Special Exposure Wednesday

This strange flower (?) popped up in my side garden. It grew about 3 feet tall right in the middle of my iris bed. At first, it just looked like a ball (about the size of a gumball) sitting on top of a long skinny stem. Then it started to open up and look like this. We're calling it the alien flower, but if anyone has a clue as to what it really is, please tell me!

Not So Swimmingly

Ronnie loves to swim in our neighborhood pool. It opened this weekend, and already he has been there three times. But, I have an issue that may keep him from the pool unless I can find a solution.

Because of Ronnie's spina bifida, he is paralyzed from the waist down. He has no feeling in his legs and feet. When he first joined our family and went to the pool, I noticed that afterwards his feet and legs were pretty scratched up. But he had no idea because he couldn't feel anything.

We tried swim shoes, and after one or two trips to the pool, they were in shreds. Then we moved on to Converse sneakers. Again, after just a couple of trips into the pool, the canvas was shredded and the toes on his feet were scraped up. This year, I have tried scuba diving boots.

The boots were a recommendation of his physical therapist. In addition to being a little thicker than regular swim shoes, they would offer a little flotation and hopefully that would keep his feet from dragging on the sides and bottom of the pool.

But, after three visits this weekend, the scuba boots are starting to shred. And at $60 a pair, I just can't afford a new pair every week for him. Surely though, he's not the first person to face this issue.

So if anyone has any ideas, Ronnie and I would love to hear them. It will break his heart if he can't go to the pool this summer.

Thank You

While Memorial Day is punctuated with pool openings and barbecues, I don't want to forget the real meaning behind the holiday.

Thank you to all those who have made this world a safer place.

Thank you for allowing my children to dream.

Thank you for making it possible to envision a future.

Thank you for ensuring that this wonderful country lives on and on.

Thank you for making our barbecues and family gatherings possible.

Thank you for all your sacrifices.

Today my prayers are for you and your families. Happy Memorial Day!

The House That Stephen (re)Built

As a homeowner, it’s really difficult sometimes to know who to trust when it comes to repair people. And, it’s even more difficult as a single parent. We hear so many stories of unscrupulous contractors, electricians, roofers, etc., and then when you need one of those people, you worry about making a wrong decision. Even checking places such as the Better Business Bureau doesn’t always allay the fears.



But several years ago, I made a decision about a general contractor that was a very good decision. It wasn’t based on anything more than a gut feel – a sense that this person was honest, caring and good.

I had finally won my case to get Medicaid to pay for bathroom modifications for Ashley. Since this was a Medicaid funded remodel, I had to use a Medicaid registered provider. I got a list from the Medicaid website, and started making phone calls. One of those calls was different than all the rest.

Stephen Curtin, of Curtin Brothers Contracting, took my bathroom remodel job and in the process became a friend.

Stephen’s work is impeccable. He understands the inconvenience to a family that accompanies a major remodel, and he does his best to minimize that disruption. He kept me informed every step of the way, and involved me in all decisions. The end result – an accessible bathroom for Ashley – was beautiful. That was three years ago.

Since then, Stephen has built me a wheelchair ramp, modified the railings on my front porch to accommodate Ashley, remodeled a second bathroom, and replaced my attic steps. So, who was the first person I called when I realized I had a water problem in my kitchen? Stephen, of course.

Stephen is trying to move away from the home remodel business and start his own cabinet making company. But he didn’t tell me no, that he couldn’t help with the kitchen. In fact, he called and agreed to begin work the very next day. He brought his friend, Ross, a plumber, and together they have resolved my water damage and plumbing problems in the kitchen – all in two days. (Just for a point of reference, a contractor recommended by my insurance company estimated three times the cost and 4 times the length of time to correct the problem.

I know the quality of Stephen’s work. I feel his commitment to his customers, and I feel a deep comfort with his level of professionalism. I was very blessed three years ago when I pulled his name off a list, and the blessings have been multiplied many times since then. My house truly is the house that Stephen (re)built!

