For My Uncle Kreg

“At least I don’t have cancer.”

That’s what I always told people who asked how I could have such a great attitude about my medical problems. That was before my uncle was diagnosed with cancer. I had no idea how true those words would ring.

I always thought he would win. I always thought he would beat it. I never once thought “What if he doesn’t?” I think I was doing it to be strong. Strong for my aunt. Strong for my daughter. Strong for my uncle. Strong for myself. But now I wish I would have asked “What if the worst happens? What if he doesn’t make it?”

I would have gone to see him every day. I would have called him more. I would have sat and listened more. Instead of being afraid to talk to him, afraid to disturb him, I would have asked. I would have thanked him for everything. All the times he just sat and had coffee with me, or dinner. Thanked him for his guidance. For listening to me. For treating me like another adult family member; like my view and my opinion mattered. I would have told him just how much he mattered to me.

It’s not very often that I question the way God works, or why He allows things to happen. But this is one of those times. I still needed him here. I needed him to talk with me and have coffee with me. I needed his guidance and his outlook. My husband needed his guidance and his example. Who is going to mentor him now? Who is going to sneak candy to my kids in plain sight? He won’t be there to see Cruz grow up. He hasn’t really even gotten to notice all the cute things Cruz does now. You know, if it weren’t for uncle Kreg, Cruz probably wouldn’t even exist. Sure, my husband always wanted another baby, and every only child wants a baby brother or sister, but it was my uncle’s constant “So when is the other one coming?” That finally broke my grudge against pregnancy. But he never really got to know him.

And then I think about how selfish that is of me, because if I still need him that much, I can’t imagine what my aunt and my cousins must be going through. 25 years. They’ve been married for 25 years. They’re best friends. I can’t imagine what it must be like, after all that time, to look down the road without him. His oldest daughter’s baby is younger than Cruz. If I’m this torn over him not being able to see Cruz grow, I can’t imagine what she is going through. Or my middle cousin. 19 and going through college. He won’t be there when she graduates. He won’t be there to walk her down the aisle. Or watch her kids grow up. Or my youngest cousin. He’s only 16. He won’t even see him graduate high school. He claims he’s never having kids. Uncle Kreg won’t be there to change his mind like he changed mine.

But we know where he is now. There is no questioning it. He is in heaven. He is with Jesus. He has no more pain; he is healed. He has a joy that we cannot even fathom. And he will be waiting when we get there.

Uncle Kreg is still with us in some ways. Whenever the Oregon Ducks play. Whenever someone gives Promise, or Cruz, or his little granddaughter a cookie. Whenever we help someone, just because they need help. When I look at my kids, or my aunt, or my cousins, and remember how much he loved all of us.

During his fight with cancer, uncle Kreg told me about a book he wanted me to read. A book about one young man’s struggle with the same cancer. I am reading the book now, and I feel so sorry that I never really knew what it was like when he was here with us.

Many times, he told me that if he made it through, his dream was to spread awareness of this cancer. To speak in high schools and colleges and hand out this book that talks about the pain and loneliness of cancer in such detail. Such detail that it gave me nightmares.

You see, my uncle had testicular cancer. A cancer that none of us had ever heard of, yet it is the most common cancer among men ages 15-35. It is also the most curable cancer – if you catch it early. By the time my uncle was diagnosed – because he passed out and went into seizures one night – it had already spread to his lymph nodes, lungs, and brain.

It makes me angry to think that it is the most common cancer in young men, yet most people have never heard of it. Why isn’t there more awareness of this cancer that affects so many people? Awareness can save lives. It could have saved my uncle’s life.

So I intend to help carry out my uncle’s plan. I intend to spread awareness. If he, one of the least, maybe THE least deserving person that I know, had to die, I will help make sure that it was not in vain. That it does not go unnoticed.

Talk to your sons about testicular cancer. One awkward talk could save their lives.

http://testicularcancerawarenessfoundation.org
http://togetherwewillwin.net

Dedicated to my uncle Kreg, who read my blog posts from the very beginning.
2/14/65 -8/31/13
You are greatly missed.

