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Originally posted on The Unbroken Smile, May 25, 2018
Having a sick kid is hard. It is hard on the child who doesn’t want to be sick. It is hard on siblings who crave the attention given to a sick sibling or whose normal life is interrupted as parents scramble to find support. It is hard on Dads who have an instinct to protect and fix the problems they encounter and it is hard on Moms who hold things together and care for the whole family and all of the pieces independently. I cannot speak to the burden of Dads except to say that it is heavy and can collapse an entire worldview and set of life expectations. I also cannot speak for all moms or all families as roles vary and some folks are just stronger than me. But, as a short term illness becomes something, or maybe multiple things, with no cure or clear path of treatment, the strain on all involved seems to grow exponentially.
“But, as a short term illness becomes something, or maybe multiple things, with no cure or clear path of treatment, the strain on all involved seems to grow exponentially.”
I remember the first time my son was sick. He was about 3 months old and wound up with strep throat. He was miserable and I was on full time mommy duty. It was exhausting to see him in pain and have a limited number of things I could do for him. But, it was strep and we know what to do for that. As he began to run a fever and not eat well, I took him to the doctor. The doctor looked at his little throat and sent us home with an antibiotic and instructions on what to do to keep him comfortable. When it turned out he was allergic to the antibiotic and wound up still sick with strep and covered in hives it was a curveball, but one that was managed easy enough. Within a week he was back to normal. I breathed a sigh of relief and went back to normal. It was stressful but, short lived and while, at the time, it seemed a bit flustering, looking back, I see it was just a tiny bump in the road.
“Life curves, learn to swerve.”
These paraphrased lyrics from Rascal Flatts have long been a favorite saying of mine. At our wedding when we danced our first dance to “Along the Broken Road” we knew already that life rarely goes the way we think it will and that learning flexibility is vital. Inflexibility leads to sadness and anger because it doesn’t stop change from happening, it just makes your adaptation slower and more painful. The road, all the roads, are “broken” and learning to handle and occasionally even find joy in your place on the journey can be incredibly hard, especially when, instead of a short jaunt on a challenging road requiring a white knuckle grip, you find yourself on a road trip with no end in sight along an incredibly broken road. That is what it is like for me as a parent of a child with a number of chronic illnesses, some of which are genetic, that will be a part of his life, of our lives, forever.
Forever.
Chronic.
Life-long.
Forever.
We are no longer in a short skirmish with a health issue that folks know how to treat. We have wound up in a world where doctors look up your condition in a textbook or on the internet as you walk in the door, doing their first research in order to advise you. Advise the momma who has logged serious research hours, we’re not talking about just WebMD type sites, but reading the current study data from the medical journals and attending conferences put on by specialists in the field. Because, that’s what we do. Moms (and Dads) of sick kids need to know more than their doctors might know in order to be prepared to advocate. It is our JOB to protect our child and sometimes that means protecting them FROM the folks that should be there to help. Sometimes that means advocating for your child against doctors, hospitals, schools, and even family. The burden that falls to us is being the sentinel that determines on the best information and resources possible what treatment to try, what doctor to trust, what therapies to attend, and how much you can do with the resources available. And sometimes, we make the wrong choice. And that, more than anything, nearly breaks us.
It is our job to be strong. To be comforting. To be supportive of our sick kid. To balance the needs of multiple relationships with other kids, spouses, family, friends, all while single-mindedly working to give our impacted kiddo a quality of life that is worth living. We may have to work to provide income and health insurance. We may have lost our job or had to quit due to care-taking needs. We may struggle to keep a marriage alive, we may have a strong partner, we may be on our own, we may have had this change due to the demands of raising a sick kiddo. It is our job to minimize the impact that our financial situation or other struggles have on our kiddo, to protect them and allow them to be a child as much as possible, even if we feel like the world is coming apart.
These are the expectations and they are terrible. They are impossible. They are our lives now.
These are the expectations and they are terrible. They are impossible. They are our lives now. We are no longer mom – the lady that gets them up and ready for school, provides food and comfort and homework help and goes about life taking care of the needs of children, which are already a rather extensive list. We are now, not only all of that, but we are a chief researcher, a provider of therapy services like OT, PT, and Speech. We are a taxi service to the wide range of therapies, doctors, and specialists. We are the keeper of medical records, the tracker of allergies, the educator responsible for not only educating the public about a disease they don’t know about but also an advocate for our child to receive an education despite their health challenges.
So, if you are feeling overwhelmed, if you at times feel so defeated that you cannot see how you can possible live up to these new roles and expectations, know that that is okay. Turns out you’re human and you’re not alone.
You are not alone in feeling overwhelmed, in searching for help, or for needing it.
We are, like that little fluff ball in “Horton Hears a Who”. Our voices may not always be the loudest, but we are here. You are not alone in feeling overwhelmed, in searching for help, or for needing it. Please, know, whatever you are going through as a mom (or dad), there are parent support groups out there hollering, “We are here!!” at the top of their lungs from that teeny tiny speck. We don’t know everything and we can’t always ease the burden, but sometimes knowing you are marching in line with others engaged in the fight, can be enough to help us keep on carrying on.
Sending you, moms and dads of sick kids, so very much love!
Love Always, Meg
