When she was born, I was going through a rough time in my life. My marriage was shaky, my very best friend had dumped me, and I was both anxious and depressed. Bad combination. But then SHE came into my world and my heart just exploded into life. The fog lifted and I couldn't wait to wake up every day and to dress her up and take her out. To show her the world. Every day was beautiful. I'd never felt so in love and loved, so needed. I had so much purpose. All other relationships took a back seat to my child. She was the sweetest little thing. Soft cries. Big smiles. And as she grew she just got better. Funny. Friendly. Gentle. Sensitive. Smart. Kind. Super chatty. My mini me.
Eventually my marriage got stronger, I made new friends, and our little family grew. My days grew longer and my heart grew wider. I loved all of my kids equally but she'd always be my first love.
I enjoyed my SuperMom label. I volunteered. I signed them up for all the things. Seriously, all of them. As many as would fit into my days off from work and we could afford. I drove them anywhere and everywhere. I did field trips, I managed teams, I hosted play dates. There was cleaning, cooking, crafts, and social media posting of all of our triumphs, filtered of course.
I did my very best to protect them. From bullies. From strangers. From the harsh realities of life. Even from themselves and each other. You'll only be little once, I'd tell them, no need for you to grow up so quickly. Blessed and lucky is how I felt.
When she was 12, after a series of unexplained events and many medical tests, we got the diagnosis. Rare. Incurable. Life-threatening. Hereditary.
My anxiety hit an all-time high and I went into research mode. It was the only way I could deal. I read everything and anything I could. About the condition. About the drugs. About the prognosis. About her specialists. About the symptoms and deaths. About the research. I studied charts and graphs. I learned medical jargon. I joined support groups. I read other parents' struggles and fears. I mourned their children's deaths.
I tried to figure out how to tell people, IF I should tell people. How I could explain it to her, to her siblings. How she could explain it to her friends, and then only if she wanted to.
I found it hardest to tell our family, her teachers, her coaches, and her friends’ parents. These people would have to keep an eye on my child when I wasn't around and make sure her heart didn't stop beating. And if it did, they'd have to know how to save her and make sure she came back to me in the same condition I'd delivered her to them in. My first love. The thought was unbearable. The pain of the imagined possibilities made me physically sick.
I found it harder and harder to sleep at night. I started having this dream. The same one. Over and over. Each time she was dying in my arms and I couldn't save her and no one noticed and no one helped me and no one heard my screams. I knew she was dead in my arms and yet I kept doing CPR and it wasn't working and no one would bring me a defibrillator or call 911 and I'd wake up sobbing and drenched in sweat. The pain was so real and the dream was so vivid. I'd check on her all night to make sure she was ok. Then I'd paste a smile on my face in the morning for her and her siblings and keep it there until I could cry and rage about it later. Or not sleep. Or dream my dream again.
I also had a lot of anger. I would recall all of the kids who had ever been mean to her, and I would feel a resentment and a hatred so strong that it was surprising, and a teeny bit shameful too. Before the diagnosis I was generally happy, easy-going, and mild mannered. No longer. IDGAF. Or else I'd give too many of them. Caregiver stress. Anticipatory grief. Five stages of mourning. These were terms that my therapist threw out. Antidepressant prescriptions were filled as were sleeping aids.
It's been over a year now and we're still working through our new normal. I have a better handle on my emotions now and I sleep better at night. I push my sweet child to let me in on her thoughts and emotions and we talk it out, or we sit and cry, or we figure out strategies to deal with the little shitheads at middle school. (I'm still working on that anger).
My priorities have changed. I've made peace with never having a clean house or all of the laundry and dishes done. Like seriously never. Though I guess that wasn't that important to me before either because it never happened. I've made peace with it now, though. Did I mention IDGAF? I volunteer less now, though it still feels like I'm doing a lot. "No" is in my vocabulary and I use it more often. I don’t post as much anymore either, though still more than my kids would like. I finally see the benefits of experiences over stuff and I've cut some toxic people out of my life. I'm okay with never being a SuperMom because I know I'm a strong mom instead and seriously, isn't that a better label?
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