It’s been 5 years and 5 months since Scarlet was diagnosed with Spinal Muscular Atrophy. She’s a type 2, so her life span or “expiration date” is a little more typical to you and me. But more on that later…
You’re here reading my first ever blog because my little girl has sparked an interest in you, whether you relate to her and her disability, feel sorry for her (in the nicest of ways, I’m sure ☺) or because of curiosity. Or, maybe you already know her. Trust me, I’ve been all of those people before. And if Scarlet has taught me one thing, it’s never to judge what you see. Empathy and understanding for ALL viewpoints.
So I’m here (on the request of my mom) to share my life with Scarlet. She’s 6 years old and pretty much exactly like your six year old. She watches other kids play with toys on YouTube, learns new fortnight dances with her friends, doesn’t want anyone to know she’s going poop, yet calls out every fart like a triumph, she BEGS me to not go to school-until she’s at school and begs me to enroll her in Primetime so she can stay a little longer with her friends to play… she’s sassy. She’s smart-assy. And she is REAL. You will never meet a kid who’s more in tune with herself and others. This truly is Scarlet’s world and we all just live in it. I really can’t wait to share this kid with the world. She’s my Scarley-Barley, my kiddo-bean, my little munchie. And I am her mama.
So, without further ado, I will start from the very beginning.
Scarlet was born at 40 weeks and 1 day. She was nearly 10 pounds and took 2 full days to make her entrance. As with almost all SMA kids, I had no idea anything was wrong with my perfect little potato-baby. Her face was smushed and swollen like all other babies. She had all 10 long fingers and all 10 fat little toes. Her first identifier was her bright red lips, that just about sealed the deal in naming her Scarlet. She was perfect.
It wasn’t until she was almost 3 months old that I started asking my mom some questions (other than the typical 92 phone calls to mom in the early days of new motherhood). Why wasn’t she doing anything? Was she autistic? She had interest in things away from her but opted to just cry instead of attempting to go reach for them. She wouldn’t lift her head during tummy time. She lifted her fat little legs up to her mouth to suck on her toes a few times until the one day she just…didn’t. I took her to all the appointments they told me to, I did everything the books said and yet, she just wasn’t living up to their expectations. Eating was a struggle for her. She wouldn’t latch on the breast, so after weeks of frustrations and multiple bouts of mastitis I just pumped and bottle-fed. I was exhausted making her do anything. My mom lovingly called her “Lazy Mary” because she was so content in just BEING there.
I plugged along with lots of questions and concerns that her pediatrician shrugged off as “normal range of development” and “all kids do things in their own time” ..so that gave me just the right amount of ignorance to keep plugging along.
The moment i recall needing to “do something” was on a beautiful Spring day in May when i had agreed to babysit my mom-friend’s daughter Lucy while she was working. Scarlet was 6 months old, as was Lucy. I think they were 2 weeks apart in age. Within an hour of having Lucy, i was practically in tears…she was sitting up…she was grabbing toys that were just out of reach…she was making efforts to stand against the coffee table un-assisted, her legs had resistance to them when she was picked up, like she was on a pogo stick mid-air. She scooted on her butt across the living room. And Scarlet? Scarlet was laying on her back, frog legged, playing with her same little 1 ounce infant shaker she had played with for months. She refused to do anything else. She simply could not do anything else. After crying, wallowing, knowing something was wrong, I went where any 20 year old mother went-Google. I pretty much chalked it up to a condition called “Hypotonia” which essentially just means “lack of muscle”. Kids with this condition had a rag-doll like appearance, and almost no ability to use muscle. Problem was, hypotonia is just a symptom of many diseases, injuries and syndromes. It’s not its own diagnosis. So I had to figure out what was causing the hypotonia. My mom did some digging and we ended up with a school-district appointed Physical Therapist that was part of a program called “Early On” through our district. Even though Scarlet was not school-age (only about 7 months old by this point) she was still in-district as a student and qualified for similar services as she would receive one day when she started kindergarten. The whole team of therapists came to evaluate Scarlet and decide exactly how much care and services she would qualify for. These women ended up being angels on earth, guiding me though some of my darkest days. More on that later also.
But at the time, they were strange women in slacks and loafers showing up to my door to do some baby jazzercise with my kid and tell me what was wrong with her.
After an hour or so of failed exercises, hidden concerned looks, medical jargon to one another that included ones i knew such as “chronic” “severe” and “disability”. We set up a standing appointment of 2x a week for Scarlet to get FREE services (thank youuuuu Walled Lake schools!) maybe she would grow out of it!!!! Hahahahaha. What a thought.
They led me to an outpatient pediatric physical therapy center for another opinion, and a necessary referral for insurance purposes. They knew Scarlet needed to build muscle if she was to catch up with babies her age. Hypotonia was agreed upon and off we went to meet with this other Physical Therapist for another consultation.
That therapist ALSO concluded that Scarlet had hypotonia, and it was at that appointment that i first registered a possibility of “Muscular Dystrophy” ….what? My baby? I thought only women “of advanced maternal age” had babies with special needs? I was 20 years old, healthy, and normal…we had no family history of anything abnormal. It was too much for my brain to wrap around, because in between these appointments Scarlet was still a needy baby. I still had a job, a house, family, friends, and responsibilities. It was A LOT.
