Last night I was walking up the stairs getting ready for bed, and I heard a scream coming from my son’s bedroom. I rushed into his room to watch him shaking his head and gagging. He was crying and said to me, “Mommy, I’m going to spill out.” Spill out is his terminology for vomiting, and I instantly ran into my laundry room to grab a feeding tube attachment and syringe. A massive burp echoed out of his mouth, and I took the attachment and hooked it up to his Mickey button. Air began to rush out down the tube, and there was food coming out fast.
When he realized he felt better, a wave of relief washed over his face. He looked at me in absolute fear realizing he was covered in vomit. I cleaned him up, stripped his bed, and cuddled him up into my bed. For a moment the two of us sat there cuddled, and trying to relax from the emergency that just occurred. He gently squeezed my arm, rubbed my face, and told me that he loved me. At that moment, I felt this incredible sense of peace knowing that he was feeling better and that I had helped him get to that place. I felt an incredible sense of gratitude that I can come up the stairs at the same time he got sick. I knew had I been in the basement at the time; things could have gotten a lot worse.
As we drifted off to sleep, thoughts poured into my mind of all the medical knowledge I had picked up over the past five years of raising him. Before his birth body fluid made me sick to my stomach, and I would get faint when I saw blood. Fast forward to now, and I’m changing g-tube buttons every three months, tube feeding, ventilating the tummy via the tube, monitoring numerous diseases, dispensing multiple medications, and giving him daily injections. It occurred to me that is just the tip of the iceberg. I’m also managing his county paperwork, caseworker, implementing therapy at home, scheduling appointments, and driving him back and forth to doctors and therapists weekly. Oh, and did I mention, we are also homeschooling! Life is no longer about me and my career, but it’s transformed into a world of managing care, improving quality of life, and ensuring my child lives to see another day.
I sat there in amazement thinking about the thousands or even millions of other moms around the world that are in the same position as me. We were just regular people before we had a child that was medically complex, and our kids have turned us into medical professionals, advocates, educators, and therapists. The amount of knowledge so many of us have is more than most people can even understand. I have been in more than a few conversations where I’m talking to a friend about his care, and I realize that I’ve gone just a bit over their heads. See that’s the funny part to me though, I don’t even understand in the day to day that what I know is beyond normal parenting.
Mothers of children with special needs aren’t just typical moms. We are all managing aspects in our children’s care that most people would never understand unless they live it. The world around us revels at what we accomplish, and most of us never really stop to analyze our days. Most of us know we are different, but I don’t think many of us stop to think about how incredible it is that we have all been able to take on such impossible circumstances. For me, it’s just another day when he has an episode of vomiting, gagging and needing to be vented. However, to the average person, the situation would have looked extremely grave and likely scary.
Maybe there is truth in the sentiment when people say we are some of the strongest moms out there?
I know most of us don’t always feel strong. Heck, most of the time, I am hanging on to dear life by a tiny thread that is just about to break. Every day we all get up, despite our fatigue, and we keep on moving and fighting to care for our children. Not all of us are managing medical situations. For some, it is mental health complexities, developmental delays, intellectual disabilities, or rare syndromes that make life more complicated. No matter what our children face, most of us work hard to research and understand how to help our kids. We become the experts on our children. Most of us know far more about our children than the doctors and therapists that have trained for years to help them. Many of us teach those professionals new information daily on what it’s like to live with the child.
Maybe it’s time for all of us to stop being so humble about what it is that we are doing to help our children!
I think we need actually to stand up, be brave, and admit – it’s true – we are freaking fantastic! Our kids are climbing mountains most of us have never scaled, and they are fighting battles we have never experienced. Each day we wake up to help them by advocating, fighting for their services, improving their quality of life, teaching them new skills, and finding ways to remind them that no matter what they are the most special child in the world. We have stress levels that run high, and most of us know the stakes are very high for our kids. Despite all of that, we keep on fighting every day. Yes, most of us are tired, and many of us WISH we didn’t have to do all of this for our children. Many of us WISH our children had a life just a little bit easier, but we never allow ourselves to be STUCK in those feelings. We are boldly walking terrain we never knew before our children, and we become experts in everything about them. Our knowledge is extensive, and we are all aware just what needs to be done to help our children grow and thrive.
So today I encourage all of you to be bold, be brave, and feel emboldened to admit that you are an amazing mother. The strength you have to continue the fight despite your exhaustion is admirable. We all deserve praise for what we do for our children. We aren’t stronger because of the obstacles we face, but we are strong because despite the barriers we face we never give up. Many people would crumble in our situations. It’s time to realize that we are a lot stronger than we give ourselves credit. People think we are strong for managing everything in front of us. The truth is we are strong because we know there is no other choice, and we know that there is nothing else we would rather do for our child. Love is what guides us, and it is love that gives you superhero strength. I challenge all of you to feel that power, cloth yourself in that superhero cape and celebrate the fact that you are kicking serious butt at being a special needs mom.