Thank you, Stephen. Thanks also to your lovely wife, GiGi, for being a partner in all you have done for my family. Thanks to Ross whose commitment and professionalism mirror yours. You are both fine men, excellent craftsmen, and people I hope to call my friends for a long, long time.

Galvanized

Here is the culprit to my water damage problem - a very disintegrating old galvanized pipe.



It wasn't the dishwasher connection as originally thought. Heck, that would have been easier to fix, so of course it wasn't going to be that.

So, after new floor joists, new studs, all new plumbing - no water access for three days - and a few kitchen cabinets taken apart - all should be well by Friday. And by Friday, I should be able to use my fancy new dishwasher.

Living in a 61 year old house certainly has its perks, doesn't it. Just for the record, Universe, I could use a break now.

Special Exposure Wednesday

Eating cake is a religious experience for Ashley! Especially cake with pink flowers! (Thanks for the great picture, Chip!)

LOVE THIS!!

The $6500 Dishwasher

So I decided it was time to replace my dishwasher. It was 14 years old and wasn't doing the best job of cleaning the dishes. I shopped around, found the one I wanted, and set up the appointment to have it installed. That's when things took a turn for the worse.

Apparently the 14 year old dishwasher had been leaking for the entire 14 years. There was a hole big enough for a basketball to fit through in the back right corner of the subfloor under the dishwasher. Not only that, the wood parts that hold up the house (notice I do not know any technical terms...) were rotted also. Even the brick on the back of the house right behind the dishwasher was damaged.

I contacted my insurance company, and of course, they don't pay for 'rot', as they said. They would pay to have my kitchen floor replaced, but I don't think anything is wrong with my kitchen floor.

I received the estimate today for repairs - $6200!! I will get another estimate, but oh my goodness, what am I going to do??

All I can say is that this new dishwasher had better clean the hell out of my dishes.

Mr. Debonair

The prom was a huge success for Ronnie! It was hard for me to tell what made him happier - having a senior girl ask him, getting all dressed up in a tuxedo, or dancing the night away. Here are some pics taken by my son, Chip, the burgeoning photographer...

The Bequest

Family heirlooms are not always made of silver and gold.

The tuxedo originally belonged to my Uncle Joe. He was the only one of 13 siblings who had a need and money for such a luxury back in the 50’s. Uncle Joe passed away in 1972, and when his siblings were helping to sort out his possessions, my father took the tuxedo.

The tux hung in my parent’s guest room closet for many years covered in silk to keep the dust at bay. I asked one day if I could have it to wear to a fancy event. I paired it with a ruffled blouse, and at that time, was very much in fashion in such an outfit.

Then the tux hung in my closet for many years. A friend borrowed it for her son’s school play. Another friend borrowed for a last minute school dance need. After each use, it was sent to the cleaners and then hung in its silk and moved back to its closet.

And now it is coming out again.

Ronnie was invited to the senior prom by one of his girl friends. As a sophomore, he couldn’t attend without such an invitation, but everything is set for this Saturday night. He will don the family heirloom for his night of revelry. He tried it on and it was a perfect fit. I don’t know how it has always been a perfect fit for everyone who needed it, but it has.

I don’t know what the future holds for this tuxedo. It still looks brand new, and because of its very classic style, it’s as chic now as it was in 1950. Ronnie looks so handsome in it, and I am thrilled that it is seeing a third generation in my family.

Good Bye and Good Riddance

(picture courtesy of Steve Marcus, Associated Press)


I read some good news today – Jerry Lewis’s annual pity party – excuse me, telethon – is only going to last 6 hours this year, not the normal 21 ½ hours. Then I read even better news – this will be Jerry’s last year for the telethon.

I wrote last year about some of the abhorrent comments made by Mr. Lewis, and about my opinions on those comments.

My opinions on this panderer of pity have not changed in the least. My children need to be accepted and included regardless of their disability. It is well past time for social change, not more money grubbing in the name of pity.

I’m all for research for cures and prevention, but I don’t believe you have to parade a bunch of ‘Jerry’s kids’ in front of the world to seek money for that research.