Aunt Brenda and Uncle Kreg at my cousin's wedding, 2 months before he was diagnosed.

Aunt Brenda and Uncle Kreg at my cousin’s wedding, 2 months before he was diagnosed.

Uncle Kreg holding my son, Christmas 2012, almost 1 year after being diagnosed.

Uncle Kreg holding my son, Christmas 2012, almost 1 year after being diagnosed.

Us at Relay For Life 2012. Uncle Kreg is in front.

Us at Relay For Life 2012. Uncle Kreg is in front.

Testicular Cancer Awareness bracelets in orchid, the color of its awareness ribbon.

Testicular Cancer Awareness bracelets in orchid, the color of its awareness ribbon.

Advertisements

Sunrise

It’s 2:57 AM right now, and I’ve been wide awake since 11. I fell asleep in my spot on the couch, but woke up when my legs and hips started hurting. I tossed and turned for a few hours, but the pain wouldn’t let me sleep. So here we are. I’ve given in and taken some meds, and I’ve got my cup of coffee in hand.

This isn’t so abnormal. At least, not for me. In fact, for me it’s abnormal to sleep all night until 6 or 7 AM. A normal night for me would be to fall asleep around 9 or 10, toss and turn most of the might, and finally get up around 4 am for a cup of coffee and some pain relief.

There was a day when I thought getting up any time before 5 am was crazy. That wasn’t so long ago; only a year and a half or so. Now getting up at 4 is just normal to me.

 

But don’t feel bad for me. In a lot of ways, getting up before the sun is a blessing. Who else gets to watch the beautiful sunrise every day?

 

As a stay at home mom, I generally don’t have a lot of time to myself. Getting up so early allows me to have some time to myself that I wouldn’t have otherwise. I get uninterrupted time to read, talk to God, and work on my blog. For most people, that’s a decision between sleeping while the kids are sleeping or getting the laundry done. The pain won’t let me sleep, and I can’t get off the couch (also the pain), so I can spend some quality me time guilt free. See? It’s all in perspective.

Dirty window, pretty sunrise.

Dirty window, pretty sunrise.

Skinny Girl Tip of the Week: Exercise!

Skinny Girl Tip of the Week: Exercise!

This is probably the single most important tip I could give you. There are so many health benefits to exercise; it doesn’t stop at weight loss. Cardio helps you lose weight, and cardio combined with weight training really improves your metabolism, making easier to lose weight and keep it off. Exercise also boosts your immune system, is more effective at fighting depression than antidepressants, it helps pain relief, improves circulation, gives you a longer life span, and so many other benefits. I know, you’ve tried, and failed, at exercising to lose weight. This issue is close to my heart, beca…use I have a disability, making it very difficult, and sometimes impossible, to exercise. But you know what? I did it. And I got results. And if I can do it, just about anyone can. It’s difficult at first, more of a battle of the mind than anything, but YOU CAN DO IT. And if you are consistant and refuse to give up, you WILL SEE RESULTS. So make time and not excuses. Pick five or six days out of the week and just do it. Crank up the headphones, break out the stroller, and jog around the block. Stick your feet under the couch and do crunches. Hold on to your dresser and do squats. Grab a gallon of milk and do reps lifting it in the air. There are plenty of things you can do to fit exercise into your budget and schedule. JUST DO IT!

To my readers:

The above was a post I  made on a fitness Facebook page. I had to keep it short and sweet, and none of the members of that page have a disability. However, I do, as do many of you. So I would like to add to my post.

Back when my daughter was born, I could walk about as far as I wanted to. It required some extra effort, but I could do it. So I bought a treadmill and an Easy-Shaper (A fancy contraption that helps me to crunches and other ab-exercises). It was hard to do the treadmill, some days more than others, but it didn’t hurt, and I rocked it. I lost those 40 pounds after about 6 months of getting serious.

