Saturday, June 5, 2010

Mary,Jesus & Joseph! Mamma had an epiphany, and its about time!

I HATE being disabled. I cannot express enough how much I HATE having any limitations. I'll try to put it into words if I possibly can. Remember that scene from "Stand by Me" where all the boys realize they are all covered in leeches. You know how everytime you watch that episode, you think about how awful it would be if you were covered in leeches, and how you'd have this overwhelming feeling to jump up and slap at them for hours until they were all gone, screaming the whoooooooole time. Well, having RA is a bit like waking up every day and remembering that I have a ton of leeches on me. It is that horrifying. Really. I promise. I wouldn't lie. Not about RA.

And I also hate RA because it hinders me in SO many ways. Remember, before RA, I not only felt human, I felt that I was super-human. (How the mighty has fallen, huh?) If someone gave me a list of tasks that would require the energy of four people, I would not only have 'em done in a day, but I would have added five more and had my hair done, and my outfits changed twice to boot.

Now I have days when I imagine nothing will ever get done at my hands again... but then! I have days when I'm determmined that I will be AS efficient as the old me and will get everything done and look good doing it. (Of course, on these days I either fail miserably, or I hurt so much by the end of the day that I fall into bed as gracefully as Dorothy's Tin Man, screaming for celebrex all the way down.) In actuality, the truth is this: most days I have a list of about 10 things I want to do, and I get maybe 1/2 of those done, so I'm maybe just a little bit slower than the average bear, I guess.

I am coming to terms with the new rythm of my life. And though this may sound odd, I also recognize that I still do posess a certain physical beauty that RA has not stolen completely as I had previously believed. I suddenly feel too that this is another part of my life that should no longer be wasted as I mourn what else IS no longer because of this disease. Beauty fades rapidly, and I would lie if I said that hearing some recent compliments did not create a desire within me of late to luxuriate in this beauty, to accept the complimnets and the stares, and to appreciate the bit of the magician's illusion it lends me...

"Look here at how the blonde curls frame her big lovely eyes; pay no attention to the way she sometimes limps or that her hands appear for too rigid for someone's her age."

This blog is called "Confessions..." because that is what I do here. I confess. And I am confessing that yes I use my looks to open doors for me, espeically those doors that might otherwise be closed for someone with RA. I do my work as an activist at those doors AND behind them. Sometimes I have to get inside before I can truly begin changing pre-conceived ideas about people with autoimmune diseases. And I am ashamed to admit but sometimes the size of the key that unlocks that door is the approximate size and shape of two ass shakes and a head turn with a wink.

Yet, I write about this acceptance of my new limitations and the use of the weapons I have left, and in actuality, that is not what today's epiphany is about.

That epiphany would, in fact, involve my son.

You see, years ago, long before I was so evovled in my thinking about RA (ok you got me-- it was more like days ago), I felt very disabled and very frustrated, but the one clear thought that I always had from day one is this: I may be a thirty-something year old Mom with a physical disability and limitations and obstecales to every day living, BUT! My son is just a normal little boy, (emphasis on normal), and he does NOT have a disability, and hence, I will not allow him to live as if he does have one.

Now great intentions aside, and that was all I had... This decleration put me in a tricky spot b/c let's say I'm having a flare that is lasting a few weeks, but I also have a two year old who is relying on me for his every meal, every bathroom break, every minute of entertainment. In short, he needed me for every social, intellectual and fundamental need he had. (Let's not even mention here that I had no family support at that juncture -- or now, for that matter.)

So here's where things got/get tricky. With all of my greatest of intentions, I was, in fact, finding it hard enough just to prepare all my son's meals, so how was I then going to shuttle him around to enough activities so that he did not live "as if he were disabled?" I couldn't do it. So yes, in the very early days of his life, I am ashamed to say that his life became as small as mine often times did, which meant me all day long, my husband and me at nights, and if he was lucky, his cousins from time to time on the weekends.

