A New Adventure

I have some exciting news: my (dis)abled life has now become its own website, mydisabledlife.com! I am really, really excited about this, and all of you, if you are willing, can help my goals become a reality by doing a few easy things.

Step 1: Go to my new website and follow me there instead of here, by subscribing by email right there on my page.

Step 2: Keep reading! I know it’s not as convenient as having it right here in the WordPress feed, but I love being able to share with all of you, and celebrate and commiserate. Let’s stay in touch!

Step 3: Share! This one is just as important. I want to have an affect on the world. Not just me, but the disabled community, and our friends. We see things differently, and our point of view is vital to making the world a better place. If you read a post that gets you revved up, please share! I have convenient little share buttons under each post, even on the mobile version, where you can share to just about any social network, and even email a post. Please do!

A few other things I want to mention:

  • My plan was to contact you all individually, but I couldn’t figure it out. Ironically, I am not very good at technology.
  • Speaking of not being good at technology, my site is not perfect yet, I’m still working out the kinks.
  • There is probably a better, preferred way to go about letting you all know to go to my new site, I just don’t know what it is. (See bullets 1 &2)

Thank you to everyone, for supporting me this far. I hope we can keep the relationship going!

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.

Coolest. Mom. Ever.

I have to admit something. Something that I have never admitted to anyone. And now I’m telling (potentially) the whole world. Ever since my daughter was born, and even before that, as a kid when I imagined having my own kids, I wondered if my disability would be a point of embarrassment for her. I wondered if it would drive us apart. If the things I couldn’t do, which were less back then, would affect our relationship. If I wouldn’t have the same opportunity to be close to my kids as I would if I didn’t have a disability.

I knew it would probably be ok until she started school. But then, maybe the questions, and probably teasing, from the other kids; mixed with the need to fit in, would turn her against me.

Or maybe. Maybe I could teach her to be different. Maybe I could teach her that everyone is different. That we’re supposed to be different, because that’s how God made us. Maybe I could teach her to be friends with the kid everyone teases. To stand up for him, even when it’s not the ‘cool’ thing to do. That people who use wheelchairs, or leg braces, or walkers are just like everyone else. Maybe I could teach her to be a leader and not a follower. Maybe she wouldn’t see me any differently than she saw the other moms.

Fast forward eight years, and it’s not as big of an issue as I worried it would be. There have been a few times when I wished I wasn’t handicap for her sake. Picking her up from school is like going back in time; all the kids staring at the girl who walks funny. I see the expression on her face and I know it bothers her. She tells me she doesn’t like when people stare because it’s rude and it might hurt my feelings. I’m glad she knows this. I’m pretty used to staring and usually I don’t let it bother me, but I’m glad she knows not to stare. Not to hurt someone else’s feelings.
And when she says she wishes she could walk or ride her skateboard to school, I have to say, “I’m sorry, but I can’t walk that far, and you can’t go alone.”

When I imagined being a mom, I imagined taking my kids camping and on hikes, helping build houses in Guatemala, or even just walking them to school. I can’t do any of that now, but I have to remind myself of the positives.

The positives are that she is friends with everyone. That she doesn’t let the way people look or what they can do determine her friendships. That she is just as good of friends with the girl in the wheelchair as she is with the one on the soccer team.

And then there are the times that she has stuck up for me. The time when they didn’t know I could hear them and her friend who had spent the night said “What’s taking your mom so long?! It’s just cereal!” and Romi said “She hurts. She’s in a lot of pain and it’s hard for her to walk. So you shouldn’t say things like that. Besides, we could get our own cereal.” Or the time when the little girl at school said “Why does your mom walk like that?” And she said “She’s right here, why don’t you ask her. She doesn’t mind.”

She’s usually surprised when I thank her. Surprised because she didn’t know I heard what they said, and surprised that I am more glad that she did the right thing than upset at what the other person said.

Needless to say, I don’t usually feel like the cool mom. When my friends are making blue pasta or spider web snacks for preschool out of pretzels and white chocolate, I can usually barely handle heating up leftovers or making a sandwich. While I would love to take them camping or to help underprivileged people in a third world country, there are times when I can’t even get off the couch to take them to the park.