Fast forward to when my son was born a year ago, and everything hurts, all the time, and I can’t walk for 5 minutes. I had 25-30 pounds to lose, and I knew my treadmill wasn’t going to do me any good. I decided to try a stationary bike (I can’t ride a 2-wheeler for balance reasons), so a friend and I traded her bike for my treadmill. I couldn’t do the bike unless I was wearing my braces, but I could do it. Most days. So on the days I could do it, I did it as fast as I could for as long as I could. I aimed for 20 minutes twice a day, which became 10 minutes twice a day. For a while, I couldn’t do it at all. Then, last week, in an effort to lose that last bit of baby wieght, I set out to do 15 minutes, twice a day, for 11 days (until my son’s 1st birthday). I only lasted nine of those days, until I just couldn’t anymore, but I can tell it made a big difference. I’m still doing my ab exercises on my easy shaper, and eventually I’ll go back to taking it slow on the bike. All that to say… EVEN YOU CAN DO IT! You might have to modify some exercises for yourself, and there will probably be a lot of trial and error, but you can do it! If you have a doctor or therapist you see regularly, ask them to help you design a program that will work for you. And if you find some things you can’t do, DON’T GIVE UP! Keep searching, and run with the things you can do!

To my readers who do not have use of their legs, I have done some online research, and found some effective exercise ideas (even cardio!) that you can do from a wheelchair! Usually, links don’t work when I post them from my laptop, but here are the sites:

http://www.livestrong.com/article/108802-exercises-people-wheelchairs/

http://www.ehow.com/way_5518274_exercises-people-wheelchairs.html

http://www.ehow.com/video_8000390_abdominal-exercises-wheelchair.html

 

Fighting Apathy: Life Worth Living

Do you ever wish you could rewind time? Unsay something; undo something? As the popular saying goes, it’s not so much the things I’ve done, but the things I haven’t done, that I regret.

Like most kids probably, when I turned 18, I was going to conquer the world.I got married, had a baby, and everyone said I couldn’t conquer the world now. I was going to prove them wrong.

But I woke up a couple years ago and realized I hadn’t proved anybody wrong. I had tried, but it seemed like every time I thought I was making the right decision, I was making the wrong one.

I got too tied up in a paycheck, and forgot about the journey. Forgot about the music and the fun. Forgot to do the things that make life worth living.

I had been able to make my own decisions for almost 9 years, and what did I have to show for it? Just stuff. A couple cars, some furniture, a good credit score. But who did I help? Where was my impact? Where was the music?

So, I decided to start making an impact. To make up for lost time. I would practice music again, volunteer at church and shelters, spend more time with friends and family. But as much as I tried, between work and other responsibilities, by the time I got a chance to do anything, I was too fatigued and in too much pain. Day in and day out, I went to work, came home, and went to bed.

When I quit my job, I had every intention of changing my path. I would play music again, volunteer for things I could do, make a difference.

But recently I realized, I wasn’t really doing any of that.

I wasn’t playing the keyboard, because I was too afraid of getting off the couch. Really. I was afraid that if I got off the couch, the pain would start. Music is my passion, but I was letting the fear of pain make me too apathetic to go after it.

My church has always needed help in the childcare department. I didn’t want to help, because I was afraid of pain. Afraid of committing and then being in pain getting ready early in the morning, and being in pain doing activities with the kids. Afraid I’d get put in the nursery, or with toddlers that I would have to carry and chase. Afraid it would end up like work, where I would have to be calling in all the time. I didn’t do much of anything because of the pain. No, it was sillier than that. I didn’t do anything because of the fear of pain.

I wasn’t really helping anyone or doing anything because I was afraid of the pain that it might cause. I was letting apathy get the best of me. What kind of a life is that?

I started to get angry. Angry that I was just sitting around all the time so I wouldn’t be in pain. Angry that I was letting fear keep me on the couch. The thing is, that’s a ridiculous plan, because I was in pain anyway.

