The Winds are Changing

Good luck has come my way. I hate to jinx things, but I wonder how long it will last. For now, I need to just enjoy it.

I got the job! I will officially be working from home starting July 12th. I don't have words to describe how ecstatic I am! It's been so hard the last year. I've felt like such a failure being unable to help provide financially for my family.

The part that gives me pause and makes me worry about my luck changing again is that it is a temporary position until September or so. The silver lining is that if my ratings are good, I could be offered year-round work, or at the very least could start up again in January when their season picks up again. If nothing else, it will provide me with more recent work experience that could help me in the job hunt.

This couldn't have come at a better time. I've been slipping into a darker place recently (one reason I haven't blogged in awhile!) and really needed things to change. Now I just have to pray that things continue to improve!

I'm most happy that we can be a bit financially secure right now, and am hoping I keep the job so that continues. I feel horrible that we can't provide the things that I would like to provide for our children.

Speaking of the children, Kierra said something to my husband the other day that totally made me stop and marvel at her. My husband and the kids were waiting in the car for me. Kierra tells him that she wants to be a doctor when she grows up. She has said this a lot in the past. So he asked her why. In the past she's said because she wants to "feel people better." Sounds goofy, but the sentiment is beautiful. This time she says, "So I can fix Mommy so that she can run with me." I'm tearing up just typing that out even! She's always had something special to her. Not to push my other kids to the side since I know they have their own special gifts as well; but she's always had this wise-beyond-her-years understanding of people and genuine empathy. I've always felt that she was a healer, like me. Of course I won't push her to do that with her life if she doesn't choose it, but I will support what she wants to do. And I really would not be surprised if she wants to become a doctor.

This whole discussion reminds me of something I considered doing with her. This has pushed me further to the side of wanting to do it. I found Reiki healing classes for kids, but she has to be a bit older yet. I'm sure many will think I'm crazy for believing in that "made-up stuff," but I have seen energy healing firsthand and have been told that I am an energy healer if I ever would open myself up to it. I want classes for myself as well; but I do think Kierra has some amazing gifts as well.

Facing the Fears

I'm sure many of us know of or have heard of someone who is disabled and rarely leaves the home. Some may wonder how that happens. After all, most places are handicapped accessible now, right?

It's not that easy though. I know all too well how easy it is to be trapped up in the fears and anxieties. I fight hard to not let myself be controlled by it though.

Yes, many places are handicapped accessible. Yet that doesn't mean that it still might not require an extraordinary amount of effort. It also requires facing the public, which is something I still struggle with to some degree whenever I go out. It can be little things...someone glancing at me a bit longer with an odd expression on their faces or sighing in exasperation when I'm not walking fast enough. Or sometimes it's even big things like someone confronting me about parking in handicapped, because a young mother of three couldn't possibly be handicapped. It's hard to face this daily. Sure, you can say, "Don't care what people think or say!" but it's hard to ignore when you're faced with it daily. I'm open about my disability. If you ask me politely, I will tell. But I don't like being looked at like a freak show, or even with a look of pity. Don't pity me. I just want respect and to be viewed as another human being.

The psychological aspects of being "on show" when in public can be daunting enough for many people and that's what mainly keeps them home as much as possible. The logistics of physically going out can sometimes make the task insurmountable at times. Going out in a snowstorm alone and trying to walk on unshoveled sidewalks? Forget it! There's no possible way I can do it. So unless I have someone with me I can't go to any location that doesn't have clear walkways.

Then there's also the assumption that anyone disabled is wheelchair-bound. Don't get me wrong, I am very thankful for all of the aids that we have available and don't believe that I'm somehow more important than someone in a wheelchair. But it would be nice if all modifications were not only made with a wheelchair in mind. I need ramps to get up curbs. Steeper ramps are very difficult for me, whereas they may be alright for someone in a wheelchair. So even the term "handicapped accessible" might not mean that it's overly accessible to me.

So, yes, going out in public can be scary. When I'm not out as much, I do see those social anxieties creep up and it bothers me so much. My disability has taken so much from me, but I'm not letting it take the freedoms I do have left from me.

The first snowfall of the winter we were leaving and Michael was helping me out the door. I'm not proud to say I sort of snapped at him. I felt he was babying me, and I bristled at it. I realized instantly that he was just trying to help and I was being unnecessarily mean, so I quickly apologized and explained that I needed to do it myself. I needed to remind myself that I could walk somewhat on snow and needed to do what I could do. If I let him help me all the time, I would become paralyzed emotionally and not be willing to do it on my own anymore. I think he understood and all was well. Yet I think of that day often as a great example of what it's like for us sometimes.

Besides me fighting the fears and trying my hardest to not allow myself to become housebound, I've found having children has helped me greatly with this. Like many other things, it makes me do things sometimes that I would probably not do for myself. I would do anything within my power for them, even if it means braving a world that may not be overly accessible, or overly accepting. My hope is they receive gifts as great as that from me as they have given me.

The impact of disability on the children

I wonder about this a lot. Will my children grow to resent my disability? I'm sure the day will come when they will wonder why they had to have the mom with a disability. Most kids go through that stage of wondering why they have the parents that they do. My kids have my disability added to the mix. Will they hate me for having them when I'm not the "normal" parent? What's normal anyways???

My oldest daughter, Kierra, is turning four next month. The other day my husband, Michael, brought up an interesting observation. He noticed that she tends to prefer the "broken" or "not whole" toys and things. For instance, she has a Rescue Hero figurine that just won't stay standing up. It has become one of her favorites and she will use the other figurines to prop it up. It made both of us wonder if this is because of me. Then I think further and wonder if my disability will increase her empathy, or if she will just eventually resent all of the things that she can't do because her mom can't do them.

I'm reminded of last summer when we decided to take our girls to a local fair. We parked the car and started walking. I had Ali (Alessandra, our now 2.5 year old daughter) in a stroller so that I had something to push and lean on. I struggled to get as far as we had gotten, and was quickly reaching the end of my rope. We were most of the way to the park when I looked up and saw we would have to go uphill even further once inside. I just couldn't do it. Yet there was no way that I was going to ruin the fun for my daughters that were looking forward to a pony ride. So I told Michael to go ahead and take them in and I would go wait in the car. I pushed the empty stroller back to the car, fighting back tears the whole way. Once I got inside, I let myself cry. Cry in anger - that I had to miss out on seeing my daughters have fun. Cry in frustration - that I couldn't do a thing about it. Cry in guilt - that my husband had to take over the task and do it alone. And cry in loneliness - that I had to sit alone and couldn't be in on the fun. I thought a lot in that time until they came back. I wondered what the future held and whether or not my children would ever understand the love I had for them - how I risked my health to have them. Or if they would just view it as selfishness on my part and wish they didn't have to deal with my disability.

Such dark thoughts....

Then I see Kierra and Ali playing with my leg braces (AFOs) like they are the coolest things ever. Kierra asks about when I was little, and is fascinated about when I tell her that I used to be able to run and jump and play just like her. I can tell this scares her even though she can't put it into words. If it happened to me, couldn't it happen to her? Truth is, it could. No one knows. Yet I can't live every day, afraid that I'll be worse the next day or that one of my daughters will become sick or disabled. I have to enjoy the now...and remind myself to take things one step at a time. My husband and I do everything we possibly can for our children. All we can do is hope it's enough.