But that feeling changed last weekend. Last weekend our church hosted a ‘drive-in’ movie. They were going to show the movie Cars on the big projector screen in the sanctuary, and the idea was that parents would help make cardboard cars for the kids to sit in while they watched the movie. I love a good, challenging project, and this was fun because the whole family could get in on it, and then we could have some fun watching the movie and hanging out with friends.

After finally finding some boxes the day before, we got to work. One of the boxes was big and long, so Romi decided he wanted a VW bus that she would decorate as a rock star tour bus. So I sat in a chair and directed while Sal carved out the design. Romi also decided she wanted it to be a convertible, so we had to get really creative. After about four hours, we had a convertible VW rock star tour bus, complete with license plates, working headlights and tail lights, a convertible roof, and a VW logo.

 

CardboardCar

 

I posted a picture of it on Facebook, and my cousin made the comment “Coolest. Mom. Ever.”

Seeing those words was a turning point for me. A realization of something that I already knew in theory, but hadn’t let myself really believe: Being a cool mom, a good mom, a mom that is close to my kids, didn’t have to be determined by what I couldn’t do. I could let it be determined by what I could do. Maybe I can’t spend all day creating a Martha Stewart style dinner. I might never be able to take them camping and on a hike through the woods. But you know what? I can create a pretty awesome cardboard car while sitting in a chair. I can help her find videos on YouTube so she can learn how to do the worm and spin on her head, to work toward her dream of being a rocks star/hip hop dancer. I’m one of the few moms that would let her cut her hair short and dye her bangs red and blue, and I can even help her start her own blog.

So yeah, maybe my cousin is right. Maybe I am the Coolest. Mom. Ever.

Don’t let anything be determined by what you can’t do.

“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.

Cerebral Palsy Awareness: Complications and Associated Conditions

“Cerebral Palsy doesn’t get worse.” That’s what I was told when I was a kid asking questions. Technically, that it true, but as I have discovered, in some ways, things do get worse.

As I discussed in my first CP Awareness post, Cerebral Palsy, by definition, is brain damage. The complications and associated conditions are the tangible evidence of the brain damage. A person with Cerebral Palsy might have all or only some of these. I, thankfully, have only a few. But I am finding that the older I get, the more ‘complicated’ it gets. According to mayoclinic.com, these are some complications of Cerebral Palsy:

• “Contracture. Contracture is the shortening of muscle tissue due to severe tightening of the muscle (spasticity). Contracture can inhibit bone growth, cause bones to bend, and result in joint deformities, dislocation or partial dislocation.”

This is a complication I have. Despite surgeries to lengthen my muscles, the spasticity in my legs is very noticeable. My hip flexer actually pops out, and my left knee is permanently twisted inward. When I stand, my knee is not in the center, but to the right of my leg. It wasn’t always that way. That is from the tendons being too tight while I grew. Growing pulled at my tendons like resistance bands, forcing my bones to accommodate.

• “Depression. Social isolation and the challenges of coping with disabilities can contribute to depression.”

I don’t think I’ve ever been ‘clinically depressed’, but there have been times that I’ve been worn out, physically and emotionally; as well as feeling isolated. Looking back, I’ve noticed that during those times there was a drop in school or work attendance and performance.

• “Premature aging. People with cerebral palsy often experience medical conditions in middle age that are more commonly associated with older age. Such premature aging can result from significant stress on the body and poorly developed heart, lungs or other organs that may not function at a typical capacity.”

I haven’t reached middle age yet, but my CP is mild, and I don’t have a reason to think any of my organs are ‘poorly developed’. I do have a little concern about the fact that I take medicine on a regular basis, and how it might affect my body in the long run.

• “Post-impairment syndrome. This condition is characterized by pain, fatigue and weakness resulting from stresses on the body, movements to compensate for disabilities and the significant exertion of energy needed for everyday functions.”

I couldn’t have described my everyday physical state any better. As I mentioned, it wasn’t always this way, but it has gotten better since I ‘dropped out of the rat race’. I thank God for that, and I’m also praying that I don’t lose more mobility as time goes by. But I know that if I am not working, it is because God has something better for me. There are countless mothers that wish they could stay home with their kids, and I get to do it. I do not take that for granted. I also know that that is not my only purpose, and I want to help as many people as I can.

