Sunday, December 9, 2012

Happy Holidays!

I am just taking a moment to wish everyone a happy holidays! Whatever you celebrate, celebrate it well!

Sorry for lack of updates. Tis the season to be madly busy and sleep deprived, alas!

I'll be back in action soon ;)

Monday, November 12, 2012

Power chair misadventures

Being able to zip around on my own is a really nice thing. Unfortunately, I may be just a tad bit drunk on freedom and my lust for adventure is kicking in.

With my new wheels I have been going outside for walks with my son a lot. Usually on the pavement, sometimes on the grass. Today we were exploring and I came across a path that lead into the woods. It looked perfectly navigable so I gave it ago.

Then there before me was a long path that lead to a beautiful field. Yay! Pretty! And a path! So I went for it, and it was mostly fine except I hit a soft spot in the dirt--then I lurch to a stop, my wheels spinning uselessly as they grind a deeper rut in the soft earth. Oh crap.

So there I am, sitting in the middle of a field with my three year old, stuck. Couldn't budge. Luckily, because I'm not a complete idiot, I had my cell phone in my pocket. Called my husband. He knew where I was because he takes our son their to play hide and seek sometimes. He was on his way to work, but came back to help me out.

I'm home now, safe with my kiddo and feeling rather silly.

Needless to say, my Quantum Q6 Edge doesn't quite pass the off-road in the dirt test I put it to today. Woops.

Tuesday, October 30, 2012

Events with MDA and New Wheelchair!

I have had a couple of events since last I updated my blog that I would like to talk about!

I recently attended my first MDA Lock Up as Ms. Wheelchair RI. A Lock Up is basically a fundraiser. The MDA gets local businesses to bring employees over for lunch and they are the "jailbirds". They have to make phone calls to make "bail" where the money is donated to MDA to send children to MDA summer camp and all the other services MDA provides for communities and families with neuromuscular diseases.  I got to talk to many people about my story as a woman with SMA and all that MDA has done to help me and my family throughout the years.

Of course, I also got to speak and spread awareness for the Ms. Wheelchair foundation. You would be surprised (or at least I am surprised) how few people know that the foundation even exists. I love getting out there and just showing people what is possible. I love to promote the organizations that have changed my life.

In short, it was a lot of fun! My husband even called some family members to ask them to donate.

A jailbird at the Lock Up. He came in costume! How cool is that?

Erik and I also wore our stripes, hehe.

I also went to the MDA Halloween Bash held at the Exeter Harley Davidson. It was a family event that was a great time for kids and parents with games, trick or treating, a kids costume contest, pumpkin painting, prizes, burgers....and my favorite part, a potato cannon! Yes, they let me shoot some sort of cannon. You should be afraid! It was a lot of fun.

All the kids in the costume contest.

We did a theme for all of our costumes, because we are awesome/nerdy like that

On November 5th I will be visiting Hasbro Children's hospital to meet and spend some time with the children there. I even made and purchased some autograph cards to hand out! There's something I never thought I would need, heheh. It is pretty exciting! I'm wondering what else I can do to brighten the day of the children there.

In other very exciting news, I have a new wheelchair! It is my first power chair, and thus a huge adjustment. Since two serious falls that really set back my mobility, I had really lost a great deal of my independence in my home. Now, I have at least most of that back and I'm not quite so worried about having another injury. I am also getting a huge kick out of being able to chase my son around now. Mommy is FAST now, and it is really, really awesome.

Unfortunately my walls do not agree. I'm pretty clumsy with this thing! It is taking a lot of getting use to, and my house is getting a few accidental renovations....but I'll sure I'll get the hang of it! It is well worth it for more independence.

My son says I'm "Robot Princess Mommy" Heheheh. Let the reign of Robot Princess Mommy begin!

Monday, October 15, 2012

On pregnancy

Pregnancy has been on my mind a lot lately, and no, I am not having another baby. However, one of my good friends is nearing the end of her pregnancy and having a very hard time with it. She has CP, and now that she's near the end she's having a very difficult time moving around and is in a lot of pain. Thinking about you Jenny! <3

Additionally, there have been questions lately about pregnancy on SMASpace about pregnancy when you have SMA, so I thought I would talk about my experience with pregnancy. Later, I will talk about being a mother with a disability, but that will take MUCH longer! Heheh.

