We are a sisterhood that we never imagined being a part of and never wanted to be in this group. We are a sisterhood united in caring for our children and helping them meet their highest potential. Most of us are stuck at home, unable to hang out due to the demands of our children’s needs. Our relationships are forged in online support groups, through non-profit organizations, and via online blogs and articles. We stand united that our kids deserve the best resources, services, and care. Many of us are stuck in a broken system where insurance dictates what our children will receive. We hope for the best but don’t know what the future holds. The sisterhood of mothers of medically fragile children is the best place to be.
There is no handbook or parenting book about raising a child that is medically fragile. Most of our kids don’t fit a mold. All of our children are uniquely their own. Many of them have multiple diseases or disorders. Our children have rare diseases, and we are their medical experts. When no one hears our child, we are their advocates.
We yell, scream and fight for everything we know our children deserve.
Early on we realize, with a heavy heart, that the world we live in isn’t built for our children. Every day we are fighting someone about some aspect of their care. We fight and launch battles for the services our children need to thrive. Despite our best efforts, sometimes our efforts result in defeat.
Even though many people believe we are strong, we don’t feel strong most days. There are moments that we struggle to get through the fight. In our darkest moments, we cry in our bedrooms at night. In the dead of night, many of us lie awake paralyzed by the fear of the unknown. All we want is for our children not to suffer and not live in pain.
Many of us have met one another at our children’s therapy clinics. We chat in the waiting room of therapy. Our conversations revolve around the latest education and therapy techniques. Other times we meet at the hospital and talk about our child’s diagnosis. Each of these encounters leaves us feeling happy.
We think to ourselves, “these are my people.” We are the group that gets it, and we live in a world that doesn’t seem to understand it.
Why would anyone have to GET this world if they didn’t live it?
These sacred moments together become warm spots in our heart. We know we are not alone, and there is always someone out there that understands our lives.
When new moms enter our world, we stand united in trying to offer support in any way we can. We know this world will chew you up and spit you out. Mom’s with older children mentor those of us that are new. We learn from them, and we listen to their wisdom. When we see another mom struggling with choices, we offer our support and experience.
Since our children are complex, most of us have been through dangerous surgeries. Our homes have enough equipment to run a small hospital. We share that information with each other. Our community only wants the best for our children and above all else – we want our kids to live.
Since most of us are fighting a battle against a disease that we will never beat, we learn the value and beauty of life. Our children’s lives can end at any moment. As mothers, we learn to appreciate every moment we have with our kids. When our children celebrate a birthday, we are thankful for another trip around the sun. Nothing in our world is absolute, and we celebrate every single milestone our kids meet.
Every year that passes and our child lives, we win a small battle. In this very fragile world, we see the true meaning of love. Many of our children have been on the brink of death and come back to life. When our children are sick, our love for them keeps us going. Love is what will keep us moving on the days where the news at appointments is less than favorable. We never give up on our children, and we will never stop fighting for their well being.
Most of us don’t feel strong. In fact, many of us think we are coming apart at the seams. However, we unite together when one is struggling. We lift each other up and remind one another it is OK to cry, feel defeated and be sad. We also tell each other we have to keep going.
No matter how hard our journey is – we have each other. Our path is full of debris and obstacles most parents will never experience. However, we navigate it with grace and courage. We stand together as we move through our journey.
Parenting a child that is medically fragile would be impossible to do alone. While we may not get to spend time together, have play dates, and most of our relationships exist online – we are the village of mother’s with medically fragile children.
A sisterhood of moms that love hard, help with compassion and want the best for every child they encounter.
I hate being here, but I don’t want to be anywhere else.