• “Osteoarthritis. Pressure on joints or abnormal alignment of joints from muscle spasticity may result in the early development of painful degenerative bone disease (osteoarthritis).

I think I might have this in my hip joints. That is the joint that connects your femur to your pelvic bone. I just read that it’s usually treated by hip replacement, which kinda freaks me out.

Associated conditions are a little different from complications in that they are usually directly from the brain damage (issues from the beginning), where complications come down the road (side effects from the body wearing out, so to speak). Here are some of the associated conditions of CP:

Impaired vision and/or hearing

Malnutrition and/or failure to thrive– Difficulty eating and swallowing because of low muscle control can cause malnutrition, growth, and development problems.

Yeah… let’s just say I’ve never had a problem with malnutrition…

Although, my mom told me that when the doctors hooked me up to those wires to help them see how my muscles worked, they told her that I burn two or three times the amount of calories as others doing regular tasks, like walking across the room. This is because it takes twice the effort.

Mental Impairment

  Incontinence – This would be due to lack of muscle control

Speech and/or drooling problems – Also due to lack of muscle control

• Epilepsy

Dyslexia and/or ADD

So my problems from CP are mobility related, and I don’t have any associated conditions. I hope that I don’t lose any more mobility. I’m still trying to find the balance between living life to the fullest now, and ‘saving my mobility’ for later. One of my doctors told me that I should stay seated and use my chair as much as I can now, so that I can put off the loss of mobility. I find that very hard to do. Especially with two kids, but also because I don’t really like using my wheelchair. Don’t get me wrong – I’m grateful for it when I really need it, but I find myself pushing my limits to stay out of it. Everyone tells me I’m too independent, and maybe that’s true…

But while I search for the balance and believe for the best, I hope I teach my kids not to put limitations on themselves or others. That it’s not your circumstance that matters, it’s your attitude. To not be afraid of the ‘what-ifs’.

You can be Supergirl, even with a broken arm.

You can be Supergirl, even with a broken arm.

Catwalk in a Wheelchair

I’m interrupting my CP Awareness series to bring you some breaking news: Yesterday I got to model in my wheelchair.

As some of you know, my uncle was diagnosed with cancer last January. To show our support and help fight cancer, our family has participated in Relay For Life the past couple years. Macy’s does a Mother’s Day brunch and fashion show to support Relay For Life. They use volunteer Relayers to model some of their new clothing. My daughter loves to be in the spot light, so she was super excited to volunteer. They said they wanted mother/daughter teams, and she really wanted me to do it with her, but I wasn’t so excited. Let’s just say she doesn’t get her love of the spotlight from me. I wasn’t so sure, but I didn’t want to disappoint her. A million things ran through my head, the first one being a clear vision of me tripping and falling in front of a restaurant full of people. So I thought, what if I modeled in a wheelchair? I wouldn’t be as nervous, there would be no falling, and I wouldn’t have to worry about how long of a ‘runway’ it was or whether there would be chairs behind the curtains or in the dressing room. I asked my aunt about it and got into contact with the people in charge of the event. Everyone liked the idea, so reluctantly, I went for it. We had a fitting at Macy’s last Friday, and the brunch and fashion show was yesterday at a local restaurant.

There were a few teams of models, including my aunt, cousin, and beautiful 7 month old niece, and the cutest, nicest, spunkiest little elderly lady I’ve ever met. I was pretty nervous up until the first couple teams went, and then I started to calm down. The weird thing is, in situations like this, it’s not the strangers that make me nervous, it’s the people I know. Am I alone in that?  I was pretty sure my mom was gonna start cheering and clapping (Love you mom!), but she didn’t. Somebody did do an “awww”. I hope they were doing it for my 8 year old… but I think they were doing it for my wheelchair.
The ‘runway’ wasn’t too long, but there were no chairs backstage. The fitting room was the bathroom, so there were no chairs there either. I wouldn’t have been able to stand that long, and I can’t get dressed standing up, so I’m really glad I did it in my wheelchair.
It was fun though, and Romi is already making plans for next year’s cat walk 🙂

Here are some highlights:

Romi and me before the show. Rock n Roll!

Romi and me before the show. Rock n Roll!

Macy's outfit #1. Just keep smiling!

Macy’s outfit #1. Just keep smiling!

