What was I so worried about?

Caiden is a little over 5 months now.  He is so happy, just smiles all the time.  He is also just a laid back kid, nothing seems to faze him too much.  He is a social little bug!

Since the summer began (2 weeks ago!), I get to stay home with Caiden and just hang out with him.  I LOVE being at home with him.  I get to see him try to crawl, give me the MOST DRAMATIC frowns, and give me the happiest squeals and giggles.  I am also VERY protective of him.

I think the reasoning is that, well, first off, I’m a mommy.  Secondly, I feared (okay, I admit, I still fear) what others would say or think of him having a mommy in a wheelchair.  I get the vibe at times that some people are not too pleased that I made a conscious choice to get pregnant.  I could have “spread” my disability to him, or made his life harder than it needs to be.  WELL…to be honest…who’s life is NOT hard?  Seriously…!

However, the thought still stays in my head.  I keep thinking…well, I grew up like this (you know…not walking) and I’m used to the stares, the nervous smiles and the “OH @#*&$ how am I supposed to handle this situation” looks.  Chris (the hubby) married me knowing he would have to deal with the above types of people.  He is used to it.   I am quite in awe of how brave and self-confident he is about the whole situation.  It never bothered him, even when others were worried for him.

BUT…I brought a baby into the equation.  Caiden wasn’t really born into it (not really), and he didn’t choose this lifestyle or his mommy.  So, I fretted (as any normal mommy would do) about how others would treat him, what other people would say to him, or how others would treat me when he’s around.  I know I can do anything I set my mind to.  If you give me a challenge, or just tell me I can’t…well, I will do anything in my power to prove you wrong…and then some.  Still, you have people out there who do not know me well, and will still try to limit me.  Not really on purpose, but trying to be the good Samaritan, or trying to “help”.  It’s condescending.  Plain and simple.  I do not need to be taken care of and I usually don’t need assistance…unless I specifically ask.  =)  I don’t want Caiden exposed to that type of mindset.

Yesterday, for the first time ever…Caiden and I went out to a place that wasn’t with my husband or family members.  I took Caiden to the store.  Just me and Caiden.  I was so nervous and scared.  I wasn’t nervous because of the transferring in and out of the car, or being able to carry him around, that’s EASY PEASY!  It was how I thought people were going to react.  I thought people might stare at me or at Caiden and judge us. I thought people would be rude, or disrespectful.

I got out of my car, put Caiden in his front carrier and we rolled in to the store.  This is the store that Chris, Caiden and I usually go to every week.  It was so intimidating at first.  But everyone cooed and smiled and played with Caiden and greeted me in such a respectful manner.  The employees were so nice and friendly.  The customers were hilarious.  Chris was right…they weren’t judging, they weren’t disgusted.  They wanted to help.  They wanted to see what they could do to make things easier.  Why was I so worried?  I forgot, most of this world is actually…good.  =)

God knew what he was doing when he gave me Caiden.  We are a perfect match.

So, that’s one fear confronted….so many more to go.  But you know what?  I’ve got time.  =0)

Adaptability

Today was a good day. School is almost at an end, and summer vacation is fast approaching. It also means that Caiden is getting older…and more mobile.
Yesterday, I sat him in his pack and play and watched as he rolled from back to tummy and back again. He sits on my lap and we ride. He also nurses with his feet on my wheels. It’s amazing how adaptable babies are. Caiden somehow knows what I can and can’t do, and seems perfectly fine adapting to me.
I can’t wait to see what he will be like when he’s a little older (although parts of me want him to stay a baby!).
Ok…time for bed!

I’m back!

Caiden on our first family vacation!

It’s still hard to believe…my baby boy is almost 5 months old. He gabs, rolls, laughs and grabs. He is a bouncy baby boy, and he is ACTIVE! He loves to jump (with help from his mommy and daddy) and dance, sing and play. It’s amazing how much this little Zoomie has grown.

I think what amazes me so much is the fact that he was in my body 5 months ago! Now that he’s older, he is able to bear weight on his legs and stand on my lap and he TOWERS over me. He is tall!

Everyone asks “What’s been the hardest part of being a mommy and being in a wheelchair at the same time?”. Well, to be honest…being a mommy has been easy. Being a mommy in a wheelchair…well, that part is easy too. After all, it’s basically the same thing…only, I’m faster down a hill.

I think I had a few concerns before Caiden was born. However, I figured it out with time and thanks to my wonderful, supportive and amazing husband. Here are a few things that I had on my mind before his birth:
1. How on earth do I carry him?
Easy peasy! When he was a bit younger (AND A LOT SMALLER), I could fit him in the crook of my arm and then push my chair by gliding along a wall or whatever free standing furniture was close by. I still do that, but not as much since Caiden is able to sit in my lap. I also use a carrying pouch. As long as Caiden is facing out, he is happy. He is definitely a great rider!
2. How do I travel with Caiden?
Again…easier than I thought. I carry him to my car with my pouch. I am fairly (and unnaturally) strong, and so putting him in the car seat was very easy. Then I load myself in the car…and voila! Off we go!
3. How would others view me? Meaning…how would other people (strangers and acquaintances) react to me with a baby on my lap?)
I’ve taken Caiden to the store, mall, park, etc. many times now. I usually get positive (or puzzled) reactions, but never anything negative (knock on wood). I can let my imagination go wild some times and it never bodes well for anyone. =)

