How do you…

Starflight

October 21, 2011 By Priscilla 3 Comments

Okay, so on Monday I promised a post in regards to a tweet. It was also a facebook status. This might all make bit more sense if I had my complete story up.

I’m a slacker so I do not. Yet. I will.

Okay. Here was the tweet.

I’m not really sure what happened.

It’s been 12 years.

I live with what happened every day. I talk about it every day in some form or another. I think about it every day. It is my every day.

I NEVER ESCAPE IT.

So, why did seeing starflight UP CLOSE have that effect on me?

I mean, I saw starflight last month, when my state was burning. They were dropping water on a fire less than a mile from my house.

I can’t really explain what I felt. It happened so suddenly. We saw the helicopters in the parking lot. The boys were jumping out of their skin with excitement. We made our way to them. I was less than 10 feet away. I was standing off to the side to take pictures. Kids were climbing in. They were giggling. My kids were about 3 families back. They were now 2 families back. My heart started pounding. My breathing got heavy. My hands were shaking. I almost started crying. I had to take several deep breaths and smile. MY kids were up. I had to get close enough to touch it. I took the pictures but everything was foggy.

It was time to roll to the other side. MY boys were smiling.

Then they wanted to go to the back and see where the patient goes in. I wanted so badly to scream.

I managed to whisper to Charlie what I was feeling but there was nothing he could do. He was juggling Nathan and the boys were running off to look at the police helicopter. The exact same helicopter. Just a different paint job and different layout on the inside. I immediately calmed down. The feeling passed. It lasted no more than 5 minutes. Max.

Later, when it took off, I felt nothing. It was loud and I briefly thought about how loud it was from the ground and compared it to how loud it was actually being IN one but the racing pulse, heavy breathing, all that was gone. It didn’t return.

Filed Under: How do you..., Must Read, Networking

paralyzed 12 years today

September 12, 2011 By Priscilla 32 Comments

This evening, I will be paralyzed for 12 years. I won’t say I LIKE being paralyzed, clearly it’s not a walk in the park, but I will say that despite the complications I have an amazing life. I have a life that I would not trade for anything, even walking.

I want everyone to remember that life is truly what you make of it. I could be miserable and feel sorry for myself, but why?

I want to say THANK YOU to all my family and my friends and most importantly to my husband, Charlie, and my darling little boys.

I can’t, however, forget to mention my BFF Sarah. She was with me that night. I love you Sarah, and I can’t wait to meet your newest little man.

Edited to add:

I guess I shouldn’t forget all the doctors, nurses and staff at UTMB in Galveston and the staff at Warm Springs.

I very clearly remember, MIKE, my ICU nurse. I’m not sure how I remember him since I was so out of it, but I do.

Dr. Fuffoletto, the ortho surgeon that performed most of my surgery. If I recall it was over 10 hours.

Nurse Stephanie, when I went to the Children’s Hospital to start my surgery.

My therapists. Han, Sherrill, and Amy for sure!

Filed Under: How do you...

struggle within 2

August 26, 2011 By Priscilla 4 Comments

It’s Friday again.

Last week I promised that I’d post about struggle every week.

I’m planning to follow through on that promise.

So many of my loved ones face struggle far greater than mine, every day. I can’t talk about that here but I can only imagine their pain.

In all honesty, I don’t have much, unless you count a sassy 6 year old.

My biggest struggle this week? Accepting growth. My baby will be 7 soon and he’s a first grader. It seems like JUST yesterday he was coming home from the hospital. On top of that, my middle baby isn’t my baby anymore. He’s now a big brother and my BABY baby is growing every day. I had to pull out bigger clothes this week. He finally out grew his Newborn stuff.

Now I know why my mom had 9 kids….. (not that I WANT 9 kids).

So that’s my struggle this week. If you can call it that.

What’s yours?

Filed Under: Family, How do you...

Pinkle Toes Photography

August 18, 2011 By Priscilla 6 Comments

I met Michele about 2 years ago because our kids take Tae Kwon Do together. It was a few weeks later that I found out she was a photographer. I thought, ok, a lot of people are photographers, but I wanted to check out her work.