 

Macy's outfit #2

Macy’s outfit #2

Outfit #3. The lady called it a jogging outfit. I thought it was kind of ironic...

Outfit #3. The lady called it a jogging outfit. I thought it was kind of ironic…

She liked this dress and jacket so much she used the gift cards they gave her to buy it after the show :)

She liked this dress and jacket so much she used the gift cards they gave her to buy it after the show 🙂

I could never be a real model; I like my chocolate too much. But was a lot of fun, for a good cause; and everyone, especially the Macy’s ladies, was really nice. The clothes I modeled were pretty, but honestly… I still shop in the juniors department lol. Maybe if I still worked at the bank…

Happy Anniversary to Me!

One year ago today was my first day out of the workforce. I teared up on my last day; depressed that I wouldn’t be working at the bank anymore. That I wouldn’t get that promotion, my own office someday, the salary I dreamed of… but also ecstatic about the big plans that I had for my newly found free time. I would have time to keep my house clean! To cook actual meals! Have Romi’s snack ready when she gets home from school! Help out in her classroom! Do Random Acts of Kindness every day! Have polished nails! Play my keyboard and work on my DJ skills. Start that blog? Maybe even write a book that Hollywood makes a movie out of, starring me as myself (big dreams, remember?). But I would start by giving myself a break and taking my first day off, well, off. I had plenty of time to get to all that stuff later.

As you might have guessed, most of that doesn’t happen. There are some things I failed to consider, like the fact that I was pregnant, and I am not a productive pregnant person. Throughout both pregnancies, I was nauseous the entiiiiire time. 24/7, for nine months. I threw up at work more times than I want to admit. Getting off the couch or concentrating on anything only made it worse, so I tended not to.

Another problem was that being pregnant makes everything harder physically. I would imagine this is true for everyone. It was already hard for me to stand up and walk and balance. An extra 30 pounds hanging off my middle wasn’t helping. So I decided my big plans would wait until my pregnancy was over.

Well, the thing about pregnancy is that when it’s over, you have a newborn.

My house is still a mess, and it still seems like I don’t have time to clean it. I blame most of that on that fact that having a second child exponentially increases the amount of laundry, and that I’m lucky if I make it five minutes picking up toys or standing at the sink before I have to sit down. Also, the baby nurses a lot, and seems to only be happy in my arms. Fortunately, I’m a very good delegator, and I no longer have to wait for the weekend to have time to get the house cleaned up.

That whole cooking thing doesn’t really happen either. First of all, I’ve never really liked cooking. I mean, it takes an hour or two to make, twenty minutes for everyone to eat, and another hour to clean up. Total waste of time if you ask me. If I enjoyed it (or could get my husband or kid in on the fun), that would be one thing, but I don’t. Cooking is also very painful for me. It really hurts my back, legs, and hips to be on my feet that long. I’ve tried using a stool, but that doesn’t really work because you have to be back and forth from the stove to the counter to the sink. If only my wheelchair had a hydraulic lift (any inventors out there?). Also, I’m kind of hypoglycemic, and when I’m hungry, I’m hungry now. It punches me in the stomach with no warning, and I’m cranky and impatient and desperate. I do NOT want to spend 5 minutes, much less an hour, making an actual meal.

Also, it seems that every day there is a doctor appointment or a haircut appointment, or grocery shopping, or errands, or visiting a family member, or a birthday party, or something or other. Despite my efforts to plan meal times around these events, it just doesn’t happen. I should point out the fact that if I wasn’t married to a Hispanic guy who’s big on real meals, I would probably live on cereal and PB&J. Sal works nights, and I’m not going to cook a big meal for myself and an 8 year old who’s not gonna eat it anyway, so if I were going to make a meal, I would make it during the day when Sal could help me and eat it with me. Well, all of the afore mentioned events happen during the day, late-morning, because I can’t get around in the morning and he has to be back home early afternoon to get ready and go to work. I’m barely off the couch and around in time to get ready to go, much less cook something and eat it. Since he works late, he sleeps late, so the same is true for him. We have coffee and a little something for breakfast like muffins or bagels. By the time we’re done with whatever errand we had, we’re starving, so we hit a restaurant. Admittedly, we eat out way too often, which bugs me because I don’t like wasting money, but I can only do the best I can. Sal does not share my convictions about money.

