Monday, September 25, 2017

When Life Isn't Easy

When our older son regressed at 2 years old in a single day we had a very new world introduced to us. When our younger son couldn't sleep, couldn't stop crying, and was throwing up all of his meals as an infant, we have a very new world introduced to us. But, eventually, we felt we would understand the new world, get used to how it worked, and the heartache would lessen because it would become our new normal. Eventually even hard becomes your routine so you don't have the constant ache of the newness.

The problem with that thought is ... life doesn't work that way with special needs.

Photo Credit
What we thought was a one time regression, was just the first of many regressions our son would have throughout his life. We didn't realize he would learn to add, subtract, and write only to lose them in the blink of an eye. We had no clue he would learn to pay for his little toy he had saved up for only to not understand what that process was overnight. None of this was explained to us and I never read it on a blog, website, magazine, or medical journal. This keeps the heartache fresh. Just as you finally peel off the band aid from the wound, it's like you hear "not so fast, friend" and it starts to hurt all over again.

When our younger son got older we felt he would grow out of some of his anxiety and other issues that seemed to have plagued him since he was a few days old. When he got his feeding tube we figured this is as bad as his eating will get. We got this under control. We didn't realize after a year on the tube we would put a child to bed after a small supper and a small tube feed and wake up with a child that needed 100% meal replacement because he wouldn't eat a single bite. We didn't know. No one told us it could cycle that like.

To make it all worse, most doctors don't seem to grasp any of this. You go to them in a state of shock and sadness to ask for their help and they tell you they haven't ever seen this or, they have seen it and have no idea what causes it. They send you home to deal with what they, as medical professionals, don't even know how to deal with themselves. You, as a parent, are supposed to know what they haven't been taught.

Photo Credit

It's a hard place to be, and it doesn't seem to let up for so many. It's also a situation that is foreign to most people in our world. When you grieve, have heartache, or have pain, it's usually for a time, for a season. You lose a loved one and are stricken with sadness, but you eventually move to a lesser and lesser amount of pain as you carry the wonderful memories of that person and, if you are a believer in Christ, with hope. But, when you live a life where you start to get your feet under you finally after a huge shock or loss, only to have the rug pulled out again and again, that point doesn't seem to truly come.

What can you do? 

Here's what I have learned:

1) Allow yourself to feel the pain - No, don't live in it. Don't let it consume every part of you. But allow yourself to feel that initial grief, sadness, pain, frustration, and whatever other feelings come. 

2) Find your strength - MY strength comes from my faith, my deeply held belief that there is a God, a Creator of all, a lover of souls, a Savior, a comforter and friend. Honestly, without that, there are days I would completely crumble. I have seen miraculous things and my hope is in one who cannot be changed or destroyed. 

3) Accept this is your new normal - Eventually you have to say to yourself, "OK, this is where I live" and learn to navigate it. You have to. If you want to thrive, you MUST. I know it stinks. It's not where you wanted to be, but reality is ... it's where you are. You have to deal with reality. 

4) Accept that your new normal might change at any minute - I hate change. I like knowing what's coming over the horizon. Yeah, well, joke's on me. I live in an environment where the child I put to bed is often very different from the child I wake up with in the morning. So, I have to take each day, each moment, as it comes. I have to look at a situation and say, "wait, is this a new normal again or just a temporary hiccup". Then I make a battle plan and move forward. The enemy is moving, living, and changing, just like in a war. You have to allow yourself to change with it. Period. 

I would love to say I have this down pat. I don't. I cried to my husband this week that it wasn't fair and was too hard. He held me and told me he knew and understood. He didn't tell me to "allow yourself to feel the pain, find your strength, accept this is your new normal ... " He just held me and let me cry. But, eventually I start to move forward with it, I do work to move to a healthier view of what's happening, and I make a new plan to help my kids. Honestly, I am so grateful to have my husband beside me, and even more thankful I have a Savior that loves and strengthens me because I truly don't know how I would make it another step some days without it. 

Photo Credit


Post a Comment


Random Acts of Boyhood Copyright © 2012 Design by Ipietoon Blogger Template