As Mr. Lewis shared on the CBS Sunday Morning Show on May 20, 2001, "Pity? You don't want to be pitied because you're a cripple in a wheelchair? Stay in your house!"

Sorry Jerry, we will not be staying in our houses and we don’t want your pity.

Good bye and good riddance.

Special Exposure Wednesday

Rochmond - Home of the Flying Squirrels baseball team. Home of Nutzy the super hero squirrel mascot and his acorn friend, Zinger. Then there is also the baby rally pig. This is Zinger with Ronnie...Really, I'm not making this stuff up.

Rain, Rain Go Away - At Least for 15 Minutes

Okay, we've had enough rain now. It needs to stop.

Mother Nature, do you understand how difficult it is for kids with canes and kids with wheelchairs to get around in the rain? There's no such thing as making a mad dash for the school bus in the morning.

Ronnie's wheelchair wheels throw water up on his arms and even with an umbrella being held over him, his legs still get soaking wet.

Ashley can only go so fast with her cane and holding on to my arm. Running frightens her, and she can't see the puddles that she splashes in. She starts the school day with wet shoes and socks.

I know we need the rain, but couldn't it just stop from 7:45 am until 8:00 am? Then the kids could get on the bus dry, and alight under the cover at school, staying dry and comfortable.

My lawn thanks you, Mother Nature. My newly planted garden thanks you. But, my kids don't.

Not an Option...Yet

As parents of children with significant needs, we've learned to adjust to the lack of sleep, the endless hours lost from work due to doctor appointments and such, and the stares of people who don't understand. But there is one thing that I, and some of my friends, are finding hard to adjust to.

As we lift, roll, turn, and steady our children who are unable to do those things for themselves, we are wearing down our bodies. At first, it comes as a general ache, a dull pain that over the counter pain relievers can help. Then it becomes more severe, and our doctors prescribe muscle relaxers, prescription pain killers, and such. But what happens when those things no longer work?

That's where I am right now. That's where my friend, Lynnette, and several others are also.

I have carpal tunnel syndrome. Lynnette has a problem with her bicep tendon. Another friend has intense back pain. And all our doctors recommend surgery. But surgery is not an option.

My surgery for carpal tunnel can't be done arthroscopically. It would involve an incision from the middle of my palm to about 4 inches down my inner arm. It's my right hand. The hand that hooks up Ashley's G-tube for medication. The hand that draws the medication into syringes. The hand that helps feed her - wash her - dress her. A surgery that would put me out of commission just isn't an option.

The same goes for Lynnette. She, like me, is the sole caregiver for her daughter, Brooke. She is the one that feeds her through her G-tube - the one who changes her trach - the one who hooks her up to the ventilator at night - the one who lifts and turns and bathes and changes. Surgery is not an option.

Yes, I realize that we may get to a point where there is no other option but surgery, but we hope and pray that we don't get there. In the meantime, we live with the pain, knowing it won't go away but hoping it will.

The people who don't really 'get it' say isn't there someone who can help you? Well, if there are, we haven't found them. People come and go in our children's lives, but their committment is to a job - 8 hours a day and then a trip home. We're just lucky if they show up for the 8 hours (which they sometimes don't).

Family? - nope, not in my case or Lynnette's case. Hiring a nurse? - nope, already losing so much time from work that money for nursing care isn't there. I just don't know the answer.

I'm not looking for pity, and I know Lynnette and my other friends aren't either. We deal with enough pity already. But if you do have some emotion to spare, understanding would be good.

Just in pain - just sharing - just wanting a little understanding...

One Sick Puppy

Blogger has been sick for a few days. Apparently some programmer made a change which sent all our blogs into a tailspin. I have heard that some bloggers lost several days worth of posts, but mine seem to be recovered.

Let's keep our fingers crossed that all is now well. I'll be back Monday on my regular posting schedule.

p.s. Dayla, I saw your comment of the CI post, but it is now lost also. It was published for about an hour before everything crashed.

