A Letter From A Special Needs Mom To Stay Bad-Ass!
I had the pleasure of having Shelby Holbrook, a mom in my "tribe" write this compelling blog post. She is contemplating having a blog and I say girlfriend, you have a lot to say!
From One Special Needs Mom to Another,
First off let me start by telling you, that you are a Bad-ass! Yes, I’m talking to you. I know you probably just rolled your eyes or brushed off that compliment. I know I used to, every time someone gave me a compliment. I surely didn’t feel like a bad-ass. Or my favorite one, “So Strong!” *puke face*. I didn’t feel bad-ass or strong, I still don’t most days. I felt like I was drowning and couldn’t find my way up. But I’m serious, if you take nothing else from the rest of this word vomit, please take away and tell yourself daily that YOU ARE A BAD-ASS! Especially on the days when it feels like your whole word is crashing and you just feel like a complete failure.
One of my biggest struggles with joining this “tribe” was the fact that I never felt like enough. I felt as though I had to be perfect and positive all time. Whether it was around friends, family, therapists, or even the doctors (ESPECIALLY THE DOCTORS!). I struggled so hard, with so many things. But the biggest was just pure fear. Fear of the diagnosis. Fear of the prognosis. Fear of sleeping, because my baby had central apnea and would quit breathing at night. Fear of giving her the medications she needed, because she would choke. Fear of admitting how exhausted and overwhelmed I felt. Fear of the judgement. Fear of the people who made me feel like being anything less than positive, meant I was complaining or ungrateful.
The anxiety that came with the fear was just the icing on the cake. I have two little girls who move to beat of their own drum in life. With their medical issues, as well as, their one of a kind personalities. This lead to so many appointments that left me feeling defeated, stressed, unheard, and sometimes like I had lost my mind. I would go in hoping for help or understanding. Do my best with my sleep deprived, overwhelmed, and anxious brain to explain “Why I was there”. To be met with that doesn’t make any sense, or I think you should see this specialist. (Who would eventually pass us off to someone else). Or my most favorite, you just need to try this… Usually it was the thing I had already tried a million times with no success. Which was “why I was there” in the first place. Despite immense efforts, there were times they would treat me as if I just wasn’t trying hard enough. So many times, there were things going on that they just didn’t understand. Of course, they were not willing to admit that. Or, they were so focused on the fact that I looked so worn out and anxious, that they failed to give my kids the attention they deserved. Not realizing, that being stuck in a tiny room, with two small kids, and no help for over an hour, before even seeing the doctor wrecks your brain.
I have diagnosed PTSD from so many things in the early years of this journey. Multiple hospital stays, multiple surgeries, multiple emergency situations, sepsis, blood transfusions, feeding tubes, medications, the list goes on and on... That gut-wrenching feeling, when they stepped out in the middle of a huge surgery and had that look on their face. The look that stops your breath, and you just know before they even have the chance to tell you, that something isn’t going as planned. Resuscitating my youngest, while I was home, alone, and she was 8 weeks old. With my two-year old napping upstairs. This was the baby I had begged and pleaded with to quit screaming, she screamed all the time. But all I wanted in that moment was for her to scream. She had choked on a .25ml’s of a medication, because she struggled coordinating a suck, swallow, breath pattern. The panic attack that set in, once I knew she was okay and I just couldn’t hold myself together anymore. She choked all the time, on everything! To this day, when I hear a baby start to cough a certain way, my body has this visceral reaction.
Over the years, with the help of friends, my therapist, my husband, and my medications (yes, I said medications, I am not afraid to admit that), I am now in a place that I can talk about these things. I have learned I can admit when I am not okay. I have also figured out that medical professionals, put their pants on one leg at a time, just like everyone else. I have learned that sometimes it takes you advocating in a way you never thought you would be capable of. Fighting for second, third, fourth, and fifth opinions, because you have this undeniable feeling in your gut that something is still going on. Most importantly, I have learned that I know my children better than anyone else on this physical Earth. I don’t have a medical degree. Hell, I still haven’t even finished my bachelor’s degree. But I without a doubt have Mother’s intuition, and that intuition is strong, unrelenting, and at the end of the day purely Bad-ass!
So, trust your gut mama. You know your kids. You know your struggle. Please, find people in your life that you can call and say, “I am not okay” or “I am losing my sh*t today”. A person that listens to you vent, without judgement. Whether it is a friend, or a therapist, or even just a stranger that falls victim to your word vomit, because your brain doesn’t function in social situations anymore. I know that is easier said than done, but that village is a key part to this journey. If you don’t have anyone physically in your life, join a Facebook group or online community. I have some amazing women in my arsenal that I have never even met, thanks to online communities. Who just understand and “get it”!
Mostly kick that fear to the curb. You are not perfect, and you are not going to be. Give yourself grace, this journey is hard one to walk. But it is also one of the most rewarding journeys I have ever experienced. I have survived every single day of this journey, not always in the prettiest or in the most graceful ways. Some of those days were just downright ugly, and I could hardly even function. That is because I am a Bad-ass, just like you! On the good days and the bad, you are without a doubt the parent your child needs! You are never alone, and you can do this!
Little bit about me:
I am a stay at home mom of two special needs daughters. Both of whom, have rare and unique conditions. That have taken years to figure out. Teaching me so much about life along way. They have, and still are shaping me into a strong and resilient woman. They are my own little personal heroes, and my life would truly be boring without them. I am learning to be unapologetically, my hot-mess, gym rat, coffee loving, no filter self, and sharing what I learn along the way