Guest blogger April Brownlee is back with another serious-but-funny look at life as the parent of a child with special needs. Today, she talks about the special needs parenting obsessions that constantly run through her head. See if what she has sounds familiar.
Special Needs Parenting Obsessions Confessed
I think a lot about how rationally I do or don’t handle my daughter’s medical situation. I try to be proactive with her care, but in turn, am I constantly picking her over looking for something to be wrong? Sometimes I assume she can’t do certain things and then she does them and I wonder do I underestimate her too often? Or do I take it easy on her when she really doesn’t need me to cut her a break?
Finding the Right Balance
It’s so hard to find the right balance, but I feel especially challenged because my child falls into this “”gray” area. She has a syndrome and, from what I can tell, she’s somewhat mildly affected. For the most part, her symptoms can’t be seen. No one sees her spaghetti muscles. No one knows that sometimes she can’t muster the strength to walk another step and I end up lugging 40-pounds of five-year-old and curly hair around. No one sees something discombobulated in her stomach, resulting in all sorts of bizarre GI difficulties. No one sees these things but those of us who care for her. And in so many ways, I think that makes our job harder. No one is cognizant of the challenges Catie faces each day. And if I bring it up, I’m often met with confusion, because
(a) no one knows what Noonan Syndrome is and
(b) is she really that bad when she looks so good?
And since most people don’t see Catie’s issues, if I complain or cry or worry, will people think I’m begging for attention? Will they think I’m exaggerating the situation. Or worse, will those whose children are more affected think I’m pathetic and wimpy?
Questions I Obsess Over
I obsess about these questions from time to time. Not all the time. But sometimes. Like recently, when I decided Catie needs a new stroller. A bigger stroller. A special needs stroller to accommodate her as she grows. Not some ginormous contraption. Just an umbrella-type stroller that will allow us to always have a seat for her. She can walk just fine, but she fatigues easily and has chronic leg pain that often leaves her screaming in the middle of the night. I felt sheepish asking our physical therapist for a letter of medical necessity so insurance will help cover the cost of the stroller, even though I knew she would understand. I felt very ridiculous asking our pediatrician to write a prescription for a stroller. Yet, I felt empowered when I picked up the script with the words “Maclaren Major” written on it. And then, I felt deflated when other parents cautioned me about what people will say when they see a big kid in a stroller. I can read their disaproving glares now.
Good grief. Make that kid walk. I swear, parents today…
And worse, will they think I’m completely malfunctioning when they see Catie in a stroller and her little brother is walking? Probably, considering most people take one look at Catie and have no idea about her condition.
A Profound Tex-versation
Not long ago, around the same time I was contemplating having a pity party for Catie (and for me), I had a profound conversation with my husband’s cousin Leslie. By text. Because, it seems, we mom’s can’t manage to find time for actual conversations anymore. God bless Steve Jobs because I am convinced that without my iPhone I would be out-of-control-unorganized and completely devoid of friends.
Anyway, back to the text-versation. I thanked Leslie for a book she bought for me, which happens to be the original Different Dream book.(Maybe you’ve heard of it?) Leslie’s 18-month old is diabetic. I worry about them. And it was nice to know she thinks of me, too.
ME: Thanks for thinking of me! We moms of kids with issues have to stick together!”
LELSIE: I hate to put myself in the same boat as you because I don’t feel like my struggels compare to yours. I don’t know if I’m in denial about the seriousness of it or if it’s really not that bad. Maybe our struggles are just different. But equally “bad” so to speak.
ME: Oh my gosh! Diabetes is awfu!. I can’t imagine! I think you have it worse than me! But, I’ve learned that no one has the right to make you feel like your trials are trivial. Unless someone has been in your shoes, it’s unfair to judge. And I agree, our situations are different, but bad enough to change our lives forever and make it all so much harder.
LESLIE: It’s funny to me that neither of us would want to swap even though we don’t necessarily enjoy our struggles. That’s why I say each person has to deal with their own situation and can’t compare to other people. Your struggle is yours and mine is mine AND they all SUCK!
Realizations in Hindsight
Looking back on that conversation I’ve realized two things:
- I abuse exclamation points, and
- Leslie and I both shared great words of wisdom with each other, but apparently, we haven’t managed to sell it to ourselves.
That conversation was full of things I should repeat over and over and over to myself:
- No one has the right to make you feel like your trials are trivial. Especially if they haven’t walked in your shoes.
- Our struggles are different, but they’re still struggles that changed our lives forever.
- And they all suck.
But in the end, I’m still so grateful for what I’m constantly learning from all of this. For as much worrying and contemplating as I feel I do, I’ve also come to the realization that it all has made me me so much more grateful for every single minute of life.