So, lets begin shall we? My pregnancy was planned. My husband had always wanted to be a dad, and we both knew he would be amazing at it. I got the 'baby bug' a bit early, but I knew I wanted to be a mom. I knew also that it would probably be the most difficult thing I had ever attempted. I cannot communicate to you the monumental excitement and anxiety I had in equal amounts. The question on my mind was "How am I going to do this?" which, when you have a disability, is a question you ask yourself an awful lot.

It was uncharted territory for me. At the time, I knew no one else with a disability who had had children. I did look, but there seemed to be very little in the way of information out there for me. So, I asked my doctor. I expected that he would try to talk me out of it, but actually, he told me to go for it. He warned that I might get weaker from the combination of weight gain and hormones, but that there was really no reason I shouldn't be able to have a fairly normal pregnancy.

Thrilled, out next step (besides the obvious fun part) was to get my husband, Greg, tested for the SMA gene. Now that we know so much more about SMA, you can check to see if your partner is a carrier. If he was, we would be faced with a difficult decision, because there would be a good chance any child we had would also have SMA--luckily, Greg did not test positive for the gene and so we were able to proceed. Of course, my son is certainly a carrier, but growing up, he will know it. Maybe, hopefully, by the time my son wants to start a family there will be a treatment.

So the journey began. About three months after I stopped using birth control, I got pregnant. We were thrilled. Everything was looking great until I went in for my 12 week appointment and the doctor could not find a heartbeat. He sent me in for an ultrasound and it was discovered that I had a missed miscarriage--which means the pregnancy was no longer viable. Devistated, I had to go and have a D&C at the hospital.

After my miscarriage, I was crestfallen. I worried it wasn't meant to be.

Another three months later, we went on a camping trip with our friends on our anniversary, and it was then we conceived our son. The unrestrained joy wasn't there--we were more cautious now. The first trimester was the most difficult for me. Not only was I always worried I would miscarry, but hormones have always had a tremendous effect on me. I was tired so much of the time I feel like all I did for those first 12 weeks was sleep and eat. And that was really accurate! Moving around was do difficult just because my muscles felt so weak and tired all the time. It was the way I feel when I have PMS, but it didn't go away!

Second tri brought relief and a return to normalcy, as it does for many women. Finally, my baby bump appeared and I felt pregnant instead of just fat! And while I was gaining weight, most of my strength returned and I felt more like myself. I only had to take one nap a day, haha. It was during that time that something really began to change in me. As you know if you read my other entries, I struggled with body image for a long time. My body was always something that could never seem to do what I wanted it to be able to do. But watching my stomach grow hard and round with my son, watching my body nurture a whole other life? I began to love my body. It was an amazing thing. I even liked to look at it! I loved the firmness of my bump. I was one of those pregnant women who was always touching their bellies.

Third trimester came and I was tested for gestational diabetes. Knowing I had a family history of it, I was unsurprised that I had it. I was pretty upset! No more huge bowls of mashed potatoes and gravy for me....but, I was able to manage it with diet.  AND, I only gained 20lbs for my entire pregnancy, which is just awesome. I was huge though. All in the belly. My son was almost 9lbs when he was born!


I only suffered one fall during my pregnancy, and that was bad enough! I fell in the bathroom, and while I didn't hurt myself falling, I hurt myself getting up. My husband usually lifts me around the middle, but as I was almost 38 weeks pregnant at the time, that was a lot more difficult! Ended up bruising some ribs, but the baby and I were alright. We were lucky.

Now, my OB was excellent and extremely encouraging and supportive. He didn't think I would need a c-section, but we would be prepared for one just in case. I worried, and worried, and worried, wondering if my body could handle the rigors of labor. What if I didn't have the strength to push?

In the end, I did. I had a natural, vaginal birth and it was amazing. I felt one with the universe. The worst part is when you can't push. Once the doctor gives you the okay to start pushing, your body and your mind become indestinguishable. The whole essence of my being was focused on birthing. After a 14 hour labor and no sleep, I was exhausted. I was so tired I was drifting to sleep between pushes! I was pushing for an hour, son was born.

I had never, ever been so exhausted or so proud of myself. It was the beginning of a new appreciation of my body, and my life.

There we are, the family! 

There's my little boy, awake and peaceful on mommy. His eyes were open right away.

So, if you have any questions, leave them in the comments and I'd be happy to answer! 