Actually, when I post on Facebook (granted everyone on my FB account is someone I know personally), I get pretty positive responses. I am usually greeted with supportive comments and friendly well-wishers. I had noticed that a group that I belonged to hadn’t had much to say to me during and after the pregnancy. I know that there are people out there that did not want me to get pregnant in fear that I would give my SB to my son. I don’t think people realize how hard the decision was for me to become pregnant. I did worry about my health…about my mobility…about my job. I worried about finances…I worried about money…about my ability to be a mom…about…well, everything…I’m human. I worried so much about what my in-laws would think or say or react to my ability to handle pregnancy and being a mom. I worried about my family…how would they react, say or think.

But now that I have him, none of that matters. Of course…my worrying didn’t help, hinder or solve a thing. In fact…it was a waste of energy!

My sisters, bless EACH of them, would listen patiently to my worries. It was endless hours of me worrying and countering each with a sweet and loving reassurance.

But now…he’s here. He’s in my arms and made his way to my heart. I couldn’t imagine life without this little boy. I couldn’t imagine life with out my strong and loving husband. There is a reason why marriages either get stronger or break when a baby is introduced into the family. There are so many things that we have to communicate to each other. There are so many compromises and teamwork. I feel like I’ve met a whole new part of Chris. I love watching the two together, it makes me feel so complete.

My boys!

Topic for this week: The Catch 22

Sometimes you can’t help but to overhear the chatter (complaining?) in workrooms, waiting rooms or lines in a store. You hear complaints about the national deficit, the states debt, budget cuts and yes…increased taxes. The “walking” (a term used to differentiate between individuals that use their legs to get from point A to point B with minimal or no difficulties, from the individuals who glide, wheel, hop, scoot, or truck, stomp, or limp to that same point) often complain about how their hard earned money is going into taxes that only help the lazy, invalid and yes…the cripples.
I sit back (as only a person who politely and mindfully brings their chair with them to every activity and errand would) and think, if they only knew.
Our social security system uses money that people earn and then deducts them from their paychecks (http://www.ssa.gov/ssi/). This money is taken and used to fund programs to help people who are not able to care for themselves. Typically, an SSDI (Social Security Disability Income) check can cover basic care such as: food, clothing, rent, utilities and medical expenses. Barely.
What people do not realize is most of the individuals I know that have disabilities WANT to work. They WANT to be productive members of society. They are not plotting at home to see how they can squeeze more from this government. They are not rejoicing and sitting in their mansions and hot tubs saying “SUCKERS!” to those who had to pay in to the system.
Times are tough, and with cut backs and layoffs, it’s been hard for even the walking to find jobs. Imagine not being able to walk, see, or hear, and competing for the same jobs. Guess who might not get considered? Then, imagine you applying for job, after job, trying to convince the potential employer that they can take a chance with you. But the chance never comes.
It’s easy to sit back and pass judgment and criticize when you never had to roll in their chair. It’s a frustrating process that is repeated again and again. No job, no money and resources are limited. Then, you realize, it’s time to apply for SSDI because you don’t have any other options. (cue pride swallowing) Now, you have money to live off of, medical insurance and stability. However, the opportunity to use your talents, to challenge yourself and to move up in this world is now a thing of the past. Now what?
Ah, the company that you have been waiting to work for had finally called and wants to offer you a position. It’s more money, but the medical insurance has a “clause” (not really a clause, but technical legal jargon that makes it impossible for medical supplies to be paid for because of a pre-existing condition; however it doesn’t state “pre-existing condition”). You take the chance. You are employed! Congratulations. But the first month supply of durable medical equipment (with insurance) costs you over $500.00. It eats a third of your monthly income and you do not have Medicare to help you any more. The medical bills increase, the ability to work decreases, stress is high and job performance goes down. Now what?
Life was easier and less stressful on SSDI and Medicare. See the cycle? Can’t have the job and opportunities without sacrificing healthcare. The desire to work loses over the desire to be healthy. Will you judge now?

I am not saying that this is how it is for ALL individuals. That’s how it felt when I was on SSDI. Not only was I being taken care of medically, but I didn’t feel the stress of piling medical bills waiting for collections to be called.
I did break the cycle.  I am fully employed and a “productive member of society”.  I  have found different ways to pay for my medical equipment and supplies.  I have learned that there are discounts for individuals who are paying in cash.  There are also discounts if you set up  monthly ordering. I found ways to pay for wheelchairs, and other equipment.  This is accomplished by using the services of DARS (Department of Assistive Rehabilitative Services).  They are a vocational rehabiliation service offered by the state of Texas to keep individuals with disabilities working. 

Unfortunately, it’s not like that for everyone. Not everyone has the resources and family support that I did. Not everyone has my abilities (or disabilities). It’s safe to say, I am a one hit wonder, but there are so many stories similar to mine. Feel free to post your stories, but I also encourage everyone who posts to share something they HAVE accomplished. How did you break free from the system? What did you do to help others? What CAN YOU DO TO HELP OTHERS?