I was 26 when I met my husband, and my life in front of me glowed with the excitement of building a life together, buying a house, and starting a family. There were two to three children in my mind, all perfect, of course, because why would we envision any different?! We were married in 2008 and our first-born arrived in 2009. A boy, a bundle of awesomeness.
Nineteen months later, a girl, a bundle of unique. The journey was tame to begin with. A simple stay in the NICU for jaundice; however, questions began to arise. Why is her breathing pattern so unusual? Why is her blood so thick? Why does she sweat when she nurses? The doctors discharged her after six days without so much as a follow up to any of those questions. My job as an advocate to my little girl began.
Life with a baby and toddler at home is challenging for anyone. In general, it is the mother who stays home to raise the babies while the father goes off to work. It is also the mother who organizes home life and appointments for the children, even if she herself works outside the home. Mothers are masters of multi-tasking.
It moves away from the norm, however, when you fight to find answers for your infant who is not thriving or developing as she should. It moves beyond normal when you need to juggle weekly appointments with PTs, OTs, SLPs, and various specialists.
Two Divergent Paths
Personality differences emerge in times of adversity. I feel as though there are two paths when faced with difficult situations: you face the problem and find solutions, or you turn your back on them and hope they will somehow resolve themselves.
Three years into our marriage, our shared path hit a crossroad. One arrow pointing towards a life of advocacy and the other towards a life of oblivion.
The first diagnosis came at four months old: NEHI, a rare lung disease requiring at home oxygen use 24/7. The next diagnosis came at three years old: Autism and global delay requiring 15 hours of behavioral intervention weekly. Next up at five years old: FOXP1 syndrome, a spontaneous genetic mutation that includes, and I quote, “mental retardation” (can you even believe they still use that language?), OCD, ADHD, and Autism.
Five years of battling for answers. Five years of juggling appointments, five years of juggling life with now three children, five years of fighting with a husband who didn’t see just how much help I needed despite my constant plea. Two and a half years now of advocating at school for services and IEPs, plus more appointments and out-of-school support. One more child diagnosed on the Autism Spectrum needing his own services and fight.
Ten years of marriage and we exploded. Me, exhausted from doing it all. Him, frustrated from being told he needed to help more.
What Parents Need
I am a pediatric home health nurse. I see many families dealing with adversity. I have seen some families like mine that break apart, and I have seen others who just seem to have it figured out. I give those families kudos, as there is no question about it, the struggle is real when dealing with child with a disability, no matter the severity.
Communication and supporting one another is crucial to surviving the marriage. Sharing the challenging days with one another is as important as sharing the excitement of milestones reached. Being vulnerable, crying, yelling at the world for this “injustice” is all part of the grieving process we go through on the path to acceptance. We all grieve differently and at different times along the journey.
I went through my grieving process very early on. I threw her baby bottles across the room when she wouldn’t drink them but needed to, I broke a chair to let out my frustration, I cried in the shower and in my car, I overate and gained 40 pounds. I took antidepressants to get through the everyday angst, the guilt that perhaps this was all my fault, somehow. I started acupuncture, massage therapy, and exercising for self-preservation.
Looking back, what I really needed was a husband who listened to me; a husband who looked at my anger with understanding instead of asking why or turning a blind eye. I needed a husband who didn’t have to be asked to clean the house because I was exhausted, instead of replying with, “I work, too” and leaving the job to me. I needed a husband who took an interest in her appointments, who took the time to learn the names of our therapists, and to attend meetings. I needed a husband who didn’t diminish the hard work involved in getting our little girl as far as she’s come simply because my job didn’t involve a paycheck.
My daughter is now seven. I still cry in the car. I cried writing this article, but that’s OK because I have also reached acceptance. I accept my daughter for all her greatness, because she is truly awesome. I accept her current challenges and I accept what her future and our future will look like. I continue to fight for her.
I will forever continue to be her voice. I walk the path of advocacy. I wish I could say the same for my ex-husband.