I was driving down O Street. My car has been having some issues, so it’s hard for me to get started, but once I get going I’m ok. Each stoplight kept turning red right when I got to it. I’d have to get going all slow and cars were passing me on both sides. I felt such a parallel to my life right now. Every time things get going, and things seem to be looking up, I have to start all over again. And the faster or higher I get, the lower and harder I fall. It takes longer each time to get going again. I feel so beaten down. E’s health issues have affected every aspect of our lives. I can’t work much because he needs so much attention. C doesn’t get as much attention, and really E doesn’t get as much as he would if he was healthy either. Most of our time is spent getting feedings ready, and he sleeps a lot of the time in between. We don’t get much sleep, and when we do get a good amount (5-6 hours), it’s broken into at least two chunks. It’s starting to really wear me down. Maybe I’m just having a bad day. Our finances are horrendous. We thought we were really making progress, even in to April. That first hospital stay was the start of a downhill mudslide. Between expensive formula, then more expensive formula, then using higher concentrations and thus going through the most expensive formula even faster….and expensive medicines….and huge bills from his stays and treatments, labs and tests and many many visits to the pediatrician…I’m starting to feel pretty beaten down. Maybe this is just something we all go through at some point. I know things will look up sometime soon.
This is how I feel today. My emotions are all over the place, but they are trapped beneath the surface…as if it is cold out and I’m a lake, and even when there’s a break in the ice, the top freezes over so quickly nothing can get out.
I have other feelings. I feel so afraid that there’s something lurking behind E’s health issues. That we are only treating symptoms of some monster that has yet to rear its ugly head. I am afraid that C will feel neglected, or that she will prefer others to me because I’m not there for her like I have been in the past. I’m afraid of every cough or sneeze or worse, stomach bug that we cross b/c that will be enough to throw E over the edge. I’m afraid that JD will have to miss more work, when he really can’t miss work, and I’m afraid that if he ever gets sick even for a couple days, that I can’t do things on my own. I’m afraid for this week, that I can’t handle everything on my plate, and won’t be able to even take care of both kids at once by myself. I’m afraid of losing myself.
But I am grateful too. I am so thankful for our family. JD’s family have supported us beyond measure, both physically and emotionally. They have given so much of their time and love for our grandkids, and they love doing it and never make us feel like we owe them or like they are doing us a favor. They shower us with grace and love and I will never be able to show them how grateful I am. My mom and CS have been amazing as well. Mom went clear to Omaha with me, and then came back and stayed with me. CS and JC have both helped around the house so much, clearing gutters, trimming trees, mowing, fixing things…and LC has given me so much motivation and emotional support. Not to mention being very flexible with work. Everyone has been wonderful…asking how we are doing. And I know how much worse it could be. I’ve done so much research…I’ve seen families going through things sooooooo much more intense and terrifying. I’m grateful that we are able to be home, and that E is happy and relatively healthy and growing.
Most of all I am humbled by my heavenly Father. I feel safe, despite my fears, tears, and anguish. I know He is holding my family in His hands…and that He has a plan for us. My children are His, and I am so grateful for the gift of them. I know He will always provide for us, and that He will give us peace and somehow carry us through this mess.