Our second PT, Mary, had recommended at our second opinion consult that we see a Genetic/Metabolic disorders specialist at Children’s Hospital of Michigan to get a firm diagnosis. A DIAGNOSIS. For my sweet (now) 8-month-old daughter with huge brown eyes and gummy smile, who loved to chew on frozen strawberries and throw peas all over the floor with a belly laugh. She had a DISEASE.
My first thought:
What have I done to her?. What did I, as her mother, ever do so horribly wrong that i cursed her with an unknown muscle disease?
Luckily, with the dang appointments downtown that took over an hour to get to, 2x a week school therapy appointments, 1x a week outpatient therapy, and work kept me plenty busy to push anything “bad” from my mind. Until we met Dr. Jiang. It took weeks to get an appointment with Dr. Jiang. He’s a specialist in genetic diseases and was pretty much guaranteed to figure out the cause of Scarlet’s hypotonia. I remember not sleeping a wink the night before her appointment. Knowing i was hours away from learning what my future held…it was horrible. Before meeting with Dr Jiang he had requested a few tests prior to our appointment. Scarlet had to be sedated for an MRI of her brain and have a few blood draws. Nothing crazy. I threw up the morning of her appointment in the hospital bathroom, at 9am because my nerves were shot. I was shaking, anxious. A complete wreck. We went in the room with little lady big stickers on the walls and sat on the crunchy paper cover. Nurses took Scarlet’s vitals and told corny nurse jokes that i fake-laughed at, all the while searching for the nearest trash to puke in again. I was probably green from nerves.
Dr. Jiang finally came in the room, along with his translator (he was from China and didn’t appear to know a lot of English) he looked at Scarlet, looked at her paperwork and labs and goes, in his broken English, “I’d put money on the fact that it’s SMA. Probably type 2, just by looking at her. It’s terminal. There is no cure. Just need blood work to confirm”. He left the room after being in there less than 5 minutes and his Genetic Counselor stayed and asked if we had any questions.
What the fuck was SMA? My head was screaming, I’m sure my eyes were dark and blank. That’s how they felt.
I did not have any questions. I had a tidal wave, a tornado, a hurricane and an earthquake in my brain. All I heard was “terminal”.
I lied and said “no questions…but…what now?” I probably sounded like a completely ignorant-just-barely-beat-teenage-pregnancy mom. Because I was.
I was drowning.
They escorted us to the blood lab to draw some more of Scarlet’s blood for one final test. It was a DNA test, and 100% accurate. I sat like a lump. I couldn’t cry, I didn’t know if i should or not. Who do I call? What now? The nice genetic counselor asked for my contact info and told me she would call in 6-8 weeks with results. SIX WEEKS????
It was not 6 weeks. She called me in 2 weeks. It was indeed SMA. And Dr. J was right, it was type two based on her number of SMN2 (we’ll get to those later) In that 2 weeks I had already become a WebMD expert on Spinal Muscular Atrophy, and how my sweet toothless (now) ten-month old was going to die before her 8th birthday. IF, she even made it that long. I had already spent more than a week sleeping the entire day away, ignoring phone calls, leaving the drapes closed, neglecting all the house work and opting to just sit. I quit my job, anticipating a life of misery, taking care of a miserable little girl who would grow hardened at her lifestyle. Watching her peers play while she was stuck. There was a stigma that special needs families hide away from the world. Always stuck inside with a child who can’t live without them. I spent 9 months nurturing and growing this little being that I would only get for a short time. Her life in the mean time would be sad. I pictured a 3-foot casket. I pictured a beautiful angel on her grave and all the trauma and heartbreak that would lead to her needing a grave.
I was literally grieving the death of the Scarlet I thought I would have. The scarlet I had dreamed about for 9 months. Dance classes, water parks, shopping sprees. That child was gone, and eventually, the new Scarlet, the Scarlet that she is, would be born. And let me tell ya. If her first (actual) birth wasn’t eventful enough, the slow rebirth of Scarlet Hope was far better than i would’ve ever hoped for. I wouldn’t trade Scarlet for anything. I am me, because of her. And she has taken us for a heck of a ride that’s not even close to being over with.
So that’s the history on Scarlet’s condition. In 5 years and 5 months she has shown countless people a different perspective on life, she’s sweet talked even the toughest of men into shaking their booties, doing the hokey-pokey. She’s brought smiles and laughter to the elderly, politicians, and community leaders. She’s become the face of a million-dollar 501(c)3 organization raising money for a barrier-free playground benefiting any child of ANY ability. She’s had spinal taps, casts, braces, and therapies that look like medieval torture devices, she’s endured growth spurts that cause so much pain a grown man would cry. She’s been hospitalized for months and been through procedures that any one of us would have the right to throw the towel in because of. But, she’s done all of it with a sunny attitude and positive outlook on life. She’s done it all with a knock-knock joke that would make a dad blush. She is one of a kind. She is inspiring. She is Scarlet. She is truly the light of my life and i can’t wait to share her life with you.