the worst day of my life: motherhood and fear.
I heard words, but my brain couldn’t register them.I had seen this happen in countless movies, when everything goes quiet and there’s a far off ringing in the ears…but here it was happening to me. Unknown tears were streaming down my face, as I asked the paediatric neurologist to repeat herself. She looked at me, with this remarkable look on her face, like she’s never had to repeat anything before. I wanted to scream at her, PLEASE JUST REPEAT YOUR SELF, you bearer of bad news, you scientist with no bed side manner, you wiry old woman with no ounce of tact. I kept those angry words to myself.
She repeated herself, telling me where to go for blood tests, where to take the papers to book an appointment for an EEG and other tests I wasn’t prepared for. This is just what they do, right? They do this to babies, because they are scared, they want answers, they want a diagnosis.
The walls were such a bland, boring beige. The chairs, a neutral green blue, so pathetic looking, they may as well be colourless. Isn’t this a Children’s Hospital? Aren’t things supposed to be bright and cheery?
My angel baby, let me rephrase that, my tiny, little four month old baby, has something wrong with her? She has something wrong with her muscles? Or her nerves? You’re not sure, but you want to test for spinal muscular atrohpy and all these other diseases, you want to hook her up to a machine. you want to draw blood from her again? I am so confused. No one even saw this coming, until I pointed it out. Oh God, why did I point it out?!
This isn’t happening, this isn’t happening, this isn’t happening.
No. No. No. No. God, no.
The trauma of the last week is slowly fading away, but the raw, helpless feeling that took over my mother heart lingers like a bad dream.
I was not prepared to meet such a numb doctor. She wasn’t a healer, but a scientist. She works with brain injured children, I understand that, I can’t imagine what she sees on a daily basis. I am not brain injured, and your words are having a powerful affect on me. I’m drowning in them. I would drink down numbness if I could, but I’m feeling this.
I screamed and sobbed the whole car ride home. Thankfully Florence was with her papa in another car. I wailed at the top of my lungs. I pulled over and Googled “spinal muscular atrophy” and completely lost my mind. I wanted to roll over and die. I wanted to start over. I wanted to claw my face off in rage and terror.
It was not my finest moment. Never have I ever had my heart broken so fiercely. I felt physically ill, couldn’t eat dinner, couldn’t eat much the whole next day. I spent the day in bed, sleeping, tossing and turning, holed away in our cool, dark bedroom where I had spent so many months doing the same thing, when I was pregnant with Florence. I felt the same sickness wash over me, and yet this time I felt pregnant with sorrow.
The doctor didn’t say much but “your baby has weak arms and legs. There is something wrong, I just don’t know what. She has to go through testing, and it could take weeks or months. I don’t think physio will help, I don’t think she will grow out of it. I’m sorry.”
I asked her what the best case scenario was, hoping to save a shred of my dignity, after erupting into terrified sobs. I sputtered out the words, “It’s possible nothing is wrong, right?”
I hope so, she said. But the worse case is that something is seriously wrong. Something like spinal muscular atrophy. She told me to not get pregnant until we figured it out. She told me I could pass it on to my other children. She told me it’s rare, but we could be gene carriers and not know it. She told me the worst and I hated her for it. But I’m forgiving her. Doctors do that, I suppose, prepare you for the worst to cover their butts. Perhaps she likes the feeling of breaking the good news that nothing is wrong after all.
I’ll be honest, everything went through my head that night. Jay and I wouldn’t make it through this, because all our children would be affected by spinal muscular atrophy and die in 2 years. We would get a divorce. I would watch my baby girl lose her life, battling this atrophy, eventually succumbing to the disease. They were brief thoughts, but they tore me apart.
I no longer feel that way but I still feel some terror. I have prayed and cried my heart out. I trust my Father God, I trust that His heart is full like mine is, and that He knew what was coming our way. I know it will be a journey of faith. I know I will struggle and have good days and bad days. I’m getting over the grief, the “why me” syndrome that can cripple me if I let it. I’ve been down that road before, and after years and years, realized that “why me?” is toxic. I’m visiting my old nightmare, in the same hospital.
The neurologist said nothing is wrong with her brain, and I know that. She is bright, healthy and thriving. She is growing, she is chubby, she is developing. She has some weakness, and I understand that she may not reach her milestones “on time.” But I just can’t believe that her hypotonic muscles are a symptom of something else.
There are good days and bad days in motherhood, this I know full well.
“But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.”