Worth Another Try

When Ronnie was 4 years old, eleven years before I would adopt him, he received cochlear implants. When he joined my family, he still had the implants but none of the external processor parts. The few times he talked about the implants, he would say that he didn’t like them – that they were way too loud.

Personally, I have never been an advocate for implanting every deaf child. I don’t see deafness as a disability but rather a cultural state. I have never suggested that any other family not get an implant for their child, but for my family, it didn’t seem the right choice.

But now Ronnie is saying he wants to try his implants again.

Although I have no records from the time he was 4 years old, my belief is that there was little to no follow-up after his initial implantation. And, based on what I have read, follow-up is key to success with cochlear implants. So I wonder if now, with appropriate follow-up, implants could be of some benefit to him.

I contacted the doctor who did his implants at age 4. I spoke with both the doctor and the doctor’s audiologist. They gave me the contact information for ordering the external parts Ronnie would need, but then really tried hard to discourage even trying the implants again.

They said understanding and using speech would not be possible at age 16 – that all language development occurred by age 5. They said he might be able to hear some environmental sounds, but they wondered if that would be worth it to him.

Since then, I talked to Ronnie, to his teacher, to 2 speech therapists, and to an interpreter, and the overall opinion is that trying again would be a positive thing. It’s true that he won’t use speech and will still use sign language, but that he could hear some things that everyone believes he would really like to hear, most notably music.

So today I am calling the manufacturer of his specific implant and ordering the pieces we are missing. Since we will be relying on Medicaid to fund this, it may take a while. In the meantime, I would like to hear opinions from people who were implanted (or had their implants turned on) when they were older.

What were the challenges? What did you do to overcome those challenges? Do you still use your cochlear implants, or did you decided after trying that it wasn’t for you? And anything else you can think of…..

Special Exposure Wednesday

Ashley is rocking her cap she got at the baseball game on Mother's Day.

Peace out, Homies!

Striking a Balance

Do you ever feel like you over-react when you child with disabilities gets sick? I definitely do, but I don’t know how to strike a balance.

Ashley gets sick a lot – usually with cold-like symptoms, and those usually turn into a sinus infection and/or ear infections. I see other parents whose children have colds – snotty noses, coughs, etc. – and they don’t immediately take them to the doctor. But I do.

My over-reaction probably stems from an incident when Ashley was much younger. She was only 3 years old, and was sick with a pretty bad cold. She started to run a high fever, and was having some seizures. The seizure med that she was on at the time didn’t seem to work well when she got sick, or maybe just didn’t work too well anytime.

After several back-to-back seizures, I called 9-1-1. The rescue squad arrived within minutes, bundled her up and carried her to the ambulance. I followed in my car, except I didn’t really follow because with the help of a fireman, I had to scrape the ice from my car windows – I just headed to the hospital. I knew something was wrong when I actually arrived before the ambulance.

Ashley had gone into a major grand mal seizure in the ambulance. She stopped breathing, and the attendants were using a breathing bag on her. Things went from bad to worse that hospital visit when the doctors had to paralyze her to stop the seizures, and then, of course, had to put her on a ventilator.

That ambulance ride turned into a three month hospital stay that was touch and go for way too long. Ever since then, I get overly anxious whenever Ashley gets even a runny nose.

We’ve never had an event similar to that winter’s horrible seizure, but I still can’t relax. It’s been thirteen years, and I still keep a hospital bag packed for her.

Am I over-reacting? Probably. But what can I do to change? Any and all ideas would be greatly appreciated.

A Lot of Thank You

Ronnie gave me the sweetest Mother's Day present. It was a small bowl in the summer colors that I like so much, filled with candy and a handful of small cards - about the size of business cards. On each one, he wrote a 'Thank you' note.

Here's a picture, and then the 'Thank You' notes...I think he's a keeper, don't you?!