It was making me crazy. After all my degrees relating to education and/or child psychology, I had all the love and knowledge to give my son, and yet to walk him outside and place him on the grass proved to be too difficult for me to manage on most days.

Oh, and around that same time it is worth noting, money was starting to become as big an obstacle to helping my child to live his life of busy activities as my health was.

What was I going to do???

So what I did do turned out to be one of the best decisions I have made in recent years. I took whatever money I could scrape together, and enrolled my then two year old son into one of those fancy preschools, that only meet for a few hours, a few days a week. Since the hours are only from like 9 -12, only stay-at-home-parents could find the time to take their children to these schools thus ensuring that the schools would be ever mindful of the heavy amount of parental involvement and therefore the curriculum would be full of both academic worhty subjects, but also plent of of oppurtunities for field trips and parties to provide both parent and child reasons to socialize.

I honestly liked the idea of my son having access to some structured learning time, but more than anything, I just wanted him to make other friends besides me, (read: some peers, some non-disabled children like himself.) In short, this was one of my son's first lessons in understanding that other people besides himself could, and in fact liked to, run/jump/bike, etc... He finally had people with whom he could play that didn't have to stop every hour to either take a medication or a nap.

So over the past few years, no matter what our financial situation, I have made sure that our son's school remains a top priority. Ok, so check one for Mama.

But as he ages, our son needs more than even that nine hours a week of feeling "not disabled" as I call it. So I have increasingly organized play dates, scheduled activiities for us, ensured that my hubby -- instead of helping me, his disabled wife or helping around with the house -- directed all his after work energy to taking our son to the park, or swimming, and then playing with him after dinner, bathing him and finally putting him to bed. (In total, I think my hubby and I talk about 20 minutes a day.)

I know to the the outside person it seems crazy. But imagine that at least five hours a day of a little boy's time is spent with a woman whom can only sit and play trains ten minutes at a time, or then stand to play ANYTHING for another 10 minutes, before its time to sit down again and rest. The lawyers refer to it as "popcorn disabled." We sit and stand and rest on a continuous basis all day b/c those activities I just listed remain comfortable for only a few minutes at a time. (How my child is not ADHD is a blessed miracle!)

So yes, GDamnit, I worry a lot that my son spends too much of his time modeling his life after the life of a disabled woman, even if that disabled woman happens to be his mother, and therefore the woman whom loves him more than she loves even herself.

Still, it has struck me recently that I have, perhaps, in my determination not to let my son live the sheltered life I've begun to live, pushed too much and too often. I say this beacuse recently, I did something that I hadn't allowed to happen in months and months. I left a weekend open, with no plans made for any of us, and I picked up a couple of movies for the family.

And you know what happened? The three of us spent the weeend kicking back, sometimes together having a blast in the pool or eating, or sometimes apart. Maybe I was quilting in one room while my son played trains in another room, and my hubby watched The History Channel in even a different room. And then Sunday, a miraculous thing occured. One of our son's friend's Mom's called and said, "How about sending your child over for a few hours, so you and your hubby can have a little time to yourself?"

And that is exactly what we did. And it was wonderful.

And I know it seems like just a normal weekend that many and most families might have all the time, but for me, it was a weekend full of revelations. First, I don't spend enough time focusing on my time alone with my husband. Secondly, I spend way too much time worrying that my son is modeling himself after a disabled woman, because for one thing, that is not true. And thirdly, even if it is true a ittle bit, its actually a somewhat good thing. Because hey - I have some good traits, some that deserve to serve as examples for others, disabled or no, right?

Finally, I just LOVED the normalcy of our weekend together. I wanted to see what it was going to be without my worry over his development clouding it. And I was happy to discover that it truly was one of the most wonderful weekends I've had in a very long time, with everyone feeling, for once, great in their own skin and o.k. that everyone else's bodies were at differet levels too.

No, this does not mean, however, I'm pulling him out of the pricey school. He still does need time away from Mom, but not because I'm disabled, just because he does.