As for the rest of those goals: Romi’s snack I usually start preparing when she gets home. And by prepare, I mean get out some crackers and make some chocolate milk. Maybe wash some grapes. Sometimes she has to get it herself. There are not as many opportunities, as it turns out, to help out in class in second grade as there are in Kindergarten or first grade. They’re older and there aren’t as many party days. Luckily for me she has a great teacher who doesn’t mind if I, and even the rest of the family, come to ‘help’ any day we like. I’ve only made it into the classroom a handful of times, but I love that I am able to do it.

Random Acts of Kindness have so far only consisted of the occasional batch of brownies for a friend or family member, just because. Playing the keyboard and working on my DJ skills? Well, between diaper changing, nursing, baths, and him crying every time I put him down, I haven’t worked on that a whole lot either. As we speak, the spots of nail polish left on my nails will continue to dwindle until I have the discipline to use the acetone.  The book writing was something I worked on the days that I couldn’t walk at all, but that doesn’t happen as often now that I’m not working. When I stop writing for a few days, I lose the train of thought I had when I left off, so it’s hard to get back in to.

And I thought not working would mean having time for manicures.

And I thought not working would mean having time for manicures.

The blog, as you see, is one goal that I’m actually carrying out pretty well. But I have to admit that the only reason I finally started was that as dawn rose on the new year, I realized that it had almost been a year, and I had nothing to show for it. Not a clean house, not a 3-meal-a-day menu, not a fresh manicure, and not a blog. I hadn’t started the blog out of fear. Fear that nobody would like it, fear of criticism from family members, fear that it would be yet another thing that I started but didn’t finish, fear that I would unknowingly break some internet law and end up in jail…

I realized it was now or never. Either I had to take the risk and get it going, one step at a time; or my worst nightmare was going to come true: I would spend my whole life doing nothing. Not making an impact on anyone or anything. Sitting in front of T.V. and magazines, living vicariously through my children, no excitement or adventure of my own. That is not where I want to be. I want an amazing life. I want to do amazing things. And I would never get there if I didn’t push my fears aside and take the first step.

Tea Pain

Remember when I said my disability only bothered me when it affected my children?

On Saturday mornings, my daughter, Promise (who prefers the nickname Romi), loves to have tea parties. She breaks out her plastic tea set or the glass Dora one she got from our friend Kate one Christmas, and we have tea (chocolate milk) and cake or cookies.  We haven’t done this since before her little brother, Cruz, was born; as she pointed out this past Saturday. “Can we pleeeeease have a tea party mama?” She begs using puppy dog eyes, and she knows she’s doing it. I say yes and tell her to go get the dishes she wants to use so I can wash them.

Anyone that’s spent a significant time around my daughter can tell you that while she has more spunky personality than any kid you’ve ever met, she is also very detailed, and likes to think out and talk out everything she does. So it takes her a good ten minutes to get the dishes, because she has to decide whether to use the Dora set or the plastic set, what color of cup I should have and what color she should have, and whether the plates should match the cups or be mismatched.

While she’s doing this, Cruz is getting louder and louder in his protesting, because he is no longer content sitting on my lap. Or playing with a toy. Or being held to my chest. Or lying down. The  minutes pass and seem to quadruple in length as it gets harder and harder for me to hold him while he pushes and pulls. Promise plays with the baby (or at least restrains him) while I wash out the dishes. This takes a while because the tea pot had been use to wash paint off of brushes, and the other dishes were sticky. I stand at the sink bent over, using my elbows to support me, trying to relieve some of the pressure and pain from my back, hips, and legs. I force a smile at Romi and ask if she can feed the baby while I get all the ingredients (she’s decided she wants hot cocoa tea instead of chocolate milk tea). “Can I get the ingredients and make the tea mama?” “Sure, I’ll feed Cruzy.” I love this idea, because I can sit down, feed the baby, and give her the directions, and she’s happy to make the tea. “Want me to bring in the high chair mama?” “No, I’ll just set him on my lap and feed him quickly while you make the tea.” forgetting that she doesn’t usually do things ‘quickly’. I take a deep breath and clutch the baby in one arm, using the other to get baby peaches, oatmeal, and a spoon. With him crying and trying to escape I manage to stir the oatmeal into the peaches. I get the first bite into his mouth and he is happy.

