(Fair warning: this post ran longer than I had planned. But these are things I needed to say.)
When you aren’t the healthiest person in the world, there are many “downsides”. But there are also a few “upsides”.
For me personally, one of the hardest things about not (physically) being my old self, is loosing certain aspects of independence. I hate relying on others. I loathe it. I’d like to be the one doing things for other people. I used to be that person. Now I’m often the one needing help with things.
I won’t lie, or try to sugar-coat it – it mostly sucks. BUT one of the benefits of being in this situation is that I learn who actually cares about me. I learn what friends and family members are actually there for me, and which ones just said the words for years, when there was no action needed behind the words.
Anyone can be around when it’s convenient for them, or when you can do things for them. True friends are those who are there for you, even when circumstances change.
Often who that turns out to be, and not to be, is surprising. Some people I thought were so close to me, people I had personally been there for when they needed something – totally bailed on me when I needed them. Does it hurt? Of course. But you learn to move on. Better to realize now, than continuing to be close to someone that never really cared that much about you in the first place. That’s why I call it a benefit.
Those people aren’t in my life at all now, and while it may have been painful at the time, I now think it’s for the best. Who wants a fake friend anyway? I want people in my life that care about me, as I care about them.
Those of us with chronic illness may not have a ton of people close to us, but the ones we do have – are the ones that really matter.
What does this have to do with Father’s Day? Well, that’s pretty simple. The two men in my life that are always there for me – are my father and my husband.
I remember when I was first officially diagnosed with MG. I knew that whatever I was about to embark on wasn’t going to be good, when my neurologist asked, “Do you have a good support system?”
I was like, “What?”
I’ve been through many medical things, but I’ve never had a doctor ask me that. Or ever seem to care about such a thing – so kudos to him for caring.
He wanted to know about what people I had around me. Who did I have that I could lean on, count on? Did I have a good support system? I said, “Yeah. I’ve got my husband, and my Mom & my Dad.” He said, “Do your parents live far away?” I said, “No, they live next door.” He said, “Good. Good. You will need them.”
Was he ever right about that! I have needed my family more in the past 3 years than I ever have in my adult life. Thank God they are good people, and their love for me is real.
Since this post is about Father’s Day, I’m going to talk mostly about my Dad and my husband. But just to make one thing clear – I have a great mom! She is kind, loving, fair, and a wonderful grandmother. My Mom is so soft-hearted.
If there were a dictionary with the words “hard-working responsible Dad” in it, my father’s picture would be beside of it. He worked so hard when I was growing up that I often didn’t get to spend a lot of time with him. He drove a tractor-trailer, so he was often gone or asleep when I was awake because his work schedule was often the opposite of my school schedule. Now that he’s retired, he still works every bit as hard (just on different things). He’s always doing something for someone. He takes care of the yard work for his own property and several others who aren’t able to do it themselves, not to mention two church grounds. But now he manages to squeeze in a little more time for hunting and fishing. He’s always doing something.
Now that he’s retired, I get to see him more and that’s great! It’s funny to say that you see your Dad more at 34 years old than you did at as a kid, but it’s the truth!
This is one of my favorite photographs of my Dad and I. We are FAR from looking our best here. LOL! But it means so much to me, because it symbolizes how my Daddy has always been there for me. You see, we always gathered at my Grandma’s house for Christmas, the whole family. And sometimes my Dad or one of my uncles would miss Christmas, due to the shift work schedules they had. This particular year, Dad told me he wouldn’t be able to make it. And I was so sad. I remember asking him to please come anyway.When my Dad made it home after working all night and morning, instead of going to bed, he came to Gram’s too and spent the day sitting sleepily beside me. And I was so happy he made it! That is why I love this picture.
My Dad takes care of so much for so many people. There are a lot of people that have, and still do, count on my Dad. And I think some of them didn’t even realize how much. But I do. He’s the best Dad I could have ever asked for.