And one more thing as an addendum to this story. Much is written these days about how to raise a child with speical needs. I get that, I do. But yet, not much is written in the reverse: for the mom with speical needs raising the child with very normal needs. And so that is why I think these posts are so important to we moms especially. We are the best sort of barometer for each other, I suppose.

Though, I will share recently that my rheumy was so impressed with my son's behavior at a recent visit, that she leaned over and asked my secret. Of course, it made me feel good. But how could I explain in the matter of minutes the bond that has arisen out of countless hours of the two of us finding the best points at which we could meet as mother and son, to play together, to laugh together, to learn and teach together, a rythym that involves pain and pills and laugther and questions and more laughter and love, lots of love, all the time love, and the desire to want to do the absolute best for my child, and perhpas even more so than an able-bodied person because I never want to feel for a second that any oppurtunity was missed for him because of me.

So I just looked at her and said, "We have a speical bond, Doc." At which point she could only answer,"I'm sure you do. There's do doubt about that."


  1. You have that bond because you spend time with your son. Kudos to you!
    You don't send your son to a different room and make him watch television all day so that he'll leave you alone. You like him and do things with him, and arrange extra opportunities for him, too. Great parenting!

  2. The one thing that no human being can do is control everything.

    Sure, you can try. You might even be successful in controlling ALMOST everything. But some things will fall through the cracks in spite of your amazing abilities and amazing determination, and then you'll worry and stress and develop ulcers because, dammit, you can't control it all.

    Your "free" weekend was a marvelous lesson in letting go. You allowed yourself, your husband and your son to simply "be" together. No one controlled anything. And it felt SO good.

    I hope you'll allow yourself to "lose control" more frequently in the future, SB. Your son will be just fine with his "disabled" mother because the one thing that she really CAN control in his life and in hers is her love for him. And that's all he really needs, right?

    Great post. Great lessons. Hang loose and relax a little, will ya?

    Hugs for you,

  3. Wow - this one was sure worth the wait!!

    At times, I too have thought "well, if I have to have RA, at least I can make it look good!" I am now the master of finding comfortable, chic shoes - my girlfriends are always jealous ;-)

    And I have to tell you, your worries about your son are the some of the same ones I had/have when I think about maybe being a mom. I think they're some of the same my husband had, too, when he wasn't so sure it was a great idea. We are both "control" people, so fear of the unknown is a big one for us. But, as I suspected and it seems you've found, things often do have a way of working themselves out. And isn't it amazing how small children often show us that?!

    I'm SO glad that you were able to have time away from the stressful, go-go-go life to relax and reflect. I hope you have many more weekends like this to come.

    All the best, always.
    ~Amber aka ValleyWriter aka RA (maybe) Mamma ('cause hey, a girl's gotta have her alter egos!)

  4. Loved this post. My two-year-old and I spend day after day alone together in a way just like you described - playing together for ten minutes, Mommy lying on the couch for a half hour, playing together for ten more minutes... I do take him to Gymboree, but man, it does seem impossible sometimes just to "walk him outside and place him on the grass"... And I do sometimes knock myself out trying to create "normal" experiences for him. Thanks for the reminder that there's value in the time we spend together, whether or not I can run around like other moms! He is growing up to be a sweet, compassionate kid, which is worth a lot.

  5. Revelations are great, aren't they? So glad you had a relaxing weekend. Food for the soul. Your son is so blessed to have a mom that cares so much about him and that will sit on the floor as long as she can to play. It's so hard to function as a mom that wants to give her children a full life while being so limited. My kids still have trouble accepting that I can't always do everything with them that we both want to do. It's hard. But it makes them appreciate the things we can do even more. And I don't see anything wrong with your little guy modeling himself after a very able minded woman that is passionate about many things--namely her family.