I remind Promise how to make the hot cocoa. She spills and splashes while Cruz helps with his spoon and smears baby food all over himself and me. I try to ignore the feeling that the bench is trying to imbed itself into my pelvic bone. By the time I’m done feeding Cruz, Promise has finished making part of a cup of hot cocoa, and I realized that it in fact would have been faster to use the high chair. I would have avoided having to wipe him off top to bottom and change his clothes. “Can I have marshmallows and whipped cream?” She begs. I feel a wave of frustration and I want to snap. I do a quick self-check and realize that my growing impatience is because of my pain, which I can now feel radiating through my arms and into my hands. This is a sensation that I can’t quite explain. It’s not that my arms or hands hurt, but it makes my arms want to writhe. It’s a reminder that I’m in a lot of pain – pain that I’m ignoring and trying to block out. Taking slow breaths I ask her to watch her brother, and I go take some medicine. It doesn’t help the pain immediately, but I feel relieved knowing it will be better soon.

Back in the kitchen, I gently remind Romi that it’s ok to have sugar in moderation, but too much too often is bad for you, and that she may pick one or the other. She picks marshmallows, and decides that we need another little container to hold the marshmallows at our tea party. And another when I tell her that I want to add instant coffee to mine. So I wash out two more dishes. She asks if we can have the little chocolate breadsticks along with our apple bread. For the sake of time I say she can if she gets them on the plates. I ask her to start taking the things out to the TV tray in the living room. “Mama…” she walks back in from the living room with an ‘I know I’m in trouble’ look. “I spilled the coffee. It fell over.” “Ok.” I breathe out, trying to hide my frustration. My whole body is screaming at me and I just want to sit on the couch and prop up my knees. What I thought would take ten minutes to make has now taken over half an hour. “Just clean it up the best you can.”

Finally, everything is ready. All that’s left to do is carry the pot of ‘tea’ to the table. “Mama, we should ask daddy if he wants some too.”

I pause for a moment. This would mean doing the whole process all over again. Making more ‘tea’. Toasting and slicing more bread.  Realistically, I know Sal doesn’t really like hot cocoa. He’d probably rather keep sleeping since he works late hours. Finally I decided we should at least ask, instead of me making the decision for him. Family time is important since he leaves for work shortly after Romi gets home from school. She asks him and he says yes. I ask her to hang out with her brother while I get daddy’s tea ready.

Finally we are all on the couch together, enjoying some very good ‘tea and cookies’, and laughing at our favorite TV show. With a pillow behind my back and another under my knees, the pain is starting to lessen. I smile at it all and I know it was worth it.

Definitely worth it.

Definitely worth it.

This might seem like kind of a sad story, but to me it is happy. It is progress. My back started bothering me a lot when Promise was about two years old. Somehow I wasn’t aware of the pain until I was in tears. I think part of the problem was that when I would go to doctors about it, they would brush me off and say that it’s just stress or I just needed to work on my abs. I was convinced it had to do with my CP, but they didn’t want to talk about that. Finally I found a doctor who took me seriously. Unfortunately there wasn’t a good permanent solution, but he helped me by getting me to therapists and AFO specialists, and prescribing medicines to ease the pain.

After taking medicine and not being in so much pain, I was able to better recognize when I was in pain, and that being in pain made me very impatient, because I was always in a hurry to sit down. I started to realize that I had been pretty impatient with Romi for the past few years, and I was determined to fix that problem.

So while it’s true that I am in pain, I thank God every day that I have the medicine and therapeutic techniques to help it not rule my life. I thank God that it is only pain and not a deadly disease. I thank God for wonderful little moments like this, in everyday life, that we tend to take for granted. And I thank God for the reminders to not take them for granted.

People, Places, and Handicap Spaces

I was talking to my friend Kate the other day, and she was telling me how a few days before, when she pulled into her friend’s apartment complex, someone was parked in the handicap space. The car did not have handicap plates, nor did it have a placard hanging in the window. There were plenty of empty regular parking spaces around, including the one right next to the car, so Kate parked there.

We encounter this sort of thing all the time. Every time I would go to pick up my daughter from school, there were cars parked in the handicap spots that did not have handicap placards or plates. After a few times of watching them leave their other kids in the car to go get the one coming out of school, it was pretty obvious that they didn’t just forget to hang the placard.

