I crack up at goals because
reaching even setting goals is challenging in this season we are in. I don’t remember the last time I have. But, I really relate to Hayley over at thetinytwig when she shares her struggles. I am encouraged, though, because I can still set goals and try, right. If I fail, there is grace to get back up again!
In the season we are in, there is a physical, spiritual, mental and emotional exhaustion.
(I’m sure I’m forgetting a lot, but this is some of the extra stuff we do on top of normal parenting stuff)
We get up when Zekey wakes up (at any hour he needs) crying because of either sadness or pain. We wake up to get his meds in the early morning as well as start his feed (he has a g-tube). If he’s willing, we’ll rock him back to sleep otherwise we put on his favorite movie or show to help bring him mental relief. Mid-day, he receives more meds and extra fluids to keep him hydrated. We check on the feed. If it’s done, we take him out for cuddling and preparing for another nap. After he wakes, we get his favorite show turned on to calm him and extra meds if needed for comfort. His second feed is started and we keep an eye on his ability to handle the feed. If he cannot handle a feed, he will spit up and choke on the fluids. Dinner-time meds and eventually sleeping meds are given.
We prayed and believed for healing for a full year and a half before we received Zekey’s diagnosis. We continued praying and believing for healing but Zekey kept declining and extremely fast. I still pray that God would heal Zekey on earth but there’s this peace knowing Zekey will be healed, just not here.
During that year and a half, my faith grew at the same time it was challenged like never before. I grew closer to God not necessarily because I believed God would heal Zekey, but more because I was learning to trust Zekey and all of my kids over to God in ways that I really needed to, and I believe most mommas may struggle to as well. I was learning how to walk with God regardless of life circumstances. I learned to believe the truths of God regardless of the lies the enemy was trying to get me to believe. I learned that I was going to really have to tap into The Devine Power within us, given by the Holy Spirit in order to walk on waters I was very unsure of.
Right now? God is very silent but again, I cling to His truths. He is present and near to the brokenhearted. He has won and Batten disease dies with Zeke’s temporary, earthly body and Zekey will go on to his new body, in the arms of Jesus.
I’m struggling to be okay with not having a timeline for my sweet boys’ life. I don’t want him to suffer but I want to hold him, make him laugh, get that once-in-awhile eye contact. How long do we have with him? We just do not know…this is so, so challenging right now. There is no preparing our hearts, not really. And there is no planning for the future. I’m learning to take the day I’m given and live it out.
Simple tasks given by my kids’ teachers are just one more thing for me to do on top of nurse visits, keep up on Zekey’s vitals (Just look at the physical exhaustion section again). I just choose to do the most important ones and for.get.the.rest. I throw things away that would make the head of Parent’s club gasp in shock. Oh.well. Some other season but not. this. one. I do NOT sign Cy’s ‘to-do’ list for the week and send it back as I’m supposed to but I do (most of the time) make him do everything on that list. That counts, right? I also pack my kids’ lunches 95% of the time except days like today when…I didn’t. They bought. I’m learning to not try to do it all, or maybe I’m still not doing it all but I’m not caring so much. My family’s well-being is most important, not how many sports and extracurricular things they are involved in.
Also, my brain doesn’t work. It’s always in a fog but I can play it off pretty well, sometimes…
I could cry all the live long day except, I cannot because I have to do.do.do. stuff. And when I don’t have to cater to my sweet 2yo, I don’t think, “Okay, get a cry out.” And when the hospice nurses tell me signs to look for to point to Zekey’s passing, than 2 hours later signs show up, I cry really, really hard that night. But, when he seems so happy in the morning hours, I feel like we have a year, not a month or two. Really, anything short of my son burying me, his mom, of old age just.sucks.
So, My March Goals?
1. Read a book. I am taking a break from some social networking to focus more on Zekey and all of my families’ mourning in this season + drawing closer to my heavenly Father and so reading is a lovely pastime. I find my creative juices go a little crazy (in the best of ways) when I read so I’d like to finish a book I’ve started.
2. Spend one on one time with my oldest two, Cyrus and Eisley, doing things they love, once a week. I’m guessing Lego building with Cy and crafting/sewing with Eisley will be in order.
That is all. I’m going to make my list short. This is a season and I’m in no hurry to rush it because as difficult as it is, this season is also the last with my son, Ezekiel. My sweet, precious, joyful boy.