Author: Maven of Mess

A year ago, at 8 weeks old my daughter was life flighted to the closest children’s hospital in our area. Upon admission to the ER, we were informed she was in severe septic shock and required transfusions before even taking off. This REALLY shocked me because I had been at our pediatrician with her THREE TIMES that week. They told me it was (and I quote) “just a frog in her throat” and it would pass. Mama called bullshit and took her to the hospital. That decision saved her life.

She was dying and we didnt know why. During this hospitalization, after so many IVs and PICC lines, intubation and testing (6 weeks of these things actually) we were informed that our baby girl has cystic fibrosis on top of having been born with down syndrome. I was told that this was a 1 in 1.2 million diagnoses and they didnt have much information for me, but to not expect much after 6 months.

Also during this stay, I noticed my daughter was making some unusual movement which the doctors claimed were “typical baby quirks”. No. They weren’t. For the next few weeks, I asked every single doctor and nurse if they could do an EEG, and finally some testosterone driven physician said “just order the EEG to shut her up”. They set her all up one night, covered her perfect little head with teeny little electrodes then wrapped it in like a gauze. There was a monitor and a button for me to hit when I noticed anything. That was one of the longer nights of my life. Two days later, the neurologist called the floor and told them she would be up with our results. The same neanderthal doctor who ordered the test to “shut me up” came in the room to hear the results. The neurologist squatted down next to me and said “first of all mama, I wanna congratulate you on being such a powerful advocate for your baby. You were right. The test show abnormalities in her brain waves. We will be starting her on medication today”. That other doctor dropped his head and walked out of the room. Asshole. Never doubt the mama instincts”

My initial thoughts were “how the hell did you miss any of this on an amnio?!” Which I had at 20 weeks pregnant after a genetic screen determined she had a high probability of having down syndrome. Not only that, but she had a false negative on her newborn screen for CF, DESPITE having been admitted to the NICU with a diagnosis that is NUMBER ONE on the list of red flags for CF in newborns. It was still overlooked. Had ANYONE followed protocol or even just paid attention, she may have been spared all of this insanity. My next thought was “how do we help her?!” And so began the next stage of our journey. Through all of this I learned that a) my baby girl is the strongest, most resilient person I have ever met, and b) I am apparently a close second

After a whirlwind beginning to the life and times of our girl, we went back to our life at home. I was a mom of three amazing kids. All of whom needed me. Despite our babies extra care, I still had a home and two older babies who needed mama. So, finding a balance was CRITICAL to our mess. So, we made the decision to move closer to my family. Then came the ungodly process of moving. Can I tell you how much I HATE moving?! August first was decided on as our move in date and it was June. Sure. It may sound like an adequate amount of time, but if any of you have children, you know schedules and time frames mean ABSOLUTELY NOTHING to them. EVER.

During this process I learned that my children are completely incapable of putting toys in boxes, putting bedding in bags or even taking their clothes out of their drawers. Awesome. Dont worry guys, I got it! 😑

Halfway through this whole debacle I began to be EXTREMELY hungry and unusually tired. Guess what?! I was pregnant!! Of COURSE I was! Why wouldn’t I be! And yes, I know how this happens, and ways to avoid it but here we were. We now faced the challenge of mama being on “light duty”. But somehow with little incident we made it! On the weekend of my birthday, we spent both days running back and forth between our two homes which were an hour apart. We made it. We were home. And I don’t know if I mentioned this, but I really REALLY hate moving.

These days I go by the names mommy, or Mama or “ahhhh”. I have 4 uterus gremlins 3 girls and 1 boy, thankfully. Whoever says boys are “easier” OBVIOUSLY has self destructive tendencies. My oldest is 7, and she already knows everything, I am wrong. Just that. I. Am. Wrong. About. Everything. Then my son who is 6, and has made it his mission in this life to give me a stroke AT LEAST once a day. Then comes my earth angel. She is 18 months old and was born with down syndrome, cystic fibrosis and epilepsy. They told me not to expect her to make it past 6 months. She will be 2 in September and she is the happiest, funniest, and smartest child EVER. Finally, I have an almost 3 month old boob goblin who spends her days using me as a human pacifier. If she is not punching me in the boob while growling at my nipple, she is asleep and still latched…. I feel like a dairy bar.

In the midst of all of that mildly coordinated chaos, I run two small businesses which are growing, and help me to feel as though I have somewhat of an identity besides “insert child name here”s mom….

If that wasnt enough, last year we moved into an old farmhouse, which I had admired in passing during my teens years somehow the stars aligned and we were given the opportunity to move here! Previous residents had just lived here and that was it. I am actually making it into a home. No, we dont own it, but I would like to settle in while we have it and I want my house to be our home. So that’s what I will do. However. With this situation, comes the care of the animals. That’s an entire story for another time…

So this is me. I want to create a thing. A page where moms who some days feel mediocre at best can come and hear from another mom who feels exactly the same. I see you mama. You’ve got this.

We can make it out of this!

“I don’t negotiate with terrorists!” – me when one of my children are trying to convince me they need things after acting like jerks pretty much all day….

This is history in the making. “Stay at home orders”. Global pandemic. Self quarantine. Up until a month ago, these were not phrases you heard. Now they flood social media. Now don’t get me wrong, I am extremely thankful for this time with my babies. I am thankful we are all healthy and safe. However, I have discovered that despite the fact that I love my children with every fiber of my being, there are times that I really don’t like them!!

Trying to clean my house with them home around the clock is like trying to rake leaves during a hurricane. Completely pointless. Making food, almost constantly only to be told “mama, I onwy eat peanut butter and jewwy on MONDAYS!” By my 6 year old, on a Thursday afternoon after having made the exact same thing the day before (NOT A MONDAY) by request from the same child!

Or coming down the stairs with a screaming boob goblin mid meltdown because I can’t get her feast out of my shirt fast enough, only to enter the living room to see the oldest two in a slap boxing match over the roku remote. Which then escalates to full contact take down resulting in a chorus of wailing “MAMA!!! My weg is bwoken!” Or “I cant see! My eyes!!”…. THEN, as an obvious response to the chaos around us, the tiny being hanging from my chest starts whipping her head around, all while still latched. Finally I manage to diffuse the situation JUST in time for my 18 month old to wake up from her 7 and a half minute nap.

And to top it all off, I am now also supposed to operate a classroom from my home for a kindergartener, and a first grader. While also caring for my special needs toddler and an almost 3 month old who is going through growth spurts and enjoys using me as a human pacifier. This is where I start mumbling (on repeat) I am thankful. I am thankful. I am thankful.

I think what keeps me sane is knowing I am not alone. Pretty much every single family in this country is going through this exact same thing and one thing I know for sure is that we are resilient. We will make it. We are making history and we will all be okay.