BAD IDEA. I was blown away with just the first picture on her blog. I’ve been hooked ever since. I immediatly became her facebook “fan” in addition to her friend.

Fast forward to my pregnancy with Lucas. My months and months of DROOLING were going to pay off. She was looking for maternity models for a workshop. She wouldn’t be taking many of the pictures but she’d be helping other amazing photographers learn some of her secrets. I applied and she wanted me. YAY

Fast forward again. The shoot went beautifully and then Nathan came into our lives 3 weeks early. I was tweeting and posting on facebook, while we were in the hospital. Michele contacted me and asked if I would be up for a newborn shoot. She was having another workshop and needed a model. I jumped on it. How could I say no?

Well, here they are. Make sure you check out the Pinkle Toes Photography Blog for samples of her work and if you need a new photographer for your family portraits, consider hiring her.

My next goal? I have to talk my darling husband into family pictures with her! Wish me the best in that one. Maybe it can be my everything present every year?! hmmm…. .

Filed Under: Family, How do you..., Uncategorized

He’s not a Saint.

June 6, 2011 By Priscilla 21 Comments

I love my husband. I think this post makes that abundantly clear, however I have something to say.

I do not hear it very often (in fact I can’t remember when I last heard it, so if you are trying to think about whether you said it to me you are probably safe *wink* ), but on the rare occasion people are just blown away that I met my husband AFTER my injury and they tell me how lucky I am and how wonderful he must be to have wanted to date and marry me.

Really?

That’s beyond insulting. Think about what you are saying if these words cross your lips.

I’m lucky that he would want me?

It may not be what you mean, but in my mind, that implies that I am less of a woman. Less of a PERSON, because I can’t use my legs.

Would you ever look at someone that was anorexic and tell her she’s lucky her husband wanted her because she’s too skinny? or a woman brunette she’s lucky her husband wanted her because she wasn’t blonde?

No, they aren’t exactly the same thing, but that is all it is to me.

I still cook. I still clean. I still drive. I still have sex. I still do EVERYTHING any other woman would do, so WHY should I feel LUCKY that I could “find” a man that would want me?

Again, I know this may not be what you mean or what you intend to imply but SAY what you mean… put your foot in your mouth over and over to explain what you mean because otherwise, this is what I assume.

Filed Under: Family, How do you...

NF & Pregnancy: my experience

May 31, 2011 By Priscilla 4 Comments

I don’t think I’ve ever talked about it on here because it’s never really been a problem in my life, but I have something called neurofibromatosis (NF). In fact, I know so little about it that I had to look up how to spell it. Here is the definition from Kidshealth.org.

Neurofibromatosis (NF) is a condition that causes tumors to grow on nerve tissue, producing skin and bone abnormalities.

Anyways, everyone has different probelems/experiences with it. I believe this can range anywhere from a few tumors and spots to HUGE tumors all over and major learning delays and in a very small percentage, cancer. What generally causes the problems is that the tumors grow. Mine have multiplied but have not grown. Mine are also only on the outside and we have not found any internally.

How am I affected? Well, every time I get pregnant I get more fibromas/tumors on parts of my body that are generally covered. (back and stomach) They seem to go away afterwards but not all of them.

Years ago I only had one on my stomach and my doctor actually thought it was a keloid. Years later I noticed 3 in a row on my leg, so my then doctor tested the tissue and it came back as being NF. I believe he said it was NF1. What prompted him to check? The “keloids” in addition to multiple cafe au’lait spots. (little-big brown spots). You can see the 3 spots and a cafe au lait spot below. You can also see several tiny spots near the cafe au lait spot that are not always there.

May was/is NF awareness month and I wanted to do a post earlier, but I forgot. That’s how little importance it is in my life. I know there are many out there that are DRASTICALLY affected by it, so I wanted to at least mention it.

That and at Lucas’ last doctor appointment it was suggested to see a geneticist based on the number of cafe au lait spots found on his body. Will doesn’t have any. I’ll keep you updated. Let’s hope his is as mild as mine .