So why shouldn’t I walk across the room and sit in the chair in front of the keyboard? Maybe it’ll hurt more. Well, it probably won’t. And then at least I’ll be doing something. And if it does, chances are it will be short lived. And then at least I’ll have done something.

And then I had this epiphany about helping out at church: I could ask to only be scheduled with school-aged children, so I wouldn’t have to carry or chase anyone. Sitting in my wheelchair talking to kids and teaching them would not be any different physically than sitting in my wheelchair listening to a sermon. And I could ask to only be scheduled at second service, so I wouldn’t have to be up and around too early. Wow. I’m a genius.

So, I’ve been playing music and teaching kids at church, and life has been a lot less boring.

In my efforts to reach out and live life, something really cool happened this weekend.

A few months ago, my brother-in-law, Ian, was diagnosed with cancer. Interestingly, it’s the same form of cancer that my uncle has. On Thursday, we stopped at their house to drop off a couple things, and we noticed they really needed yard work done. I felt kind of bad for not thinking about it before. Of course they need yard work done! He’s going through chemo, and my sister has a job and a 10 month old baby to take care of!

Right that minute I texted one of my community group leaders from church. She got a hold of the rest of my small group, and the next day we were all at my sister’s with shovels, rakes and gardening gloves. I was touched that they were willing to take a Friday night and spend hours doing yard work to help my family. As far as I was concerned, I figured I’d be spending the evening sitting on my sister’s couch while they did all the work. But when we got there, I decided to grab a shovel and see how far I got.

I was pleasantly surprised that I was able to help, and even make a dent in the work. And instead of hurting, it actually felt good to use those muscles I forgot I had. Eventually my back gave in, and I had to stop. I was fully expecting to be in a lot of pain the next day, but I wasn’t. In fact, I woke up with less pain than I have in a long time. Good Karma? Or maybe there’s something to using those muscles…

My nephew Kolby is a little light-skinned version of my son :)

My nephew Kolby is a little light-skinned version of my son 🙂

I’m so glad I decided to put the apathy away. To take the risk of being in a little more pain once in a while in order to live life; to make a difference. I can’t wait for the next opportunity.

Update: Playing my keyboard has been great. The chair we had used to hurt my back after a few minutes. By chance, we got another chair at a yard sale (the one we had had wheels; bad for a walking baby), and that chair doesn’t hurt my back. So I can play until the kids wake up without having any pain.

Childcare is going well. Usually I have someone in there to help me help the kids with their crafts. It’s a little difficult when I don’t, getting around to all the kids to help them. But there was only one day that I really had a hard time and ended up in extra pain. The rest have gone well.

My community group was able to pull all the weeds and scattered saplings out of my sister’s front yard. We will be back on Friday to do the back yard. We learned that they do have a sprinkler system installed, so they’ll be able to water it easily. Also, one of the guys in my community group works for a landscaping company. He was able to get a great deal on setting grass seed for her yard in the fall, and a year of lawn care, where all she would have to do is mow, and set it up so that there is no cost to my sister. Now that’s what church, and family, should be like.

Live with purpose.

Please don't stop the music

❤ Please don’t stop the music ❤

Fili-busted.

Generally speaking, I do not follow politics. Besides a few issues that are important to our family, I just don’t keep up on them. I’m busy keeping up with Dora the Explorer, how I’m going to handle a baby from a wheelchair, and the drama of second grade. If I need to know something, I call my politically savvy cousin, Shekinah. I don’t know who my state governor or Senators are (Shekinah is probably having a heart attack now), and I usually don’t know what we’re voting on until I get the ballot in the mail. I vote, and I have a good understanding of our political system due to paying attention in class, but that’s as far as it goes.

