Sorry for my hiatus. Things have been crazy, but apparently crazy is how we roll so it isn’t really a valid excuse anymore. Truthfully, I’ve not felt capable of verbalizing our experience without coming across like a whiner. I haven’t wanted to burden anyone with more talk on vomit, tube feeds, pneumonia, infections, narcotic withdrawals, boogers, doctor appointments, etc. Though now I realize, maybe someone out there might need to hear about these fun and exciting things. Maybe my ramblings are meant to be read by someone who needs to know they aren’t alone and their feelings of inadequacy or stress or exhaustion are completely normal and warranted. There aren’t a whole lot of support groups for what Little Miss has put us through. Rather, I should say, there isn’t a whole lot of time to attend support groups after taking care of what Little Miss (and her brothers) put us through. Parenting of a chronically ill child is an entirely different ball game, throw in a few vibrant and healthy sons and it’s pandemonium up in here. We’re getting some pretty good practice and game time in. I’m hoping for the Most Improved Player or the #1 Rookie trophy but will settle for less, or even no recognition at all, when this crazy season is behind us.
I know it sounds insane, but I actually adapted to hospital life (well, once the initial pain dulled) and being home scared me. Yes, I am a mom of 3 boys and an RN with trauma and PICU experience, but being at home with all this responsibility freaked me out. Compare it to a form of Stockholm syndrome if you will. Sleeping on a fold out chair and eating cafeteria food all became comfortable. I even convinced myself I had some level of “control” from our little fish tank we called Lizzie’s Room. In a way it was safe there, I had back up. I could lose it and blame it on ICU psychosis (this is a real thing). I could eventually tune out the bells and alarms and somehow only hear the ones that were really scary. I could make sure meds were given on time and fuss if they weren’t. I knew who to go to if something simply didn’t feel right. I knew she was taken care of. Going home was a goal, a dream that began to feel unobtainable after so many setbacks.
Not saying this level of comfort made things easy, nope, it was not easy. In fact, it was the most trying time of all our lives. I found myself so afraid, so devastated, so powerless, so battered I could barely breath on more occasions than I care to count. To have your family spread so thin and to know your other babies are missing their momma and sister just flat out hurts. To see the same broken look in my husband’s eyes as he helplessly watched his baby girl fight for her life does something to you that is incomprehensible and unforgettable. But there is Someone who understands, and words aren’t necessary, just the mere whisper of His name and there is a peace that passes all understanding. Eventually we became stronger in our weakness, and Lizzie got a little better every day, and we finally got to leave our fish tank. We have settled in for the most part, got a nice routine going. We’ve established doctors, nurses, and therapists who love our little lady and have learned to tolerate her wacko mother.
Our friends and family have been amazing, we could not have made it this past year without them. I am learning to be served, to ask for help, and I am starting to feel capable of serving others again. I was recently informed (both directly and indirectly from 3 different people in the same week) I have been prideful in my refusal of help, even though I only refused as to not inconvenience others. Oops. People, if you are hurting, or weary, let others help you. If someone is offering to clean your house, chances are they realize 4 male humans and a dog have had free reign for the past few months and they will not be shocked by the mess, let them do it. And they also understand you may not be in a position to return the favor(s) anytime soon and are ok with it. You don’t have to do this alone. I say all this as a reminder to myself as we prepare to move across country next week and reestablish an entirely new health team and routine and home and everything. Eeeeeekkkkk!
Every day our not so normal life feels a little more normal. The first couple months home were a blur as we learned to survive out of our comfort zone and on lack of sleep. It’s a slow process and there’s a lot more ground to cover, but my children continue to amaze me. Lizzie becomes more like a “real” toddler daily. I may or may not have found her with a pair of scissors in her hands as she walked around and put the blades in her mouth just a minute after I found her trying to climb the stairs. Can I just say, it is an amazing feeling to know she is capable of getting in trouble just like her brothers or any other child. See, I’m wacko, still suffering from ICU psychosis, wonder how long I can milk that one? Seriously, I will use it. This post is a bit all over the place, sorry, it’s how my mind works now. Darn sleepless nights, darn psychosis. To all you mommas out there feeling like you can barely keep your head above water, it’s gonna be ok. You will adapt and you will grow in your weakness, just lean on our Father for your strength. You are not alone!
Check back soon, we are working out the kinks on a video. Be blessed!