Every rise must fall

Happy New Year y’all! I cannot believe how fast this past year went and it’s 2018 already. Last year was such a hard year for us with losing my grandma, such a vital person in our lives then Havens Chiari decompression surgery only a week later. I learned the difference between friends, family, and acquaintances and then our car accident ended the year on a pretty crummy note but we also had many highs as well. Mia started kindergarten, Haven started preschool and ABA, Haven really started to come out of her shell she’d been trapped in after healing from surgery. I was able to become a stay at home momma, my momma got a beautiful new smile, watching my brother marry the love of his life and a girls trip to IU with my favorite ladies to visit Maddie. I got to watch my uncle start his own amazing business, and Matthew expand the league. 2017 just held so much for us, happiness and heartbreaks. Highs and lows.

Reflecting on the year behind us and all the ups and downs helped put into perspective something I have been struggling hard with lately. There will always be ups in downs, but for every fall there will be a rise, and for every rise there shall be a fall. Life with Haven is like one never ending roller coaster, just when you get through the lows you peak at the highest, forget about the lows until life drops you back down and you wonder if you’ll ever get that high again.

Since Havens autism and Chiari diagnosis’s we’ve had many ups in downs. She regressed tremendously at 18 months, leading us into the Autism world, then again after surgery while she still had swelling in her brain and was recovering but she came back stronger than ever, we’ve been in a bit of a bliss since. Not to say there wasn’t bad days, we still had our fair share of them but the good far outweighed the bad finally and that was a win in our book. Here we are now though, back in a low, a very very low low. Ever since our accident Haven has steadily gone down hill, every day is a violent meltdown again, some days lasting upwards of an hour, it’s a constant battle with her, her behaviors, and with her eating and her sleeping. Her extreme repetitiveness has returned as well. We don’t know if it’s a growth spurt, terrible threes, or damage from the accident. She will be having another MRI and CINE flow study to hopefully figure it out and rule some things out. This has been not only heartbreaking but exhausting for me. We’ve had to leave events, skip out on parties and outings, and kind of go back to our old ways and bag of tricks. When one regresses, we all do. On top of all that we are attempting potty training and what a nightmare it has been, dozens of dirty pull ups and big girl undies and she still has yet to potty in the potty. We aren’t sure if she’s just scared or if she’s not understanding the concept. Kids with Autism are known to be hard to potty train and late at having success and kids with Chiari are known to have problems controlling their bladders so we really just have no clue. We just know it’s not working. Next week she will start what is called intensive potty training at ABA, something I’m not the biggest fan of but so far nothing else is working. I just keep praying that something gives and we start to work our way back up what feels like a very big mountain.

We meet with Mia’s cardiologist in a couple of weeks, something that has been weighing heavy on my nerves and heart. It’s hard to fathom that I carried, loved, and nurtured these sweet girls for 9 months and my body created one girl with a disability and a brain malformation and another with a congenital heart defect. 2/2 on medically fragile babies. Some days i feel such guilt thinking I did this, my body did this. Which is usually followed by fear of what would happen if I had another? With my Hashimoto’s disease and already losing one baby I am high risk as it is, factor in the conditions my girls have and that’s a pretty scary thought. Don’t get me wrong, I ADORE my babies. I wouldn’t trade them for a single soul, I know God chose me to be their momma but I don’t know if I could handle having another medically fragile or disabled child. There’s days now I loose sleep wondering if both the girls are getting all that they need from me, telling myself I have to figure out how to do more or better. But there’s also days my mind wanders off to having a sweet baby boy. Obviously Matthew and I have talked about someday having one of our own and if it happened we would be overjoyed but I know I’d also be extremely fearful. As a mom you want your kiddos to be the absolute best version of themselves. The healthiest, the smartest, the happiest, the Everything. When one or more of those things aren’t being fulfilled it leaves a gaping whole in a mommas heart.

I hope you everyone’s year is starting off well! I will update on the girls as we know more. Thanks for listening to my late night ramblings, tonight’s one of those nights my thoughts overcome me and sleep is hard to come by. Say a prayer for my girls and send us good vibes.

And as always be the good y’all.



2 thoughts on “Every rise must fall

  1. I love reading these Taylor. It’s a beautiful side of you. They make me cry everytime but also feel hopeful. Great writing!


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