Tonights a feelings blog post. Will there be some updates, sure. But mostly tonight is me dumping all of my feelings into words.
I'm so damn angry 1st of all. Angry that this is my life. Angry that I'm having to fight this battle every single day. I'm never angry with Eli or the kids but angry with the situation. Angry with our DME when something doesn't work, angry at the pump for beeping, angry at the clock for going so fast, angry at the nebulizer for leaking. Angry at everything.
Then I'm jealous. I'm jealous of everyone who doesn't have to go thru this. Everyone who gets to sleep thru the night. Everyone that gets to curl up with their baby and take a nap. Everyone who gets to nurse. Everyone who can just load their baby in the car and go shopping. people who don't need nursing scheduales, and 14 specialists, and scheduale making, and hours counting, and report 2 times a day minimum, and vitals and stats and meds. i'm so damn jealous of everyone who can just cuddle their baby. i have to adjust a minimum of 4 cords everytime I want to cuddle my son.
then i'm sad. sad because i have to watch my little man go thru all this. it's hell on him. the torture his little body goes thru it's not fair. (that takes me full circle to angry). then i'm sad for my 4 older kids. they have to watch tiny go thru this. they don't get a "normal" life. they know what each monitor is what it does, how to run it, what each beep is, what the numbers mean, how to carefully move their little brother to play with him, and worst of all they know how tough it is to take him places. they know that the 5 after school activities that they might want to go to can't happen because i can't be in 4 places at once and haul tiny along. i'm sad for me....yes i do have a little pity party (as some would call it) for myself sometimes.
i'm tired. oh soooo freaking tired. am i physically tired. i think so. emotional and mentally. pretty sure. do i know for sure anymore? i'm not 100% positive. i'm so exhausted and so numb. i don't know which way is up or down half the time anymore. we don't sleep. we are up and down all night trying to help eli stay safe and comfortable.
i'm lonely. i miss my friends. i miss getting together with people. i miss playdates. i miss company. i miss chatting and gossiping about things that mean nothing. i miss conversation that doesn't revolve around heartrate, respirations, o2sat numbers, GT feeds, and medication doses. i want to do something that doesn't affect someones life deeply, i don't want to know that i have to be in charge. i don't want to be responsible for 5 minutes.
i'm so tired of hearing how strong we are. i'm so tired of hearing that nobody knows how we do it. i'm tired of hearing if there is anything we can do let us know. i'm tired of hearing "praying for you" "hope all is well". it isn't well. prayers aren't fixing it. i want someone else to be strong right now. i want someone to tell me it's ok to absolutely fucking lose it and curl up in a ball and cry. i want someone to call and chat and gossip about meaningless nothing, because what everyone doesn't get is it means soooo much to me right now.
i just want my life back. i want to feel normal. i want to be me for 5 minutes. i want to just break down and lose it and know that it's ok and that someone else can be strong enough for me too. i want my tiny man to get better. i want this to all magically be ok.
oh and did i mention i'm scared. scared might be a main one, maybe, i think. i'm scared about what next. when will it end? when will it be ok? everytime my phone rings and a doctor calls i'm scared what they will say next. everytime something beeps i'm scared. i'm scared that i can't keep doing this.
i'm sorry this is a huge dumping post but i don't get to dump often. it's normally fake strength and a smile and just keep pushing thru in auto-pilot. fucking auto-pilot.
to end with a funny. i saw his today and thought it was hilarious so have to share, so as not to depress everyone with the above post...
"It's all fun and games until you realize the "rocket" in your kids's Lego launchpad came from the drawer in your nightstand..."
1 comment:
Wow, does this post bring me back about a year. Mine is 19 months now and it is still going on. His lungs are stronger but all the wires are still there, as is the fatigue. I will say that what has changed is my emotional state. The whole pushing through on auto pilot thing does eventually work, and in a bit you realize you have made it throuh the day without being angry or jealous. Someday it will happen. Until then, just keep venting away.
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