Only for a little while

Today I was reading my Jesus Calling book and although I always enjoy it, some days it speaks to me more than others. Today was one of those days. “I guarantee that you will always have problems in this life, but they must not become your focus. When you feel yourself sinking in the sea of circumstance, say, “Help me Jesus!” And I will draw you back to me”

When your days start the same every day and you feel overwhelmed, it becomes hard not to focus on the Monotony, the continuous everyday reminders of all the things that are simply what you never anticipated them being. Maybe it’s the morning start of having to help your 16 year old get dressed all while looking at a body that continues to change. Being forced every day to not close your ears when he is complaining of pain, or close your eyes when he wants to do something himself even though it turns a two minute task into a ten minute one and one that isn’t necessarily done right. Your heart or I should say “my heart” physically hurts every single day and I say to those close to me “I don’t know how one is supposed to live a life watching their child struggle daily all while continuing to find peace in all the goodness that is also there. Some days it’s a war within, but luckily the good always prevails.

This is our life every day – every single day, just in the 15 minute drive to school:

I want to play x box with Seth Rollins
What day is today?
Who plays puss in boots? Does he still act?
Remember when Alec Baldwin took the syrum in boss baby?
I love the ninja babies .
We should have off tomorrow.
Why do the lights go out when the one girl comes on from AGT?
Remember when Trump came on and he said “stop with the fake boos!” When is my surgery? When Hannah starts driving, I will walk to school.

I answer every single one, and some, and do it again when he forgets he already asked. I am patient with him and I am gentle with myself, I am learning.

As I pull up to school, I sometimes see people who he was once Friends with in “our old life” it is hard. I try not to let my focus go there, but it’s a challenge and I’m still learning. Every day I strive for more acceptance than the day before. I don’t want to miss something beautiful in front of me because I think I should be looking elsewhere.

After school Ella comes home and we never know what we are going to get. It’s daunting, yet also quite a miracle, because she is somewhat of a normal teenage girl, which we never imagined after that MLD diagnosis. Its not typical, and I’d be lying if I said there weren’t things that break my heart for her and me, but once again, I’m learning and accepting. It’s all I can do. If we aren’t trying to learn and improve in life, then what’s it all for?

We all go into parenthood thinking things should be like this or that, you know, the natural progression of how the years with your kids go, until they are on their own. Many parents won’t have their life go like that, and there will be detours and times to go in reverse, there will be dead ends and then there will be green lights that make you think all is right in the word, even temporarily. Some will have to make decisions for their child that will change the course of their future. I didn’t want to be that parent, but I pray to hear God’s voice whenever those decisions have to be made.

We didn’t ask for this, but my guess is God knew what we needed. Our hearts are changed, along with our minds and of course our lives, because of being shown how to truly love. It’s easy to love a life that is easy, pretty, and perfect. It may be harder to love things in life that don’t turn out as we expect, but I can guarantee the love is deeper and more fulfilling than you could ever imagine. Our life is filled with little losses every day and because of that we have learned to appreciate more than we ever could have living a life that went “as planned”

Today I took a lesson from my Jesus Calling book and I asked Jesus to help me, and not once, but over and over. I got up from my knees and believed he would help my heart! He did! This evening I had peace and that is not something I come by often. Peace, and even if it’s only for a little while, I will go to bed thankful and grateful.

Ella’s 8th Gene Therapy Birthday 🎂🎈🎉

Ice cream with a good friend 💙

~ by Becky on February 8, 2022.

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