I kind of feel like my parents got the shaft. My brother is in Heaven, and all they’ve got is me. So I think it’s kind of unfair to them, that they have to worry about me. But I guess nobody said life was fair, it just is what it is. I’d like to think that I bring something good to their lives, even if it isn’t as much as I’d like to be able to do. And of course, I did give them 3 darling grandchildren – and really – how could I be considered useless after that??? Because those kids are AWESOME! ;)
Then there’s my husband. I doubt that when my husband married a woman 10 and half years younger than him, he thought he’d be the one taking care of me. But that’s what people that love each other do. They take care of each other. I think I take care of him too, in my own way.
We’ve been through so many crazy things in our 10+ years together. But we still laugh more than any couple I have ever known. One might think in a household with my illness and with our youngest daughter’s autism, that we might be some seriously stressed out, unhappy people. But we’re not. Sure, we have our moments – we are HUMAN after all. But we have faith in God and hope. And we are some seriously goofy people that know how to cut up and have a good time. We laugh every day, many times a day.
When I had so many physical issues after Ella’s birth that doctors couldn’t figure out, my husband had to step up and do many of the “mothering” activities that I could not. I was dealing with spinal damage from a botched spinal block for my c-section, involving total loss of feeling and reflexes in my right leg. And I was having a dramatic increase in bizarre neuromuscular symptoms – that we later found out was MG. But we spent about a year with them telling us I probably had a brain tumor or maybe MS, and doctors trying to get my coverage to approve an MRI. Fun Times, Fun times. (NOT!)
My husband & Ella. Jan. 22nd, 2011. This is probably my favorite “father” photo of my husband. With our 1st two, I had pretty much all of the baby duties, as he was busy going to nursing school, doing his clinical rotations, and working. But things were different with Ella. And my little baby, who was very attached to me (and still is) had to learn that she could count on Daddy for stuff she needed too, not just Mommy. At first she didn’t even want to take a bottle from him. She would actually scowl, as if to say, “Mommy is supposed to be feeding me every time!” But she adjusted, and became quite the Daddy’s girl. I took this photo of them one day when they crashed out asleep on the bed together. I think it’s adorable.
I managed pretty well until my fast growing (tall for her age) Ella got too heavy for me to lift. And that was when my husband really had to take over some of the things I normally did. Ella has gotten a different type of parenting. I jokingly call it “brute force” parenting. I swear he handled my delicate little baby like a sack of rice. I did not approve. It wasn’t that he did anything “wrong”. He just did nothing like I would have done it. And it drove me crazy. To be totally honest, it still does. LOL!!!!
A typical example would’ve been:
(during a diaper change)
Me: ”Do you have to wipe her that hard?”
Him: ”Do you want to do it?”
Me: ”Of course I want to do it, because you’re doing it wrong! But I can’t. So can you please just take your time and wipe her more gently and maybe try not to use 100 diaper wipes per poopy diaper?”
Him: ”When you can do it, then you can do it the way you want. Until then, I’m doing it this way.”
Me: ”Ugh!”
In the end, we’ve learned to balance things. Does it still drive me nuts to not be able to do the stuff I want to do? Of course. But we’ve learned to function in a different way. I still do a great deal around here. But not the same things I used to do, and definitely not in the same ways. Everything has been modified, adjusted, and duties have been spread out. Like I tell my kids, we are a team. There are no “chores” here. We are simply a team, and we all work together doing what we can do, to make things work better for all of us.
Once, Emma (my 8 year old) asked me, “Are Grandma and PawPaw a part of our team too?” I replied, “Of course they are.” We might not live with them, but they are absolutely a part of our team.
So thank you to the people on my team: My family and friends that haven’t forgotten me, and most of all, my kids, my mom, and today especially – the father’s in my life – my Dad and my husband.
I love you so very much and I am so blessed to be able to share my life with you.
Love Always,
Deb
Beautiful!