This story is from quite a few years ago, shortly after I was diagnosed. We had spent our month back East with my family and begrudgingly had returned to the life and chaos that hits every September, with the kids going back to school. It was about 7:30 in the morning and the three kids were sitting at the kitchen counter waiting for breakfast and reciting spelling words when prompted by me. Having been back in school for a little under 5 weeks, we were finally managing to get back into the rhythm of school mornings; reluctantly setting aside the lazy un-rushed moments of summer to be replaced with the routines required to get up and out on time. As I turned to remove the banana-chocolate chip muffins from the oven, I was talking to Max,
“I promise today after I am done at the hospital, I will go to the grocery store and get eggs.”
I might sound like a regular ole “Betty Crocker” mentioning fresh baked muffins on a school morning, but this was the real reason for my making muffins that morning. Max woke up, wanting one of his beloved “yokies” which is what he calls a sunny-side-up egg with toast. I had been to the doctors the day before, thanks to a flair-up” and then promptly visited the infusion center for the ever helpful steroids. Although I had EVERY intention of going to get the much needed groceries, I had run out of time and we were lacking MANY of the staples that help life run smoothly when trying to fill little bellies before heading off to school. Whether it was the egg, or the fact that mom had let him down that was so important, I’m not sure, but my announcement that we were out of eggs led to a forty minute melt down, which only subsided when presented with the distraction of baking muffins with mom (like I had the time or energy for that little trick!) It was a good thing that I had received the first dose of steroids the day before. I had been up all night, which meant I didn’t have to concern myself with such trivial things such as, waking up, or even getting dressed (after all, I was still wearing the same clothes from the day before.) This allowed for such a luxury on a school day.
The muffins tumbled out of the baking pan onto the cooling rack just as Max asked,
“Mom, when you go to the grocery store today, will you see if they have feet?”
Although I have always considered myself a pretty “hip” mom, in-tune with the likes an dislikes of my kids, this request had me stumped. I thought perhaps someone in his class had talked about having pigs feet, but wasn’t too sure.
“Feet? I think I need a little more information, do you mean pigs feet?”
“No mom, human feet.”
“Your birthday is next week, and that’s what I want to give you as a present, new feet that don’t have MS.”
How do you respond to this? How do you explain tears of absolute and complete love to a seven year old? I turned to the sink to hide those tears and in a strained voice said,
“What a great gift, I’ll ask the butcher.”
I remember thinking that would be the end of it. I don’t know if I’ll ever learn that I will forever be amazed and amused by my kids. Max ran out of his class as the bell rang and ran up to me, nearly knocking me over. This in itself was not difficult at that moment, as the flair-up had left me extremely unsteady and back then, I had yet to break down and start using the cane. It would not have take much to knock me on my ass.
“Mom, mom, did you go to the grocery store?”
“I sure did, bug! And you can have “yokies” for dinner if you want.”
“No, but mom, did you ask the butcher if he had any feet?”
I leaned over and said “I did, but he was all out.”
At just this moment, Sam walked up and chimed in,
“Did you check with the butcher?” (Haha Mr. Wise Guy!)
It took me quite a while to explain to Max that “human feet” just weren’t something that we were going to find. He was pretty damn persistent, suggesting we do an on-line search (after all “daddy found EVERYTHING on the internet”) and even wondered aloud if there might be someone that would be willing to “donate” feet. Sam’s response to that idea,
“Yeah, duh, that would mean that they wouldn’t have ANY feet, not even ones that hurt and don’t work like mommas.”
They got it, in their own ways, in their “little kid brains” they understood what so many grown-ups couldn’t seem to wrap their heads around. Just because I looked good (normal) didn’t mean there wasn’t something wrong. Even though I worked really hard to NOT let the kids see me struggling to climb down the stairs, or wince when trying to climb in our out of the car, they knew, because they asked. It is that magical, wonderful world of childhood, where it IS ok to ask (why do you walk funny, why do you have a cane, why do you need a wheelchair.) Somewhere along the line we loose that lack of fear, that freedom to ask about differences without thinking that different is bad. Even at such young ages, my kids knew about what I was going through because they weren’t afraid to ask, and I wasn’t afraid to answer.
I remember curling up in bed after tucking each of them in, hoping desperately that sleep would find it’s way into my steroid infused body, and feeling overwhelmed with so much love and joy for my kids that seemed to be growing and learning from this disease and becoming better people because of it’s introduction into all of our lives. That and developing a sarcastic wit too!
The latest and greatest on my Tecfidera experience. Still going well, no side-effects and still feeling that there might be some improvement to the ever present symptoms. As I have said before, this may well just be the “power of suggestion” but ya know what, I don’t really give a shit why it’s better. Just that it is. Those that live with something chronic, that is there day in and day out, morning afternoon and night, might be able to understand this. Sure, I would love to have definitive answers. Is it helping slow the progression of the disease? Is it what is causing the symptoms to feel a little less severe? Considering I had NO progression for three years and was NOT on any disease modifying drug (DMD) I can’t say that if I don’t have progression for the NEXT three that I will be inclined to credit Biogen – or the wonder drug Tecfidera. BUT I am also NOT going to dismiss it as a possibility. I will only celebrate that it would then mean NO progression in 6 years, which sounds good to me!
I have spent sometime reading other MS blogs, people with varying different symptoms, experiences and views. I know that there are people that swear by a new diet regime and credit that to their improvement. There are people that refuse to take any of the disease modifying drugs, some because they are fearful of the long term effects of putting man-made drugs in there body year after year, and some because they are so anti big pharmaceutical company that they would never want to play a role in what they see as the continued profits to the few rich and elite. Is one camp or view right and another wrong? I have absolutely NO idea, but more importantly is it’s NOT my business to try and answer that question, to judge. Each and every person that suffers from MS deserves to deal with it in a way that works for them, their life and their beliefs. I was shocked and really bummed to catch a bit of a fight on Twitter the other day, two different views arguing, judging and saying mean and hurtful things I had no part in this exchange, and wouldn’t want to have been involved, but I did want to just tell each and every person involved in that exchange to shut the fuck up! It’s bad enough that people are living with MS and all the crap that comes with it. It sucks that there are folks out there that judge as a result (think you are drunk because you slur your words, giggle because you teeter and totter when you walk, or think you are no longer someone cool because you don’t have the same energy as everyone else, and can’t do all the social things you once did.) But to witness people that HAVE MS, that know what it’s like to just NEVER know what tomorrow is going to bring, passing judgement on each other just sucks. Grow up and mind your own business. Be happy and kind, that is what matters NOT what I am doing to try and help ME.