I anxiously waited as a nurse waved an ultrasound wand over my belly- after raising a boy for two years I was beyond excited to learn I was having a little girl. I could already see us twirling around in tutus, going to ballet and having a little princess following my every move. The ultrasound showed no obvious problems and at twenty weeks we were confident that the threat of miscarriage was behind us. I finally let my guard down and celebrated this beautiful baby girl growing inside me. When Annebelle was diagnosed with epilepsy and developmental delays were expected our world was forever changed. Walking into the NICU while my daughter was pushed on a gurney by paramedics was surreal, she was born perfectly healthy four glorious days ago.
When I was told of my daughter's prognosis my world was shattered. This beautiful perfect baby now had a life of uncertainty before her and I didn't know how to navigate it. Once I had time to process what was happening I jumped right into mom mode, I was going to do everything I needed to for her. I put my feeling on the back burner and focused all my attention on getting her better and bringing her home. When she was finally released from the hospital we settled into our new life as best we could. We knew the signs to look for if she had another seizure, I joined support groups to help me navigate and ignored all the feelings of sadness and guilt. Annebelle was enrolled in therapy to help her learn things that most babies learned naturally, Tanner loved his new baby sister and helped anytime we would let him. We seemed to be trucking along and adapting to our new life, I had decided that we were going to accept our new life and not look back. My new strategy of ignoring all the bad seemed to be working, until it wasn't. I could feel myself being overwhelmed with all the emotion that I had worked so hard to push down. Tiny moments would break through where I would think of the life I thought she’d have- being at a friends house and watching kids that were younger than her but greatly surpassed her developmentally. These feelings of disappointment and sadness were becoming harder to stuff into the deep hole I had created for them.
Everyone starts to picture their future when they learn they are having a baby- running around in the sprinklers, playing dress up and having tea parties, waking you up on Christmas morning to rush to the tree and see if Santa came- it is natural. It also natural to think about those moments as a parent of a child with a disability and wish that your child was able to experience those things. Mourning this fantasy life that I built in my head was a hard but crucial step in accepting that my new life was just as wonderful. I had to learn to take the time to know that it's ok to wish all these amazing childhood experiences for my daughter and then realize that her experiences are going to be just as amazing, just different. She can still join ballet and go through sprinklers and trick-or-treat on Halloween, just in her own way. It took me mourning the life I thought we’d have to really appreciate and fall in love with the life we do have.
We have settled nicely into our new life, we have a routine and all of the challenges we face have become part of our “normal”. I have embraced this new life and come to peace with the fact that Annebelle’s childhood won’t be like mine our yours. Don't get me wrong- if I could take away the pain and struggles that cerebral palsy has given her I would in a heartbeat- but I don't feel like her life is any less because she has a disability. When your child has a disability or medical condition you instantly know that it doesn't affect how much you love them- but admitting that this is not the life you envisioned for them is a dark secret that you keep in fear of being a bad mom.
It is okay- and important- to take time to acknowledge that your life has taken a sharp turn, and that things are just as beautiful here.