But something came to my attention the other day. As most of us have heard, Wendy Davis of Texas, recently turned to filibustering as a way of stopping a law from passing.  Now, to be honest, when I first heard about Ms. Davis, I did not know what filibustering was. So I researched it and read about it. Even then, I wasn’t sure I had it right. From what I understood, filibustering is when you take the floor and just talk. For hours on end, without stopping, as a way to stall the political process, to stop a law from passing that you do not agree with. That couldn’t be right. Permitted, recognized stalling? In the government? That’s something akin to a 6 year old distracting his parents so his friend can sneak a frog in the back door. So I called Shekinah, and I had understood correctly. Filibustering is a grown up term for stalling.

*For the record, Shekinah believes that filibusters can be a useful tool when used correctly and when necessary, and I agree with her.

The issue at hand was abortion. For the record I do not agree with abortion, and therefore do not agree with Wendy Davis, but if we look past our disagreement, there is another issue at hand.

Ms. Davis’ filibuster was objected when another senator helped her with a back brace.

Filibustering has strict rules. The rules vary for each of the 13 states that allow filibusters, but they are similar. In the state of Texas, the rules are that the senator has to stay on topic, and is not allowed to eat, drink, use the restroom, or sit or lean on a desk or chair.

“During a filibuster, a senator is limited to topics relevant to the bill being discussed and cannot eat, drink or use the restroom during the speech. The rules also prohibit sitting or leaning on a desk or chair under any circumstances when the senator has the floor and is speaking on the bill or resolution.”

Read more at the Hays Free Press http://haysfreepress.com/2013/06/26/what-are-the-rules-of-a-filibuster/#ixzz2XWbecpJ6

There are multiple things that I find wrong with these rules. And it’s not just a matter of my personal opinion; I believe they are unconstitutional. Specifically the phrase “under any circumstances”.  To start with, they don’t comply with the ADA, Americans with Disabilities Act, which states:

“The Americans with Disabilities Act of 1990 (ADA) prohibits discrimination and ensures equal opportunity for persons with disabilities in employment, State and local government services, public accommodations, commercial facilities, and transportation. It also mandates the establishment of TDD/telephone relay services.”

http://www.ada.gov/2010_regs.htm

From reading these rules of filibustering, you cannot do it from a wheelchair. If you are not able to stand for hours on end, your attempt will be unsuccessful. As of now, I don’t know of any disabled senators, but that doesn’t mean there will never be one. And we can’t wait until there is one to change this rule. If a disabled senator wanted to exercise their right to filibuster, they would have to wait for the rules to be changed. That would most likely make it too late for the Senator to filibuster the issue at hand.

I believe those are reasonable guidelines for a perfectly able bodied person. But let’s set disability aside. What about a senator with a back problem? Or a knee problem? I’m sure there are a few senators with those. It is unfair and unconstitutional that they would not have the same opportunity. Add on someone with diabetes or hypoglycemia, who can’t go many hours without eating, and I bet we’ve covered 30 percent of the senate. Not to mention the possibility of someone who has bladder or bowel problems, that isn’t able to wait to use the restroom.

I’m not saying that those rules should be done away with completely. I can see why they are a necessary element of the filibuster. What I am saying is that they should be reasonably flexible. Just as any employer would be required to make reasonable accommodations in order for me to work, the senate should be required to make reasonable accommodations to allow a senator with a medical problem to filibuster. “Under any circumstances” should not be a part of those rules.

These rules should be changed to support equality. No person’s lack of physical ability should keep them from taking part in the political process. From being allowed to fight for their beliefs. In a country where we boast about our freedom and equality, “under any circumstances” should not be a phrase found in our government policies referring to physical ability.

These are the thirteen states that currently allow filibusters:

  • Alabama
  • Alaska
  • Arkansas
  • Connecticut
  • Florida
  • Hawaii
  • Idaho
  • Maine
  • Nebraska
  • South Carolina
  • Texas
  • Utah
  • Vermont

If you were a senator in one of these states, would you be physically able to filibuster under those rules?

As Shekinah would say: Quick! Call your senators!

Filibustering is a common practice at our house, too.

Filibustering is a common practice at our house, too.

“You know what you do?…You don’t feel bad about it.”

