Being a Mom, particularly a first-time mom, is hard no matter how you look at it. Pretty much no sleep, persistent diaper changes, laundry, holding, cuddling and rocking your newborn, and regular feedings around the clocks and, lots of time being alone, with the exception of the baby. These changes challenge and stretch you in ways that you have never known or imagined.
If you’ve read my past posts, you know that my son was diagnosed with craniosynostosis when he was only a few months old. This makes me a mom of a “sick kid”, a mother of a child who has physical or mental challenges or differences that requires help from one or many specialists for a given period or for the duration of their lives.
Being the mom of a sick kid also means lots of appointments—pediatricians, specialists, trips to the children’s hospital, etc… in addition to your already crazy schedule. It means having to be an “expert” on your child’s condition for all the other healthcare professionals not directly involved in your child’s case. It means learning to be a researcher, an advocate, and a professional receptionist sweet-talker. It means worrying if your child’s ear infection, fever, or headache is just that, or if it is somehow related to something else. It means explaining their diagnosis to people. It means being told on one hand how blessed/lucky you are because things could be worse, and on the other being told how strong you/they are for getting through it.
When your child’s issue results in a physical difference or the need for correctional devices, you get looks and comments from strangers. The looks vary from confusion to pity. The comments are usually some sort of well-meaning vague encouragement. When your child’s issue results in no visible difference, you find yourself trying to explain their actions or behaviour when they do something that is not “normal” for their age. People don’t mean to be this way, it is human curiosity and the need to make connections that cause this. However, it may make you want to stay out of the limelight as much as possible.
Some kids with craniosynostosis end up with helmets, as do kids with other health issues (such as Plagiocephaly- flat head syndrome), to help shape their head following surgery.
There’s no hiding a helmet. No matter how cute you paint it or how many stickers you buy, it’s still a helmet on a baby.
At times we’d go to playgroup or the park and I felt like I had to educate a host of moms (or dads) when they “thought” they knew all about helmet therapy. They’d tell me how their child “was supposed to get a helmet too, but all we did was re-position him in the crib and do X, Y and Z and when we went back things were better!” [Insert internal eye roll here] “…not the same thing…”, I’d answer (as nicely as possible) and, at least on a good day, I’d explain briefly what cranio was. Then there are the people who think they know more about your child than you, with no medical or educational background on their diagnosis and no personal experiences. The ones who have suggestions on how to address certain things that they knew very little about. Those people frustrate me.
Other days, I would want to cry when kids would ask their parents in hushed tones about the helmet or worse, not want to play with my son (kids can be such jerks at times). I became so used to seeing him with his helmet, that for weeks after it was removed, he looked different to me. I mean, he wore it for 23 hours a day/7 days a week for many months. For those kids, my child was some sort of freak. He had a helmet on and he wasn’t riding a bike or playing a sport, it was weird. It didn’t matter how tough he was, how strong he was, or how smart, loving, or kind he was. He would be treated differently. This wasn’t every kid, and it wasn’t all the time, but when it happened, it hurt. It frightened me—how would kids treat him in the future when they saw his scar. I hoped better, but I wasn’t so sure. I’m still not sure.
Can I tell you the truth? Being a mom of a “sick kid” is exhausting. Yup—I said it. Say whatever you want about me. It is mentally, physically, and emotionally exhausting. Besides having lots to do, you sometimes find that you don’t have much time for yourself (or without planning it way in advance). I mean things like your own medical appointments, getting a haircut, going to the movies, etc…
There is no #SelfCareSunday when your child has been diagnosed with something, because no spa day, pedicure, walk or aromatherapy removes that stress.
It may make you feel better temporarily, but it is hard to turn off your mind even if your body is being rejuvenated. At times you don’t want to leave your child with anyone else for fear that they do not understand your child’s “special case” or all their idiosyncrasies. At times, you feel guilty about having a good time knowing that they are possibly uncomfortable or may never experience what you take for granted.
When there is something wrong with your kid, you feel like you should be there at their side all the time, because, well, society expects you to be there. Time for yourself means time away from your child who always needs assistance in one way or another (even though, in many cases, they may be fine to do certain things without your direct help).
Society expects you to sacrifice, to be selfless… ALL THE TIME! No complaining. Ever.
Complaining means, that somehow you are not able to handle the pressure, that you are somehow a terrible parent for being ungrateful or that you are exaggerating the situation. So, you have to keep that inside, or find some place to release those feelings: a therapist’s office, the gym, with a box of oreos… whatever. As much as you can, you must try to be happy and smile—not for your child or your family, but for those around you. Sadness makes them uncomfortable, and you don’t want to alienate anyone more than you or your “situation” already are, so you try to keep things upbeat and bubbly. This makes everyone happy –except for you, because you cannot be completely transparent with someone else (perhaps other than your partner). All of this is exhausting!
People who know you well enough may offer their help, but really, you’re not quite sure what they can help with—many issues are ongoing, and if they are not, any new problem that may arise, whether you know it is related or not, throws you back into that cycle of worry. Lasagna would probably be nice (let’s not discount that not having to cook, clean or do outdoor work is always a bonus), but not if it comes with a side of pity, or further questions and worry from anyone else.
Maybe it’s difficult to articulate, because the help we need is not always or only physical.
Sometimes, it is a reminder that we are not alone --that we have a community, a tribe, a village. People who are there silently (or loudly) supporting us. People who not only check in via social media, e-mail or texts but who call, and won’t get offended if they need to initiate that conversation more than once. Friends who drop in with your favourite snack or beverage just to let you know that they are thinking of you. People who fill in those gaps in your life without you having to ask because they are present enough to notice them. People who let you vent without judging you. That’s what’s needed. Whether you have been through the same thing or not.
I can say all of this because I have lived it, I have felt it, and I have spoken to others that are in similar situations that feel the same. Of course, parents may feel differently because every child has a different issue and severity may vary. But there are some things that don’t change—the fact that nobody can/should have to struggle alone. Our kids, no matter how complicated their situation may be, will always mean the world to us—but we’re not perfect parents or superheroes. We know that we don’t have a perfect family, or perfect kids. Sometimes we are okay, and other days we feel a bit defeated. We know that this is all a part of our journey, but it is still sometimes difficult to wrap our heads around.
If you are a parent of a “sick kid”, and you lack support, I encourage you to tap into your community and hospital connections and resources and maybe even join an online community (they may be strangers, but that may make you more comfortable). We need people in our corner to listen, to understand and to help (yes, you can use your knowledge to help others struggling). If you are part of a parent’s circle, make sure you check-in. We need love, support, and encouragement to get us though.
…oh, and I will still take that lasagna, just hold the pity….
“No one is useless in this world who lightens the burdens of another.” ― Charles Dickens