I knew motherhood would be hard. I knew it. I knew there would be hard days. Days that I would want to rip my hair out. Some days that I would want to lock my self in the bathroom, or even the pantry, just to have one minute to myself. But on the other hand, I knew it would be the greatest calling in my life. And it has definitely been both.
To be honest, I sometimes question my Heavenly Father, wondering if he knows what he’s really doing?! (Don’t worry, I know that He really does know, but like most, I don’t understand it in the beginning). If he really knows how much more I can handle until I’m to the point of breaking but not quite breaking in half?. (He does.) I have never felt more tried, tested and trusted with anything than I do with my children and motherhood, right now especially.
1 Nephi 2:7–
…..”I will go and do the things which the Lord hath commanded, for I know that the Lord giveth no commandments unto the children of men, save he shall prepare a way for them that they may accomplish the thing which he commandeth them.”
He never gives us more than HE KNOWS we can handle, thus he guides and helps us through to the end. Sometimes I wish he didn’t trust me so much lol but being so trusted with these beautiful little souls, there has never been a higher honor. ♥️
Most don’t know, but last Friday our Little Lexie girl was diagnosed with what is called, Infantile Spasms. The definition: “Infantile Spasms (IS) is a seizure disorder in babies. The seizures (or spasms) make muscles in the arms and legs stiff and bend the baby’s head forward. They look very much like a startle. Babies also might have slowed development or loss of skills (like babbling, sitting, or crawling).”
Now Lex’s don’t necessarily “look” like what is described. It’s more of a split second “event”. Her eyes roll up (so you see only the bottom of the color of her eye and mostly see the whites of her eyes) and a quick convulsion of her body. These happen in episodes and each episode consists of multiple split second convulsions (seizures) that are about 45 seconds to 1 minute apart. Her longest episode lasted between 25-30 minutes, with these seizures happening every other minute or so.
These last few days/week have been so incredibly hard to put into words. Such a whirlwind. Well more of a tornado. I know a lot of people have much harder trials, and I praise them. But A mama’s heart is a mamas heart no matter what situation you’re in and a mama’s worst nightmare? ANYTHING bad, harmful or hurtful happening to her kids. I thought (hoped) that being a preemie, in the NICU and being hooked up to machines with wires, would’ve been the hardest and worst thing I would go through with my girls. False. Last Friday, my Lexie girl had about 25 different probes with wires on her head for an EEG. I thought that was hard. Waiting for results. Rough. Having the neurologist call and confirm the diagnosis of IS. Completely broke my mama heart. How much worse could it get? Let’s just say, life is a little rough at the moment. She is taking a high dose steroid to hopefully stop these seizures and hopefully prevent it from developing into a seizure disorder in the long term. Anyone had an infant on prednisolone? Cranky/irritable, constantly hungry. It gets exhausting, especially with two others needing attention as well. But as a mom, you push through it.
Like I said. Last Friday was hard. Wednesday was harder. She had to go in for a MRI of the Brain. Under sedation. I used to work at PCH in Same Day Surgery. I’m used to seeing parents let their kids go with medical pros for an extended period of time. I never truly understood the emotions behind them. Now I do. And she was only sedated not under general anesthesia. Over an hour, I sat there, by myself (stupid COVID) while my baby girl was under sedation getting an MRI of her brain. I never would have thought I’d be saying those words about my 9 month old. For those of you who don’t know, yes I have anxiety. And my anxiety level after sitting in a small exam room by myself? Yeah, through the roof! Luckily I was able to talk to my mom on the phone the whole time, pretty much kept me from having a complete melt down.
But, I am happy to say, everything went really well and she slept most of the day yesterday and today has been pretty good! The MRI came back normal. No lesions or malformations of the Brain. But there was “right middle ear and mastoid effusion”, which is just an ear infection. (No the ear infection is not causing the seizures). While a normal MRI is a great thing!, it also means that we still don’t know the cause of these infantile spasms. Now onto Genetic testing and then possibly Chromosomal testing. Unfortunately if those tests also come back normal, there is a possibility that we may never know what is causing these spasms to happen. I’ve never been a fan of the unknown.
Now back to the “right middle ear and mastoid effusion”. Turns out, on top of it all, she has a double ear infection. 🤦🏽♀️ I will say, I’m glad we caught that because we also caught that Jordie has a right ear infection too. More quarantine time for us! I will continue to update these next couple weeks, as we go through more testing. Prayers for our little Lex are always welcome and appreciated! 💕
Geez, when it rains it pours right?! There is never a dull moment in our lives, whether it’s good, bad or in between. Who is done with 2020?! This mama right here is! 🙋🏽♀️
I know it can be hard, and I’m struggling with it, but if you have faith you can always create your own sunshine! ☀️
Love you so much! 💋