I met someone yesterday that I think may have changed my life with something she said, and she probably doesn’t even know it.

Yesterday my community group (like a bible study group) hosted a barbeque in the park. I almost didn’t go, but since we were doing it to reach out to the community and as an act of kindness, I decided to go. After we arrived, a family arrived that I hadn’t met before. They had seven(!) kids, and one of them was using a wheelchair.

I told her that I liked her chair, and that it looked a lot like mine. I wasn’t using my chair, even though I really needed to, because I haven’t figured out the art of baby chasing from a wheelchair (another post for another time).

The way she sat and her shorter stature made me wonder if she had Spina Bifida, so I asked her mom when she was off playing with the other kids. She does have Spina Bifida, which as I’ve mentioned, one of my best friends, Kate, has, so we got to talking.

One of her friends adopted a child that has CP, so she was asking some questions about it, because her friend is looking for information. It came up that one of the biggest challenges I face is cooking.

I can’t stand in the kitchen long enough to make a meal. I’ve tried bringing my wheelchair in to do it, but the counters and stove are right at eye-level from my chair. Also, it’s hard to get around in the tight quarters in a wheelchair. I’ve tried using a barstool, but that doesn’t work, because you have to move all around the kitchen to cook. What doesn’t help is that I don’t particularly like cooking, so it’s already not enjoyable.

I tend to force myself to try to cook to save money. Eating out is expensive, and my husband, who is a cook, doesn’t wasn’t to come home from work and cook some more. The money thing has never really bothered him, so he doesn’t mind eating out. But our family doesn’t have a lot of extra money, so I feel that I need to save wherever I can.

Also, he is from Mexico, where they don’t eat cereal or a sandwich as a meal, so while my daughter and I are fine with eating just that, he is not. And since in Mexico the women tend to spend a lot of their time cooking awesome food, I somehow feel like I’m not as good of a wife for not doing it.

I know this is ridiculous, especially since he has in no way ever made me feel that way, but like I’ve said, sometimes I’m pretty hard on myself.

Recently, I had an opportunity to save money and have some easy, home-made frozen meals on hand, but it meant I would have to cook 2 meals, and make enough food for about 40 people each meal.

I was reluctant to participate. I can barely cook dinner for my own family; why would I want to try doing it for 40 people? Twice? One of the girls offered to help me, but me cooking usually ends in tears, so I declined her help. Plus, I didn’t see much point in me sitting and directing her on what to do.

I liked the idea of saving money and having meals ready to heat. Being a health nut, I’d rather have home-cooked meals available than fast food anyway. My husband offered to help, so I decided to give it a shot. He did the shopping and came home, but within 10 minutes of cooking I was in tears. When I thought of how much I still needed to do, that brought on more tears. He was sweet and brought me some medicine and my wheelchair, and a coke and chocolate (that always calms me down). Somehow we finished it all, but I was in a lot of pain, and I will NOT be doing that again. Well, never say never; perhaps the trick is to not do it all in one day. It was a busy week, so it just worked out that way.

We were supposed to meet to deliver the meals and play some games that night. After cooking, I took a shower (another painful task) and got into my sweats. I really wasn’t feeling well, and I didn’t want to go. I changed my mind at the last minute, so we all went. I still was in a lot of pain, so we left early. While we were leaving, someone said “Thanks for toughing it out, I know it’s frustrating.”

That comment kind of got to me. ‘Frustrating’ is not the right word. I felt that ‘frustrating’ would imply that I simply did not want to do it because it is complicated. ‘Frustrating’ sounds like I simply chose not to be lazy. In cases like this, I wish pain was visible. I wish they could see it and know. Because I chose to dry my tears and have a smile on my face when we arrived.

I am in pain all the time. Sometimes severe, sometimes not, but all the time. But I generally keep it to myself. I don’t go around with a frown on my face, or complain about it all the time. That’s just my choice. The truth is that I have a lot to smile and be happy about, and I think those things are more important. But sometimes I think my smile makes my pain seem less real to those around me. Some tend to think I’m making excuses or being lazy, or that when my family helps me with something, they are babying me.

