Why I Tell Special Needs Parents to Find Their ‘Green-Faced Moms’
When Von was in the pediatric intensive care unit fighting for his life, there were people online raising money for us and praying for us. Our phones were lighting up, and we felt so supported and so loved in that moment. Von survived a scary week on life support, and we went home a few weeks later.
Then it got really, really quiet. People we spoke to all the time stopped calling. We stopped getting text messages from friends who we thought would always be there for us. Our lives became one of doctors appointments, medicine schedules, lab appointments, meetings with social workers and trips to the ER. We got invited to things but always had to cancel. Von’s immune system and lungs just couldn’t handle the exposure to germs.
We stayed at home for months at a time and only saw a small group of people, mostly family. Soon, the invitations to parties, events and even for drinks ceased. I’ll never forget the day I emailed a friend who I hadn’t seen in months, and she never responded. I was heartbroken.
It happened to my husband, too. He got lost in the medical world, and everyone abandoned him except one person. They say you find out who your real friends are when you go through difficult times. It was a punch to the gut to realize my true friends could be counted on less than one hand.
At a routine appointment for Von, his endocrine doctor said to me, “Katie, you need to find support. You need to find friends in the special needs community. You can’t do this alone.”
I was afraid of making friends with other moms with children with serious illnesses. When you see things in the medical world that can happen to children, it can stay with you. I was afraid of entering that world. However, I knew I had to go there because I was drowning on my own, and the sadness I felt was palpable to a doctor I barely knew. So I took a big step and started looking and researching ways to connect.
I found a mom on a Facebook page who told me about a group in my area solely for children with life-threatening and complex medical conditions. Her son also had the same disease as Von. It was a miracle she lived in the same state. She encouraged me to sign up for the organization.
I was terrified and put it off for months. I didn’t want to be that mom in that community. I just wanted to be like everyone else. Finally, after months of feeling horrible, I made the commitment and I filled out forms. Within two months, we got word we were accepted. Shortly after that, I attended my first event and I found friends. I found my people.
I found people I could talk to about medical lab reports, daily pokes, trips to the ER, extended hospital stays, loneliness, isolation and sadness. I could share our developmental milestones with them. They were there with us and had traveled the same path.
One of the moms called us the “Green-Faced Moms.” We’re mothers who don’t stand out in the crowd, but inside our lives are so different, we feel like our faces are painted green. We look like everyone else, but our children are fighting. We don’t relate to parenting the same way the masses do. We don’t worry about minor ear infections or sore throats. Our fight is to keep our children alive. Our fight is to make sure they don’t miss milestones and not to cry when they do miss them or never make them.
Our fight is with the education system to make sure our kids aren’t passed up and get the resources they need to learn. We advocate to the medical community for better drugs, better therapy and better treatment. We often sit at home alone while our child is too sick to do anything but sleep. We sit quietly at their hospital beds after another trip to the ER for a minor illness our child can’t shake at home. We are united in our journey and our path, and together we can get through this. My life changed when I found a group who got me.
I found hope after the first event. I continue to find hope every single day I speak to them and find ways to get through the day-to-day of managing my son’s needs. I can call them and cry and know they get it and have been there. If you’re out there and you see this, don’t do this alone. Get connected and find hope and friendship.
Don’t be afraid to enter the community of special needs parenting. I’m a proud member and I’m so glad to be here. I encourage you to find your “Green-Faced Moms.”
Follow this journey on Von’s Super Hero Facebook page.
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