Saturday, September 29, 2012


Hey all,  sorry I haven't updated lately! I have been so tired. I don't know if it is the time of the year or what, but my brain seems to turn to pudding more often than not!

Anyway, an exciting development; I got professional pictures done as Ms. Wheelchair RI. So exciting! They were taken by the amazingly talented and kind Laurie Brandt in her studio in Coventry. I had my hair and make up done by Brittany Briere, enjoying the chance to feel like a model!

It was a wonderful experience and I really love the photos! If you want a sneak preview, check my Facebook page!

Monday, September 17, 2012

Adventures at King Richard's Faire

So, if you have not noticed already, I am a bit of a geek. Okay, more than a bit. I am considerably geeky.

One of my many geeky pastimes is Renaissance Faires. Every year we attend King Richard's Faire in Carver, MA at least once. The faire is open ever autumn and is always an excellent time where you can dress up with your friends, eat giant turkey legs, watch men joust and sing tavern songs among many other things. Oh, and shop! Did I mention shopping? Because seriously, the shopping is amazing. So many wonderful things.

There I go again, getting derailed by shopping.

Anyway! This was an especially exciting year. We got to attend the faire with a large contingency of our dear friends, which automatically made the day far more awesome. Even cooler, I got to go with my friend Melly from Colorado who flew in to spend the weekend with us. We had not seen her since I was pregnant! We had some quality bonding time at the Ren Faire, as she is also a Renny, as they say. Big time. She worked the circuit for a while.

As if that wasn't enough? There are special events on Saturday's, and this one was the Cleavage Contest. Yes, you heard me. Cleavage contest. Melly, my friend Jenny and I were all excited to wear our corsets and enter, just for the fun of the experience. Our men were excited because--well, you know why.

That's why

I probably do not need to say that I was the only woman in a wheelchair on that stage, strutting my stuff and what not. Indeed, the had to somewhat modify the competition for me. They most certainly didn't expect me, but the workers at the Faire are excellent people. It was so strange being up there in front of, no lie, hundreds of people. I didn't feel any fear. No nerves. Which seems very strange to me now. The competition was intimidating! Beautiful women with the kind of moves and bodies I'd always wished for.

It went like so. Three judges were chosen from the audience. The judges got to pick their two favorite contestants, then the hosts of the contest chose wild cards to move to the next round. The next round, the audience cheered loudly for their favorite. The energy was incredible. The response from the audience was amazing.

After narrowing the contestants down again, there was a trampoline jumping portion. You can see why this would be a problem for me, I am sure! So they asked my husband to come up and just shake my chair around instead--which he did, with alarming vigor. I thought he was going to break it. Or me. Or both.

Narrowed down again, now down to three--and I was among them. It was time to go out into the crowd and collect money from the audience. Half the money collected by each of us would go to a charity that helps employees of the Renaissance Faire during financial crisis. The rest? We got to keep.

Since I could not go out among the crowd, I had one of the hosts doing so for me, but even with her there people were coming up to the stage to give me money because they couldn't reach her. It was so overwhelming and so much fun.

They counted the money. I collected 245 dollars. Most of it in small bills.

I won. I won half that money, two tickets to the faire, and a new corset (extremely exciting I assure you!)

My new corset!

While I sat up there, looking out over the audience, I couldn't help but notice the other people with disabilities. There was a girl in a power chair there, and all I could think was that I hoped she saw me and felt empowered. We can be beautiful. We can be SEXY. We can totally win cleavage contests, apparently!

I know I helped a lot of people look at people with disabilities differently that day. That was the best prize.

The smile on my husband's face comes in a close second.

Tuesday, September 4, 2012

MDA Show of Strength

This Labor day Weekend was the MDA telethon. They are calling it the Show of Strength now. I won't get into any of the politics surrounding the history of the event.

Suffice to say, MDA has supported me and my family a lot over the years and I was happy to appear on the Show of Strength to talk about Ms. Wheelchair America, what it was like to have the national pageant in RI, and a bit about my platform. I hope that whoever wanted to see it got to, and I hope I'll be getting requests to speak and appear at more events soon! :D

I also got my crown! It is stunning. So excited. I could not stop grinning.

Kristin Conners, myself, and Doreen Scandlon from ABC6

Sometime this week I should be meeting up to plan out my year as Ms. Wheelchair RI. Very excited! I hope that I will be able see my dreams come to fruition.