to lose this rage and move out of the dark
I ain't looking for rainbows or shooting stars
Just some peace of mind and a hopeful heart..."
That's a song by Mindy Smith that I've been listening to through this long night. Yesterday was the day that Lila went back in. And she went back in with a bang. She was maybe in worse shape than I've ever seen her. They did two hour long breathing treatments and then put her on a continuous breathing treatment for five hours after that. She got oxygen. She was on a magnesium drip through her IV. She was pretty bad. It was scary and overwhelming.
I'm reading those words and they somehow don't do the experience justice, but I have no others.
The good news is that with all of those heavy duty things they were throwing at her lungs, she seemed to improve very quickly. Now the question is how long to keep her in the hospital. I hate it here. I want to feel grateful that I have this great place to bring my child for help, but I'm just so tired of it.
We have now been living in hospital, sick child world for three weeks today. We have had some days out of the hospital but they've been full of oxygen monitoring, breathing treatments, peak flows, and doctor appointments. I feel like normal life has once again been tsunami-ed away by lung problems. I've had to quit my job and my life feels like it's a mess again. And I can't fix it when Lila's health has to be the focus.
I sound whiny even to myself. We have been given so much. We have had a reprieve from all this. We have been given better tools to help Lila. There is so much to be grateful for and I know it and I almost always feel it.
But...sometimes I am unspeakably lonely. Walking this journey is a solitary thing. Sitting here all night watching her breathe, watching the monitors. Trying to work with the doctors, keeping Lila calm and getting her to cooperate.
I am sad and tired. I seem to always be when we are here. I will wait for another day. Wait for Lila to get better. Wait to feel not so alone. Wait to feel gratitude wash over me like rain, cleaning away all the fear, anger, frustration, grief, and loneliness. It will. I'll just wait for it.
"I need peace of mind..."
We are all praying for a quick recovery for Lila and you. God will not leave you. God is there. Talk with him. God will give you answers. I love you. Mom
ReplyDeleteKristin: God is with you in your frustration & weariness....your feelings are valid, and can be motivators for what efforts will lie ahead. I'm sad that you are back at this troubling place again. You are a wonderful mom to both of your children. You have my continuing prayers for strength & perserverence for today, tomorrow & everyday. Hugs to you and Lila both. Amy
ReplyDeleteDear Kristin and Ben,
ReplyDeleteI haven't lived through the hospital stays, but as a mom of twins with autism, I know the isolation of chronic issues. God is leading you through this morass of misery. It's not easy, and it won't ever be a memory you will want to remember, but it is your life. Peace comes when God takes over. I recall singing hymns in the long night hours just to make it to daybreak, when another 20 hour day would start. Right now, God is carrying all of you his beloved children, and there's only one set of footprints in the sand. God knows and understands the heartbreak and the misery and the lonliness and the isolation - how do you think Jesus felt in Gesthemane? He has lived through all the experiences we as humans endure.
I pray that peace will overflow your hearts and minds even when the stress of medical care is present in your lives.
Deb