I saw this piece this morning, and just had to do an excerpt on it. I think a lot of special needs Moms, Dads, and Caregivers can relate.
Those special sounds that we can relate to for Aria:
“He’ll (she’ll) grow out of it.” Really? Because not even the experts can guarantee that, and you’re obviously qualified to make that judgement.
“I know exactly how you feel. My dog had seizures.” I’ve only heard this one a couple times. Yes, I feel for you, having anyone, or animal, with a seizure disorder is hard. Try empathy instead of sympathy, because our situations are not the same.
“If you have insurance, why do you need a fundraiser?” Insurance may cover her doctor & hospital related expenses, but it does not cover her medication, it does not cover the time my husband takes from work in order to be with his hospitalized daughter, it does not cover my meals while I spend weeks at the hospital with her, nor does it cover the hardships of barely making it pay-check to pay-check, and no, it does not cover the cost of a service dog.
And let me add in a couple of my own:
“Why don’t you apply for help from the government?” We have actually, and despite how difficult it has been to keep our finances afloat and food on the table since her diagnosis and me leaving work, we make just enough money to disqualify from any help. And no, we’re not living outside our means.
“Why don’t you just go back to work and put her in daycare?” I really wish it was just that easy, and I really don’t have the patience to explain to you why it’s not.
“Did you know when you were pregnant that something was wrong with him (her)?” I find this to be an awfully silly question. No, how could I possibly know how her brain cells were developing or what was going to happen six weeks after we brought her home.
“Did you take any medications while you were pregnant?” This one I usually only hear from people that don’t actually know us, and more so they’re asking me if I consumed alcohol. I appreciate your curiousity, but that’s rather offensive. No, I did not do anything “wrong” during my pregnancy.
“That drug isn’t legal in this state.” A special sound that we’ve recently triumphed over, but the war isn’t over. Patients like Aria still need better access to medical marijuana.
“We can always go back in and take out more of his (her) brain.” I’ve only heard this one once or twice, shortly after the second surgery. Yes, please, let’s further compromise her quality of life and development before trying other alternative therapies that could prevent further surgeries.
“He (she) looks so normal.” I am grateful that she is not noticeably physically affected by her seizures, but please don’t negate her disorder because she looks “normal.”
“Does that really work…Do you think it’s helping?” This is mostly in regards to her diet. I can’t really answer it, and I always feel like I have something to prove to the person who asks me this, and I shouldn’t feel that way. We chose the restricted diet in order to eliminate all possible triggers so that we may get a better hold on seizure control; and yes it has worked in conjunction with whole plant CBD so far.
“Even if we do find a mutation, there’s a good chance we won’t know what it means.” Change that second part to “it won’t change what you’re doing for her already,” and that’s the answer I’ve gotten from her current epileptologist in regards to genetic testing. So what? Does it not help to at least know? To have the information so that maybe one day in the future we will know what it means, or will be able to tailor her therapy to better treat her disorder with that knowledge, even it’s not immediate? I don’t see the harm in just knowing.
“I don’t know how you do it.” I find more solace than strife in this one, because yes, you literally do not know, so thank you for acknowledging that and giving me, and/or my husband, some credit for our daily struggles.
“The attending will stop by and then we will try to discharge you sometime today or tomorrow.” I am grateful I have not heard this one since December. If we can leave today, then why can’t we be discharged today, why do we have to stay here for another 24 hours?!
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Until next time