I have always done as much as I can for myself. I have always pushed myself to be as independent as I can be. But I do have limits, and I know what they are. I can’t do as much physically as other people. So what is frustrating is when other people question those limits. When they assume I am simply not trying.

Don’t get me wrong, I don’t mind when people ask if I can do something. I would much rather they ask than assume that I cannot. What bothers me is when I tell them I can’t, but they want me to do it anyway. When they imply that if I would just put in some effort, I could do it. Kate had a similar incident on the same weekend, and I doubt we are alone in this.

Okay, enough with my rant and tangent. The person didn’t mean it that way, cooking is just a sensitive subject for me.

So, back to the park. I was telling my new friend about how cooking is a difficulty for me, and she was totally understanding why; a reaction that I usually don’t get. You know what she said? She said “You know what you do? You eat out, and don’t feel bad about it.”

Wow. So simple, so silly, but in my world, so profound. I’ve never had anyone really understand before. Nobody ever just give me permission to spend the extra money on something that’s considered a luxury because, well, that’s what I need to do.

So from now on, I’m going to do what I need to do. I’m going to eat out when I the pain is too much to stand, and I’m not going to feel bad about it. I’m going to listen to my body, and not force it to stand. I’m going to use my chair when I need to, baby and all. The more I force myself now, the less I’ll be able to use my legs later. So I’m going to take care of myself, and not let other people be my guide. I’m going to do my best, and let God do the rest.

So thank you new friend, for giving me permission. Something that I didn’t know I needed, but it has kind of set me free.

Sometimes when daddy's at work, we have cereal for dinner. But we like it that way.

Sometimes when daddy’s at work, we have cereal for dinner. But we like it that way.

dis(abled)

Sometimes my disability frustrates me. Sometimes I am not as optimistic as I claim to be. Sometimes I wish it would disappear.

I don’t always feel this way. I don’t usually wish I didn’t have CP or count myself unlucky because of it. A lot of time I don’t give it much thought at all. And when I do I am able to see the benefits of it instead of the downfalls. But every once in a while, I just wish it would go away.

The past week has been a hard one. Hard to stand up, hard to sit down, hard to sleep. Hard to carry the baby, change his diaper, give him a bath. Hard to get the dishes done, or the laundry, sweep the floor. Just the thought of getting off the couch is overwhelming sometimes. Not because I’d rather sit and watch TV, but because I know it’s going to hurt more if I get up. And while most everyone would think “Okay, so just sit down and relax.” I can’t. I don’t know how. Sitting on the couch watching TV is a waste of time to me. I’d rather be living my life than just watching someone else live theirs.

I want to have an impact on the world, but sometimes I wonder how I am going to do that stuck on the couch. I don’t want to sit and relax, I want to hike mountains, run marathons, build a house with Habitat For Humanity. I’m tired of offering to help with something, and then ‘warning’ them of my physical limitations. I just want to do what I want to do, and not have to think about whether I have the ability to do it.

And for the times I really do want to just sit down because it hurts too much, usually I can’t. There’s a diaper to change or a baby to chase or dinner to make.

Sometimes it makes me bratty. Sunday, I was a brat all day and I knew it. But I couldn’t change it. I took my wheelchair into church, because we were supposed to help greet and hand out bulletins. We were late getting there (because of my pain), so they already had it covered. I was frustrated that we were late (again) and missed out on helping because of my disability.

In the service, the baby started fussing. I realized that we forgot to check him into the computer for childcare when we arrived, so my husband couldn’t just go drop him off at the nursery. The baby needed to be checked in first, but Sal didn’t know how to do it. I instantly got irritated with him for not knowing how to do it. This meant I had to do it. The reason I didn’t want to have to do it? Pain. I can’t hold a baby and wheel my chair. So I had to get up and carry him. Trying to stand up, I stumbled on the footrests of my chair, and almost fell. We were sitting near the front, so I felt like everyone saw. I needed the childcare card on the key ring, so I asked Sal for the keys. When he asked “What for?” I snapped “Just give them to me.” Because I wanted to do things quickly and not have a conversation about keys while people were trying to hear the sermon. In hindsight, it wasn’t very WWJD of me.

