In all my years, I never envisioned living life with steadfast grief. Not grieving the loss of a child. Grieving the loss of the life I saw for my child. Grieving the loss of the life I envisioned for my family. I am the firstborn...type A...the rule follower...a closet organizer. I appreciate and crave order. But grief has no playbook. And it leaves behind one hell of a mess. Denial Zella the zebra came into this world in mostly the same way as her older three siblings. There was no fanfare upon delivery, just another silently breathed prayer of thanks followed by a slew of sleepless nights and tongue-tied nursing struggles. The diagnosis that followed her arrival nearly 18 months later caught us off guard. We were determined to make the most of it, and honestly as an ... [Read More]
parenting
My Favorite Recipes in a Pandemic
With the threat of COVID-19 and our subsequent quarantine, for the first time in my life I have found myself with time in the kitchen. Skill? Not so much. Patience? Ha. Below are a few favorite recipes I have discovered over the past five months of lockdown. Life Changing Peas Peas? Bear with me. Yesterday I was scouring the garage chest freezer for a green side dish to add to our chicken poppyseed casserole dinner. Usually I'll throw some frozen green beans in the instant pot, but all I could find was a ginormous bag of frozen peas. I'm still unsure as to when I made that purchase... A quick Google search led me to Favorite Family Recipes and their amazingly simple yet refreshing spin on frozen peas. Although I don't despise peas, I generally prefer to eat them in something ... [Read More]
Minimal Bandwidth
Will your newborn exclusively breastfeed for at least the first 6 months of their life? Does your baby eat homemade, organic baby food, or do you prefer they get their daily arsenic serving from a glass jar of death? Will your 3 year old's speech ever be understood by anyone other than yourself and your spouse? Do you pollute your 6 year old's fragile brain with SCREEN TIME? Have you made the decision about when to get your child a cell phone?When do you plan to allow your child to stay home by themselves while you run an errand? Too. Much. Living in Crisis Mode These are the parenting questions we are faced with every day. But for some of us living in a fog of worst-case scenarios with a medically complex child, we just don't have the bandwidth to process (or frankly care about) ... [Read More]
Another Year of ADNP Syndrome
As we head back to school this week, I am reminded yet again of the truly amazing team of physicians, therapists, teachers, and babysitters that surround Zella daily. Thanks to their encouragement, in the last few weeks of summer Zella has hit milestones we never believed she would reach, namely walking. Simultaneously she has struggled with new self-injurious behavior, but team Z has pulled through and everyone is working hard to cooperatively manage these new challenges. Zella is loving her new preschool program at Apparo Academy. Teachers and staff have already gone above and beyond to make her feel right at home in her new space. If it takes a village to raise a child, it takes a sprawling metropolis to raise a child with ADNP syndrome. The only way to fully recognize the ... [Read More]
