Time for me to wear my heart on my sleeve, this isn’t easy for me because I don’t like being vulnerable. I need to be fine on the outside. To present a brave face even when I’m not ok. I need to be strong in and out so admitting that I’m not ok right now is incredibly difficult.
My daughter took this picture.
So I need to apologize for being behind the ball, so far behind the ball in 2020. I still haven’t finished proofreading the blog posts I wrote for January, I announced an upcoming contest for a bra but posted the wrong picture, and I still haven’t posted the blog post about the seamless bras. It’s written and today I took the pictures for it. I also haven’t started any of my February marketing, I had a theme and a plan for content but right now my mood, quite honestly, is Fuck February. I’m not a Scrooge when it comes to love, but I’m really tired and I haven’t been able to light a spark inside myself at all this month.
One of his EEG's
In November, my son was diagnosed with epilepsy and put on medication he will likely have to take for the rest of his life. This didn’t come as a surprise. I had to fight for years to get his Developmental Paediatrician to listen to me and to take my concerns seriously. In 2018 we finally got a referral for an EEG and it confirmed there was seizure activity in his brain. And still, she didn’t want to refer us to a neurologist because developmentally he was improving, behind his peers significantly, which is why we were referred to her, but in her eyes still making improvement.
That wasn’t good enough for me, so I fought for a neurologist, which took more precious time. In 2019 after a few neurology appointments and another EEG, my son's seizer type was diagnosed and he’s now on medication that I hope will improve his quality of life and stop further brain damage. My son is not neurotypical, so any advantage I can get to help him I’ll take.
Piggybacks and shoulder rides: He really does like to hold on by covering my eyes!
November 2019 was the end of a long three-year war with smaller battles and times of rest. You’d think now that it’s all said and done, I would feel a sense of closure, but instead, I feel completely exhausted and I think a little broken. Which is really hard to admit out loud because I’m the strong one. I’m the one people always say “you’ll be fine” and they believe it. But I know in the long run I’ll be fine, but that will really depend on how I take care of myself now in the short term.
12 months old!
My story is a lot more complicated than this, of course, it started when my son was 13-14 months old and he started slipping away from us. I lived through it in silence without support and looking back that was a huge mistake. But I’m not the kind of person that talks about her problems and the negative things happening in my life. I don’t like to complain, I know I’ll work through them, this isn’t forever.
Mama's little helper!
2018 was an exceptionally hard year and I really wanted to write about it, and share my life with you, but I was afraid it would scare the HEA mama community away, and with good reason. When you’re pregnant you don’t want to think of all the bad and the “special needs” that could come with your baby. You want Happily Ever After with health and happiness. I didn’t want to cast a shadow over your pregnancy. But it was also the way some of our friends and family reacted that left me incredibly unsure about how much I should actually reveal about my daily life and the weight of it.
Camping, he was helping with the dishes! 15 months
When my son was diagnosed with a neurological disorder, some of the reactions surprised me. People were less than supportive. I don’t know if it was my husband and I they wanted to avoid, we were going through the hardest time of our lives, our baby was slipping away from us, he’d lost the ability to speak, stopped making eye contact, threw a lot of tantrums, we were losing our happy go lucky laid back little boy and we were stuck waiting on our medical system to squeeze us in. Or did they think his neurological disorder was contagious (it’s not by the way)? Or worse and very common, how much of his behavior did they think was bad parenting on our part? It was an isolating experience.
Helping in the garden! 18 months
So I didn’t blog about it or share any of my struggles on social media. I didn’t want what I perceived as my weakness at the time, to scare away any of my small audience. I didn’t want to lose anymore. But I realize now if reading about my home life and my struggles because I’m a special needs mom makes you want to leave this space and not support my small business then you’re not part of my tribe, and that’s ok.
For my heart and soul, I’m going to be writing more about the journey that brought me to today and the problems I’m having now as a result. And maybe I can give you strength or at least teach you not to make the same mistakes I have if you’re on a similar journey.
This is going to be a raw experience, and just a warning, when I’m emotional and exhausted my grammar goes to shit, so don’t judge, I’m not dumb, I’m just not at my best.
Exhausted and Feeling a little exposed