When even little things seem to be too much to bare
As she got off the table, I could see in her eyes, that she was going to cry.
As we walked down the hall and out the door into the waiting room the floodgates opened. We took a break and sat down where Bluey was playing, and spent a few moments getting all the tears out. After the tears, came frustration and anger. “I hate hospitals” “I hate tests” “why do I even have to have MLD?”
Now, I can give her comfort during these times, as I hate all of these things too, and I also wish she didn’t have MLD, but I could never understand what goes on in her head when we have to get blood drawn or get testing done. Even putting myself in her shoes momentarily, I could never fully understand where all these “feelings” are coming from, but I can try.
We sat there talking, me more listening.
I have spent the last month or so broken about the things that come out of her mouth, Eli as well. Plenty of tears have been shed. Many down moments questioning everything, beating myself up at the things that I can’t make right for them.
This will never go away, and I have spent more time comparing myself to others in similar situations, which unfortunately just makes me more frustrated at myself. I should be grateful, happy or appreciate what I have. It could be so much worse and I know this. However, as Ella sat there crying to me, it hit me like a brick.
I am allowed to feel broken. I am entitled to be angry and sad at our circumstances. My daughter is sick of tests that will never end. She is tired of tripping, not being able to run, not having friends to do things with. She is sick of everything, but most of all, her body. Tired of what her body can’t do anymore.
We do remind her often of what she CAN do, but Hut is much better at this. He has this incredible ability, of getting her to focus on what she CAN do and also be a part of. I am grateful for this. I on the other hand am the one that is there when she needs to vent and cry about what is upsetting her.
Tonight we all individually have things that we can do, but we are choosing not to do any. We are going to watch Hallmark and play games together, snuggle or have hot chocolate and s’mores in the air fryer (they are just as amazing)
Ella has big dreams for her life, she wants to go away to college, have kids and get married. These are things I don’t like to think about too often as focusing on today only seems to be what works best.
I have tried for years to fix things but I can’t. I have tried to change things, but that can only go so far. For some reason, I think I am in control of everything and take responsibility for making their life good or not so good. That’s a lot to put on oneself, but thanks to some amazing women from a church that Eli and Ella go to, I am practicing surrendering. Something my dear cousin has tried helping me with for years, yet I always seem to end up where I started… thinking I can control everything, if I just do this or that.
Surrendering is scary, because you may feel out of control, giving up what you think should be, to accept what life actually is, is not easy. Letting go of what you think your life should look like is terrifying. Accepting what IS may seem as scary but it definitely brings more peace. I can honestly say I know this first hand. It’s not often that I am capable of letting go and surrendering, but when I do, a calm comes over me. The weighted blanket is lighter and things just seems to work out.
So tonight I am grateful for the small moments of surrendering. We cried and now we will find joy together and move on until the next tough moment arises.
I am so very proud of this young lady for sharing her feelings and not holding anything back. She moves on much quicker that way, not trying to push the thoughts and emotions away, but accepting them, spilling it all, acknowledging what we don’t like and what we can and can’t change. Of course on the way to school, a little Starbucks helps as well.
Fear Not 