Special Needs Parenting Obsessions Confession Time for You
I won’t ask if you can you identify with April’s propensity to obsessively question her performance as the parent of a child with special needs. Instead I’ll cut to the chase and ask what special needs parenting obsessions you grapple with? This is a place where you can share them, knowing others will understand. So comment…obsessively if you like.
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Hi Sarah!
You may already be aware, but just in case, I wanted to mention there’s an awesome online community that supports the Noonan Syndrome family. We have a really active private Facebook group and a Facebook page. Here’s the link to the page: https://www.facebook.com/groups/noonan/?ref=ts
If you’d like to be added to the private group or you just wanna chat, I love connecting with other NS families! Honestly, it is the greatest comfort. And they’re all so knowledgeable and helpful. You can literally ask any question and someone has advice or experience to share. You can e-mail me at thinkabink@gmail.com anytime. Would love to hear from you!
Hi Sarah!
You may already be aware, but just in case, I wanted to mention there’s an awesome online community that supports the Noonan Syndrome family. We have a really active private Facebook group and a Facebook page. Here’s the link to the page: https://www.facebook.com/groups/noonan/?ref=ts
If you’d like to be added to the private group or you just wanna chat, I love connecting with other NS families! Honestly, it is the greatest comfort. And they’re all so knowledgeable and helpful. You can literally ask any question and someone has advice or experience to share. You can e-mail me at thinkabink@gmail.com anytime. Would love to hear from you!
Hi Sarah,
So good to hear from you, and so good to know April’s post spoke to you. Your emotions are completely normal – in a special needs parent kind of way – so don’t feel guilty. Hang in there!
Jolene
Hi Sarah,
So good to hear from you, and so good to know April’s post spoke to you. Your emotions are completely normal – in a special needs parent kind of way – so don’t feel guilty. Hang in there!
Jolene
Jolene
On this day of all days I am so very happy to have found this post from you. I am completely going through the motions and your worries are identical to mine. My first child is almost 5 mos old and just diagnosed with noonans. She has a feeding tube and the two typical noonans heart defects. Today I’m not so easily putting on the happy face. Today I’m worried and nervous and overwhelmed, but above all Guilty. Guilty that I feel so emotional when there are plenty worse things she can be diagnosed with. ~sarah~
Jolene
On this day of all days I am so very happy to have found this post from you. I am completely going through the motions and your worries are identical to mine. My first child is almost 5 mos old and just diagnosed with noonans. She has a feeding tube and the two typical noonans heart defects. Today I’m not so easily putting on the happy face. Today I’m worried and nervous and overwhelmed, but above all Guilty. Guilty that I feel so emotional when there are plenty worse things she can be diagnosed with. ~sarah~
You’re right, Jennifer. It’s not so much a particular diagnosis, but similar experiences that bind parents of kids with a variety of special needs together. We are much more alike than different!
Jolene
You’re right, Jennifer. It’s not so much a particular diagnosis, but similar experiences that bind parents of kids with a variety of special needs together. We are much more alike than different!
Jolene
I can totally relate to this! My son has Costello Syndrome, so I have a lot of the same feelings.
I can totally relate to this! My son has Costello Syndrome, so I have a lot of the same feelings.
Hi Terrie,
It is so important to remember we know our kids best and to advocate for them. Good for you for asking those questions and pursuing a diagnosis. Sometimes what seems like an obsession to others is really the truth. As parents, we have to learn to identify what’s our personal obsession to be tamed and what’s an issue to pursue as advocates. Not always easy!
Jolene
Hi Terrie,
It is so important to remember we know our kids best and to advocate for them. Good for you for asking those questions and pursuing a diagnosis. Sometimes what seems like an obsession to others is really the truth. As parents, we have to learn to identify what’s our personal obsession to be tamed and what’s an issue to pursue as advocates. Not always easy!
Jolene
I used to obsess like this all the time. Everyone tryed to tell me that there was nothing wrong with my child and it got to where I was afraid to say anything about him, so in my mind I was always asking questions. Then one day I just got tired of it and said hey, I know my child better than you. There is something going on here. Today he is eleven about to turn twelve and diagnosed with Autism. He also has a mild syndrome and has had several surgeries. I am pretty good at brushing people off now.
I used to obsess like this all the time. Everyone tryed to tell me that there was nothing wrong with my child and it got to where I was afraid to say anything about him, so in my mind I was always asking questions. Then one day I just got tired of it and said hey, I know my child better than you. There is something going on here. Today he is eleven about to turn twelve and diagnosed with Autism. He also has a mild syndrome and has had several surgeries. I am pretty good at brushing people off now.
Today, my obsessive thought is “when is the doctor going to call me back?” And how many times is calling his nurse and asking her considered obnoxious?
That’s today.
Today, my obsessive thought is “when is the doctor going to call me back?” And how many times is calling his nurse and asking her considered obnoxious?
That’s today.