Not forgotten

It's been really really rough recently. Eli's autoimmune disease has been in high gear and we have precious few solutions for the acute issues, plus Eli is experiencing tons of side effects from different drugs that need to be "fixed" with other drugs. Intervention leads to more intervention. A lot of times he needs medical intervention and plenty of times I'm fighting against it. Which is another issue. I'm exhausted from battling the hospital in order to advocate for my son. There are WAY too many spoons in this pot, they don't communicate well enough with each other, they DONT have a good understanding of Eli's medical history and his body's obscure ways, and they don't communicate well enough with me. To put it simply, I have very little trust in 95% of the people that are treating my kid. I have immense trust and respect for our primary doctor who is captaining the ship. So most of the time I'm fighting smaller battles with how Eli is being cared for and addressing the bigger issues with our captain doctor., who is well equipped to treat Eli.
I've been weary. It's difficult to solve one problem only to meet another problem and watch your kid feel worse and worse and get sicker and sicker. It's tiring to constantly (constantly!) chase people with needles away just because it's more convenient for them to poke your kid than access his central line to get blood. It's maddening to wake your kid up a few minutes after he falls asleep because the pharmacy just sent a med up and he has to take it, only for the tech to come by 15 minutes later, as soon as he's fallen back asleep, to get vitals, which will wake him again. Multiply by 5,280 and that is my life. It's painful to lift your kiddo who is carrying an extra 40% body weight and has no strength to hold himself up onto the potty with your bad back. My whole life I have been completely non-confrontational, to a fault at times. But this hospitalization in this hospital that centers around doctors' convenience instead of patient care has brought out a side of me I did not know existed. Maybe it's fear and maybe it's sleep deprivation, but I am a beast. I mean that in both the best and worst way. But I am not afraid at all at how my words will be received, only that the person I am speaking with understands what I am communicating. I do try to give as much respect as I would hope to receive (a considerable amount), but as the mom I am ignored and disregarded the majority of the time. I guess that always has been the quickest way to fire me up. I'm so thankful that our captain doctor values my experience and observations. He is a great doctor and really, an even better human being.
But I'm tired. I'm tired of advocating 24 hours a day, I'm tired of waiting for another shoe to drop, I'm tired of watching my kid suffer, I'm tired of being tired, I'm tired of living in a hospital, I'm tired of moving hospital rooms (we're on room #10 currently), I'm tired of missing my husband and my firstborn, and I'm really tired of just wondering where God is.
Yesterday, a friend of mine back home woke up in the middle of the night and her heart was really heavy for me and Eli. She felt an urging to drive up to see us. She prayed and went back to bed, and in the morning she felt the same, strong urging to get in the car. She told her husband and she went to church.
At church, another friend messaged me, asking me if I was watching church online. I wasn't. I was catching up on sleep from being woken up so much at night.
It seems our pastor had felt prompted to throw his whole sermon out and spend the service praying for some people who needed healing. They started with Eli.
After church my friend who had felt a strange urge to drive up to see me texted to tell me she was coming immediately. This was the first I had heard of any of it. Normally I would be horrified- it's not necessary for someone to take a 14+ hour round trip just to hang out with me and be a friend for a few hours. But I wasn't horrified. I just felt so loved. In the moment I read her text, I realized how much I have missed friendship. And I felt the extent of my brokenness that I am constantly hardening myself to. I felt like God was telling me he hadn't forgotten me. He saw me in the suffering that I have refused to acknowledge and sent someone to hug me. And because I experience love through acts of service, it was a big act of big love.
If I'm being 100% honest, I'm not sure what God is doing here. But I'm thankful he is looking after me, regardless of my doubt or rage or ridiculousness, with big love and faithful brothers and sisters.
LOVE.