A few days after our daughters brain surgery.
I had dreamed of the perfect life for so many years. I’d be married to a gorgeous, gracious and giving man. We would have beautiful children with zero complications. We would both have jobs that weren’t only respected but also ones we loved. And of course we would never deal with anything that could crush this dream life I had envisioned. I’m sure as you are reading this you’re thinking of how naive it would be for me to think these things from the beginning, but it was my fantasy and I would believe it until someone or something told me otherwise...
My dreams were quickly crushed 4 years ago, when our daughter was diagnosed with an incurable disease called tuberous sclerosis complex. Not only was it incurable but it also came with no true prognosis. All we knew was that our daughter had tumors all over her body. Yes, you read that right, they were everywhere. Her poor brain, heart and kidneys would be the hosts of this brutal disease. As you can imagine this news was gutwrenching to a newly married couple who had so many high expectations for their life.
I hated my life within those first few days of her diagnosis. I couldn’t believe here I was facing some of my worst nightmares. It’s terrible to say but I didn’t want to leave that hospital. I didn’t think I could face bringing this reality into our own home. Days didn’t get much better. She was on medication to stop her seizures and when we did finally get them controlled and weaned her from medication, they came back with a vengeance. I was living in nightmare. I couldn’t handle thinking of what our familys future would look like with this disease. Everything was different. My marriage was on the rocks. My perception of motherhood was tainted and taken away from me. I would never get to be a normal mom. I would never get to experience what parenting a healthy child would be like because I’d always have the thoughts of this disease in my life. Everything was horribly wrong and I didn't have hope that things would ever get better. My life was over because all the joy I ever thought I could have was taken away from me. Things would never be the same.
And guess what? Four years later it’s definitely not the dream life I had imagined. We still face this disease daily, but what has changed is that we have found a way to love this life that we never wanted. How did this happen? Well it definitely took time. And I honestly couldn’t tell you when my feelings and thoughts shifted. But at some point I had a realization that although my heart was broken from this new life, I still had a husband and daughter to live for- they were still here with me!
I knew that motherhood for me was going to look very different than others mothers in my circle. We would have different worries, but we’d still be raising children that we loved. I would be planning hospital stays while they were planning vacations. Maybe they were worried about the dosage of allergy medication, while we were adding or weaning a seizure medication. Were there times I was bitter? Of course- But when I stopped comparing my life to those around me, it freed me from the anger I had carried for so long. I had to be present in this life. I had to find the good even when I didn’t want to, and when I stopped feeling sorry for myself I found out that life around me was beautiful. It’s a different shade of beautiful, but there was an amazing life around me.
I never thought that I could be in love with this type of life, one that comes with so many uncertainties. But I do love this life. My world would be empty without the past 4 years of good and bad times. I am so glad I was able to find a way to love the life I never wanted.