So I took the baby and rushed out to the foyer. At the check-in computer, it would only give me the option to check out, not check in. I thought maybe if there’s someone in the nursery that knows me well, I can leave him anyway. Buuut then I realized I left the diaper bag, with his bottle, in the sanctuary, all the way at the front. I was not about to walk all that way past all those people and back with a crying baby. I looked at the keys in my hand and decided I’d just take him to the van and nurse him. The back seat has tinted windows and screens to block the sun, so nobody can see in. I hoped that Sal would notice I left the diaper bag and come to my rescue, but he didn’t. Oh well, I needed a time out anyway.

When we were finally done, we went back inside, but everyone was coming out because the sermon was over. Sal came pushing my chair. I sat in it, and we tried to make our way through the crowd to find my daughter. He asked me a question, and when I answered, he didn’t hear me (a common occurrence when I’m in my chair). Someone else heard me and they said “What?”, so I told them that I was talking to Sal, but they didn’t hear me clearly and said “What?” again. Frustrated that nobody can hear me because I’m so far down and there are a lot of people around, I turn around to answer Sal. He had a Soda in his hand and his hand was over my sweater, so when I jerked around, his hand slipped and the soda splashed. He made a loud smacking sound with his mouth, indicating he was irritated. That hurt my feelings (again, in hindsight, he was irritated that the soda spilled, not necessarily with me). I felt like “Well, I don’t wanna be in this stupid chair where nobody can hear me, but I have to be.” So I got out of the chair and walked.

On Tuesday we stopped at the store to pick up a few things. I wanted to take my wheelchair into the store, but the baby was asleep, so we needed the stroller, which meant I would need to push the cart. For the first time, I decided to use one of the motorized scooters the store offers. That way I could sit down, and there’s a basket on the front for the items we need. I’d never used one before, because I’m always afraid I’m going to run someone over or knock down a shelf, but now I had no choice.

I was able to handle it ok without running in to anything, but all through the store I kept getting head shakes and eye rolls. I already knew why; in fact I kind of anticipated it. People see me, young and thin, and think I have no business being on that thing. That I’m just messing around, depriving some poor old lady who actually needs it. Same reason I get dirty looks in the handicap parking space. The fact is if I were 77 instead of 27, or if I were 50 pounds heavier, people would think I had the ‘right’ to use the motor cart. But I don’t ‘look’ like I need it. And kids these days just don’t respect anything.

As one gentleman stood there staring with his hands on his hips, I thought “Say something. I dare you.” Again, admittedly not the attitude I should have had. Sometimes I just get fed up. Well trust me sir, I’d rather be walking around just like you.

We went to the store again yesterday to pick up some supplies for a Relay fundraiser I’m working on. I used my wheelchair. And again when we went to the pharmacy. And you know something? I wasn’t in a whole lot of pain last night. I was able to sit on a stool and make dinner without having a breakdown about not being able to make dinner (something that’s happened every night this week. And at least once a week every week.) So it looks like the simple solution is to start using my chair when I go to the store or do other things that require a lot of walking, even if I don’t feel like I need to. I don’t like it, but it’s the smart thing to do. It will help me function better when I have to be on my feet.

So there you have it. I don’t always see my disability as a blessing in disguise. Sometimes I wish someone else had gotten it instead of me. Someone that doesn’t mind sitting on the couch all day. But I have to remember that nobody has it perfect, and we all have problems we have to contend with. This is mine, and it’s not as bad as it could be. Something good will come out of it. I can still have an effect on the world, even if I have to do it from my couch.

Sometimes it's difficult, but this face makes it totally worth it.

Sometimes it’s difficult, but this face makes it totally worth it.