Filed Under: Family, How do you... Tagged With: neurofibromatosis, NF, NF and pregnancy, NF1

Why can’t you walk?

May 9, 2011 By Priscilla 45 Comments

I love being a mom, I love to nurture; so in honor of Mother’s Day I wish to talk about something near and dear to me. It may involve your child.

I get this question from little kids (3-9?) all the time and each time it makes me giggle just a little. “Why can’t you walk?” “Are your legs broken?” or “why are you in there?”

At first the mom or dad is just horrified and humiliated that their child would ask me such a question, but they start to relax the moment they see me smile.

I will usually start with something simple just to see if that will pacify them. I simply state that my legs don’t work anymore. Kids, will be kids, so more often then not they ask, “why?”.

Hmm, I’ll usually twist my mouth a little and pretend to ponder their question as if it is the most important question ever. And it is. They really want to know.

Once again, I try to keep it simple. I tell them that we all have nerves in our back that are kind of like a cord on a lamp, and my cord was cut, so it no longer works. The nerves send special signals to your legs and arms so they move but my legs don’t get the special signals anymore.

The child will usually look at me funny and just say, “oh, ok”. It’s almost always the exact same conversation. The same looks. The same reaction from the parents. Yet, each time it makes me proud to know that a child has learned that they can inquire about things. They can learn about different walks (or rolls) of life. Everybody is different yet we all share the same desire to be a part of each other’s worlds.

Please, let your child ask questions. Don’t be afraid of what someone will think. Chances are, they would love to tell your child why their hair is blue, or they have a scar down their face. They want to inform you but if you don’t ask, how will they know you care?

P.S. I decided to link this post to a few linky parties.

Filed Under: How do you... Tagged With: disability awereness, disability questions, disabled, how to answer kids, kids and wheelchairs, paraplegic, talking to disabled, wheelchair, why are you in a wheelchair, why can't you walk

Old and gray

May 3, 2011 By Priscilla 2 Comments

Okay, okay. I may not be OLD, but I have gray hair! I was brushing my teeth the other night and it was sparkling, almost laughing at me, in the mirror. Charlie confirmed it.

Hmmmm. I’m not really bothered though. I’ve earned every.single.one.

Anyways, I made a look for Jill from Scarymommy.

Filed Under: How do you...

Baby kicks

April 26, 2011 By Priscilla 3 Comments

Someone asked if I was doing kick counts. I’m not. I know. That’s bad. Right?

Ok. Well, I’m not doing REAL counts. I am paying attention to when I expect Nathan to be kicking. In fact he’s kicking my lap top RIGHT NOW.

He tends to go crazy when I am sitting still or on the couch. It’s enough to be enjoyably annoying. You other moms know what I mean right? When baby kicks JUST enough and in just enough of a pattern that it’s gets to be like Chinese water torture, but you love it anyways? Yeah, that is what enjoyably annoying is.

I am LOVING all the movement though. This little man wiggles and squirms in ways that William and Lucas never did. Does that mean I am in big trouble when he gets here?

The ultrasound tech said it has a lot of to do with implantation and that since he’s in the back and the others (or at least Lucas) were in the front, I would definitely be feeling him more. Interesting.

We are scheduled to deliver on June 29th at 7:30. I have to be at the hospital at 5:30. That’s in the morning people. A.M.

My peri keeps reminding me that I can do an amnio at 36 and deliver earlier if lungs are mature. As of right now, I do NOT want to go that route.

I have started noticing that I contract (braxton hicks) when I do a transfer. If it gets intense I may change my mind. Here are some ultrasound pictures. Next week I will show you some belly progress pictures.

His mouth is open in this one (he was a thirsty boy – YUCK, as the tech said!! LOL)

Filed Under: Family, How do you... Tagged With: Baby, baby kicks, paralysis, pregnancy, third trimester, wheelchair

paralyzed 12 years today

struggle within 2

Pinkle Toes Photography

He’s not a Saint.

NF & Pregnancy: my experience

Why can’t you walk?

Old and gray

Baby kicks

About Me

Connect With Me.

Get me in your Inbox

The Wheelchair Mommy

Meta

Archives