I have decided within the last two weeks that I am positive about two things.
1. 2020 has been a year from hell and also one of the greatest years of my life in terms of mental, physical and spiritual growth.
2. I need to get back to blogging, or journaling.
Let’s start with point number two. I am going to start journaling/blogging pretty frequently and I want to make you aware of some things beforehand…
Such as, I am doing so in hopes of releasing raw, realistic, vulnerable and emotional parts of my day to day life and inner dialogue throughout this rollercoaster journey called, “life.”
For me, writing has always been a way for me to formulate my words to create some sort of sense because I can’t seem to speak them as eloquently, legibly or clearly without proper time to think through them. I have recently been diagnosed with ADHD, and that allows me to understand that I’m not entirely crazy when I cannot stop the constant, nine person, dialogue that takes place in my head at all times.
As many of you know, my youngest was diagnosed in March of this year with a rare and fatal disease called, “Sanfilippo Syndrome.” There is no cure for this disease and it is caused by her inheriting two gene mutations. One from me and one from her daddy. I have spent the majority of my time over the last eight months grieving, processing it all, growing spiritually and mentally, and fighting to raise awareness and funding for research to find a cure.
Over the course of the last year I have lost my love for and my quiet time to sit down and write. Last night, I promised myself I would begin again today. Mainly, because I know that one day, I will be thankful to look back on my writings and see the journey traveled and reminisce on our life as a family. No matter the good, bad, ugly, cure or no cure, but especially if she is gone… I will want to remember all of the moments.
I woke up this morning, earlier than usual and noticed how beautiful the sunrise was. The sky looked like cotton candy and my coffee tasted equally as sweet. I am the furthest from a morning person but something about this morning just felt, right. My girls woke up, we were all still breathing and Haidyn slept all night long. Haidyn sleeping through the night alone is enough to make me content for tomorrow’s adventures.
Today, was Haidyn’s 2nd day of “back to school.” Kindergarten has now begun during the COVID19 pandemic and after a few months of impossible virtual learning. We all conquered COVID19 and lived to tell the tale, thankfully.
Haidyn walked in with no tears and maybe still unsure of what the heck is going on and wondering if I’m shipping her off because of her shenanigans. I have been a nervous ball of anxiety about sending her back to school and even looked like a helicopter mom when sending her teacher a chapter book about all things, “Haidyn.” All in hopes for an easier transition for not only Haidyn, but her teachers and therapists at school.
It is only day two and if I have learned anything with Haidyn, it is to NEVER get my hopes up and never set my sites on how things will play out because goodness… this chick keeps me on my toes. But, I hope and pray for an amazing school year that provides the structure she craves and lots of social interaction that brings her an abundance of smiles and a belly laugh with such happiness that it infects all of those around her.
After I dropped her off, I drove to the gym and had nothing short of an amazing “leg day.” I walked in, laid in the tanning bed (don’t judge me, I need vitamin D and happiness) to warm up because it was a crisp 34’ degrees this morning. After getting a slight burn because I’m considerably a pale walrus, I popped my headphones in, turned the volume up and tuned out the entire gym and possibly the world around me. I haven’t felt that kind of “normal,” in months.
When I say normal I am talking about infinitely embracing the music pumping from my headphones and hyper focusing on every breath, every rep, every muscle stretch and tightening, every bit of the burn in my legs and counting my breaths during a break from each set of exercises. I am about 99% positive that I sweated enough to release 90 days worth of toxicity in my body and the level of dopamine I held increased exponentially. If you know anything about ADHD, you know how desperately I have needed that increase in dopamine and serotonin. In regards to needing this normalcy, I have learned while being a “caregiver” to my medically fragile and dying child.. that I took such small freedoms for granted. My job as a mom and caregiver never ends. There are no breaks. It is 24/7, constant supervision, changing diapers (yes, at almost six), feeding help and supervision, bathing, cleaning, picking up and holding her hand, assisting her every single need… and so on. To say that I have lost my identity… well that’s probably an understatement.
My workout was so intense and I found myself entirely succumbed to it. I could have continued for hours, except, I thought I might puke towards the end and decided I should throw in the towel for today.
I walked out of the gym and the psychotic, Georgia weather had increased to above 50’ degrees and I then needed to switch from heat to air conditioning in my car. I opened the sunroof, continued to jam out to my favorite rock bands and sing at the top of my lungs like I haven’t done in months. Fun fact, I can actually sing if I try but somewhere along the way I have lost the love for that as well as found myself to be insecure about my voice and I am unsure of why.
I met one of my besties for lunch and decided against a healthy, post workout meal. Wings and sweet potato fries were worth every bit of the uncomfortable fullness topped with some good conversation and girl time that I not only lack but miss greatly.
I picked Haidyn up from school and was informed about how fabulous her second day was. I also received a sweet message from her speech therapist at school letting me know that Haidyn said “baby,” for her several times and also enjoyed just sitting, practicing signing and loving on her. I am so grateful for not only two great days at school but also a staff that loves on my girl and is willing to listen to me as a mother and embrace her for how unique she and her diagnosis may be.
As we left the school, Haidyn seemed happy. Tired but happy. When we returned home she was crazy excited to have her iPad and watch her favorite songs… and of course engulf a snack and a drink. We played peekaboo, sang songs (I sang and she hollered), and laughed every time mama sneezed like an elephant…. allergies, but H thinks it is absolutely hysterical.
We left to go pick up big sissy from school and take her to cheerleading practice. Big sissy was stressing about choreography practice but excited nonetheless and as much as Haidyn adores her big sissy, she seemed to zone out in to a tired phase and could have cared less to show excitement to see her this afternoon.
Haidyn has in home, ABA (behavioral/life skill) therapy in the afternoons after school and the remaining days a week that she is not at school. She spent the late afternoon playing and working (or trying to escape responsibilities) from Michelle, her therapist. Despite her tiredness from her busy day, she was happy, content in all ways and willing to go with the flow of the evening.
We said our goodbyes to Michelle after finishing up a bath and supper. We have started to attempt “wind down time,” earlier now that daylight savings has passed and the days seem to be more exhausting.
It’s 10 PM and my girl is already asleep, next to mama, on the couch. If you know Haidyn, you know that is early and on a typical night she is up past midnight or even throwing a house party and pulling an all-nighter. Sleep disorders are common amongst children like her that unfortunately suffer from Sanfilippo Syndrome. Sleep medication helps but it doesn’t always get to claim a win at night.
I sit here, trying to unscramble my thoughts and pause to look at her… my mind just goes silent. She is so resilient. She has every single reason in the world to be unhappy, angry, frustrated, bitter and miserable. She has every reason to throw in the towel and give up this hard fight that she doesn’t deserve to battle.
But she continues to fight.
She loves. She smiles. She speaks the few words she can get out and she laughs so hard that you can’t help but to laugh along with her. Her joy for life and her wittiness without words is literally to DIE for. Her strength and perseverance to keep on going with a smile on her face is my will to hold on as tight as I can, right beside her.
Today was a good day. All smiles. No tears. We all woke up and continued to breathe in the cool air and soak in the sunshine.
I promise to never take these things for granted… and if I do, I hope God gives me a blunt reminder to be grateful for all the beauty He has blessed me with and even the struggles He has placed in our lives to teach me that I am stronger than any obstacle blocking my view.
November 4th may be a day filled with stress. anxiety, bitterness and pettiness for most due to an everlasting and harsh election year. For me, it was a good day filled with sunshine, normalcy, smiles and giggles. ✨💜
Grace In My Mess 