It's been a busy few days. Eli's cold has been in a holding pattern. He's not getting considerably worse but isn't really getting better either. I'm so thankful for cough assist and suction! He has had therapy for the last few days and has done really well with it. He's learned another new sign and today it looked like he may have combined 2 signs together! That's huge for him.
The older 4 have 1 more day of school and then they are on spring break for the next 10 days. We will be leaving for Wichita tomorrow and we will be there until Monday. I'm looking forward to a few days away and hopefully a bit of time to unwind.
I'm exhausted. I'm having headaches on a daily basis. We are always behind on everything. Like always we are constantly waiting for the next big hurdle.
Currently there are multiple little ones in our community who are really struggling. 1 little one is on hospice and very deeply struggling, another is in the hospital and they are unsure if he will make it thru this hurdle, and a 3rd little one is incredibly sick and was rushed to the hospital. My heart goes out to these families, so much so it makes me hurt so deeply. I read their updates and cry and ache. I wish that there was more that I could do for them, something that I could say to them, but there isn't. I know that nothing will take away their pain and nothing will make it all better.
That's the problem with Mito. Nothing will make it all better.
At church on Sunday we watched a video and discussed some of the things. I took notes of some of the things that "spoke" to me, and for some reason I feel like I need to share some of them.
"This world matters. Religion is not about transportation to another world" This struck me as huge. It's been something I've thought about, using other words, but this so immensely summed it up for me. This world does matter, and the more we go thru our journey the more I realize how VERY much this world matters. The here and now.
"Heaven and hell is inside of us, here and now." WOW. I've felt this so many times. I feel like so many days have been a real life hell for us. The things I witness in my life. The things that we go thru and that so many families go thru. These little ones are going thru HELL. The counterpart to that is there are times I glimpse my heaven. In Benjamin's smile, in Jace's beautiful eyes, in Emily singing, in Ariana's little twinkle in her eyes, in the way my little man cuddles up against me with his head tucked into my neck. I feel it sometimes in the quietest moments, in the song that plays at just the right moment.
I crave those glimpses, but sometimes I think I'm so busy living in my own personal hell that I may miss some of them. I realize this may be, but I'm so deep in my thoughts and feelings and fears that I'm unsure how to move past it all. I never used to be afraid of things, of life, I used to feel as though I had hope and excitement for life and such.
It never ceases to amaze me the things that Mito has given me and my family and the things that it has taken from us, continues to take from us, and will ultimately take from us.
My heart goes out to these families right now who are struggling. I hope they can feel the love from all of us surrounding them and their families in these beyond difficult times, in this hell.