Despite the schools population of about 500 kids, the school parking lot is tiny. 20 spaces tops. So all the spaces were taken. Some might find this a valid reason for them to park in the handicap spots. Let me explain why it’s not.

  1. It’s against the law. Plain and simple. Interestingly, when a police car is parked near the school parking lot, non-handicap vehicles do not park in the handicap spaces.
  2. By parking there, they are saving themselves the inconvenience of parking at the curb farther away. Which means a handicap person (such as I) who needs the spot has to park at a curb farther away. It is very difficult for a handicap person to walk that far (especially while carrying a baby). That’s why they have handicap spaces. Sure some, like me, have a wheelchair. Have you ever tried to wheel a wheelchair up hill and over curbs? Not easy.

I ended up going to the school office and asking if they could do something to try to ensure that non-handicap cars didn’t park there. They were very helpful and said they too had noticed the problem and would take care of it. One of the cars that parked there no longer does. Another, however, and decided that parking in the white lines between the spaces is a good alternative. This is also a bad idea, because someone that needed to use a wheelchair or had trouble stepping up the curb, would not be able to get to the sidewalk.

Another thing we see a lot is people that decide it’s okay to park there if you’re just letting someone else run in and you’re going to stay in the car and keep it running. Newsflash: This is still taking up the space. When a handicap person comes along, they still cannot park there because your car is there. And if we’re being honest with ourselves, probably the only reason you would need to stay in and keep the car running is so you can quickly pull out should you see a police officer.

To my readers, please remember not to take up the handicap spaces if you are not handicap, or the lined spaces next to them. Instead, thank God for your ability to walk from that parking space that seems like it’s at the other end of the world, and see it as an opportunity to get some exercise.

There is another side of the problem of handicap parking: The fact that while I’m sitting in a car, I do not ‘appear’ to be handicap. Why is this a problem? Well, to me it’s not. But to the many people who glare at me as I pull into a handicap space, apparently it is. Since I can remember, even as a child, when our family pulls into the handicap space, passers-by slow down to check the plates, check for a placard (which we haven’t had time to hang yet), and smirk. Sometimes they were satisfied when we hung the placard. Other times they would keep staring and glaring until the saw the leg braces or the limping.

I thought this would end once I got handicap license plates. It didn’t. People still smirk and stare and ask if we know we’re parked in a handicap space. It’s usually elderly people in adjacent handicap spots that do this. Many have ‘under their breath’ complained that young people today are selfish and rude and have no respect. Usually I hear them choke on their words as we get out of the car and they watch us walk away. However, after a particularly unpleasant experience in a Walmart parking lot I made this Facebook post:

“Dear elderly people in the Walmart parking lot,

Normally, your staring and smirking and double checking my plates as I pull into the handicap space would provoke me to quickly get out of the car, start walking, and smile at you in that kill-em-with-kindness sort of way. However, today has not been my day, so it looks like it’s not going to be yours either. The fact that I am young and thin and wear makeup has nothing to do with why I’m parking in this space, but way to judge a book by its cover. You have your parking spot, so I really don’t know what you are so concerned about. And to the gentleman who when I was here earlier pointed out that I ‘appear’ to be a good mother despite my obviously crooked legs, thank you, I really needed your affirmation; and you’re right, there is no way to say that without being rude.

Xoxo,

Your friendly handicap shopper”

Ok, so it wasn’t my best day temper wise. Next time I’ll take a deep breath and count to ten.

There was a time when I felt like I was in the wrong. A time when I felt like I needed to quickly jump out of the car and parade myself around because I owed them an explanation. I no longer feel that way. While I know how frustrating it is to have a handicap space taken by someone who doesn’t need it, while I am forced to park at the other end of the parking lot, I also realize that handicap does not have a ‘look’. That handicap spaces are not only for the elderly or obese. That the owner of the vehicle may have simply forgotten to hang the placard. In fact, as many times as I forgot to hang mine, I’m still kind of in shock that I never got a ticket.

So, friends, the lesson here is that the ability to walk across a parking lot is not over-rated; and never judge a book by its cover.

Handicap does not have a ‘look’.

My daughter and I rockin it in the car :)

My daughter and I rockin it in the car 🙂