  6. Well said! I felt and did the same things with my daughter (now 23) and my sons (now 16 & 17). Keeping our children active and making sure they have friends is important but so is the one-on-one time with mom regardless of activity. I too, would often receive the 'well behaved' complement when out. Good thing they don't see my sons at home, lol. Every Saturday we use to have family & friend night where my kids would invite their friends over, we would watch movies and my husband would make nachos. It was great! One advantage was their friends became accustom to seeing a crippled up mom in a wheelchair and it now causes no reaction. Now that my boys are seniors in high school they want nothing to do with mom or dad unless, of course, they need money or a ride from dad :) Compassion and acceptance, of us and others, are just two of the virtues our children develop over time.

  7. I hate the idea that I have limitations too but I have learned to rejoice in other things. Like how smart I am or what a good mother I am. Sometimes, we need to put aside the things that make us feel weak and look at the things that make us feel strong. I understand the “tin man” analogy all too well. Most days, I’m begging for someone to oil me. What I do know, however, is that everyone of us has limitations – with or without chronic illness. Some of us have a disease that holds us back, others have fears or weaknesses and others struggle with their demons.

    I understand your limitations and your fears because as a fellow sufferer, I am dealing with the same ones. Sometimes, I have to remind myself to stop and smell the roses especially on the days where I feel like I have been punched repeatedly and pushed to the ground, and I am not ready to get up.

    You are a great mother and you have done everything that you can to prove so don’t be hard on yourself. And “normal” is overrated. Creating your own “normal” speaks wonders.

    “But yet, not much is written in the reverse: for the mom with special needs raising the child with very normal needs.” You do not realize how “special” you are especially to that little boy and you are doing a great job – don’t doubt yourself.

  8. Lana -

    You made me cry. God bless you wherever you are today and during whatever it is you're doing. You deserve all the blessings I can bring you.

    - RA SB

  9. Good for you for finding the zen in a lazy weekend. I am sure your husband and son had a blast spending time with you and just being a family. Keep focused on those postives in your life postive energy brings postive change a wise person once told me. So don't beat yourself up for not feeling like you do enough for your son and celebrate what you can do. Even if it is only ten minutes on the floor playing trucks for the nine billionth time. He loves every second he gets and know that you love him. Take care SB and hope to hear more from you soon.

  10. As the mother of an Asperger's/Bipolar Son & myself limited by Lupus/RA and a host of other issues, BRAVA for having realize that no matter what your limitations are, you can find and create bonding time with your family. It is not easy & most times will have moments of interuptions due to the disorders we suffer. The popcorn analogy describes it perfectly. You sound like myself. I can not sit or stand in the same position for more than 20 minutes any given time. It's difficult to get your head around the losses we suffer but we quickly recover emotionally or mentally with the little things we gain. Hugs to you and yours. Tazzy

  11. Hey I am so glad I found a fellow RAer who is fiesty and stroppy and will NOT EVER EVER EVER let this horrid disease eat your spirit.

    By the way, I hate it eating my body too- I kind of pretend it isnt there and then I go out in the big wide world and find nothing in life is set out for a slightly derranged mother of 3 who really should know at 34 how to behave with a bit more serenity... NAH!

    I tend to have a wail, a moan at God, a blub into the duvet and then think- "thats that then" and get on with it.... embrace the wheelchair.... hmmmm

    no, no good still dont like it one bit!

  12. Great post!

    If only we Rheumies could understand the nitty gritties of a RAERs life in such detail....

    I am sure many RAers would share a similar concern about their child.

    Great learning for me as far as understanding basic day-to-day problems faced by a RAer is concerned.

    All the best & hope U conquer Ur RA soo.

  13. In my post for today, I wrote about that struggle with The List and the impact it has on me. A friend of mine once opine that if I never finish The List, maybe the damn thing's too long. Food for thought and maybe some day I'll learn to be more flexible in my expectations of myself.

    I admire what you do for your kid and you're absolutely right - not much out there for parents with disabilities. I once found this site that might be helpful You're doing your best. That's all you can do.

  14. I was diagnosed with JRA at age six, after battling the disease for two years. There really is not a lot out there at all for people with chronically ill children. But things are looking up I think.

    Oh, also, I just nominated you for the One Lovely Blog award :)