"Thank you for helping the State of Virginia at your job"

Our family makes lots of dirty dishes. Thank you for washing them"

"I like it when you make cake for me"

"Thank you for giving me a home and for giving me a good life"

"Thank you for talking to me and using sign language"

"I think you will take me to find out about my implants"

"Thank you for letting me play baseball in June"

"Thank you for buying me clothes. Buying clothes is expensive"

"Thank you for driving me to basketball. I like playing with my friends"

"Thank you for doing lots of laundry for us"

"Thank you for buying food for our family"

"Thank you for driving me to many doctor appointments"

"Thank you for driving me to PT so I can learn to walk"

"Thank you for cleaning the house"

"Thank you for taking care of Ashley, Corey, Chip, Jessica and me"

A Mother's Day Experiment

I know that there are many, many special things about your children, just as there are about mine. But let’s do something in honor of Mother’s Day.

Tell me one special thing about each of your children. I know it might be difficult to narrow it down to one thing, but just put the first thing that comes to your mind. Here’s mine:

Chip
One of the most intelligent and caring men I have ever known. And, he is only 20 years old.

Corey
So comfortable working with young children and animals. He really should consider a future in one of those areas, but the military is issuing its siren call.

Jessica
Never holds a grudge. People can say mean things to her, or make fun of her, and though she is immediately angered and hurt, she will forgive in a moment.

Ashley
The most inquisitive and fearless child I know. Those qualities have really served her well considering her disabilities.

Ronnie
A heart full of hope when it could be filled with anything but that. Even the hard life he has led up to now has not kept his spirits down.

Now, sometime on Mother’s Day, ask your children to describe the quality they like most about you. Then come back on Monday and let me know what they said!

Good - Not Good

GOOD

Katy at Bird on the Street has written a brilliant blog! Everyone - not just families of children with disabilities - needs to read this.

All I Ask


NOT GOOD

Monica at The Girl Who blog has written that she believes it is ok to drink while pregnant. She needs to meet my Ashley and every other child with Fetal Alcohol Syndrome caused purely by their birth mother's drinking while pregnant.

Monica, you can quote all the research you want, my research is a 16 year old girl who is deafblind, has seizures and Fetal Alcohol Syndrome - all because her birth mother thought it was ok to drink while pregnant.

I Drank While Pregnant

Special Exposure Wednesday

My brother, the professional photographer, always told me that you have to take a lot of pictures to get a few good ones. Now I understand....

A Different Fear

Though I am afraid of many things – camel crickets, roller coasters, etc – I only remember feeling that deep, in-your-gut type of fear a few times in my life.

Staring down a store robber who was holding a gun pointed at my head. Living with an abuser whose switch flipping I could never predict. And September 11th, when I watched the horror unfold on a television at my place of work knowing my children were 10 miles away in school.

That fear on September 11th was worse than the gun-wielding robber or the fist-wielding spouse.

I wanted – no, I needed – my children with me that day. Thinking rationally, I know I couldn’t have done anything to keep them safe if the terror continued, but I wasn’t thinking rationally. I just wanted us all in the same place, all holding hands, all knowing our world had forever changed.

I sincerely hope that out of the horror that was September 11th a safer world has emerged. Even though we complain about TSA, backpack checks at theme parks, and a constant guard presence in our work places, I don’t mind those things if I can feel a little safer.

But today, one day after the killing of Osama Bin Laden, the little spark of fear is back in my chest. Will we see retribution? Will our security measures hold? Will it be worse before it is better?

I know that I will keep very close tabs on my children. I know that I will have a plan to bring us all together should another terror arise. No less today than 10 years ago I want my family together to ride out any storms.

And to quote one of my favorite bloggers, Sheri, “I am not celebrating. I am not mourning, but I am not celebrating.”

An After-Easter Egg Hunt

VAAPVI, the Virginia Association for Parents of the Visually Impaired had planned a beeping Easter Egg hunt for the weekend before Easter. Unfortunately, we had a week and a half of monster storms, and the egg hunt had to be postponed.

It was held this past weekend, and the weather was beautiful! The beeping eggs were made by our city's police bomb squad, and then they were 'hidden' all over the football at the University of Richmond. They even made vibrating eggs for Ashley to find!

Everyone had a blast - well, except Ashley, when the Easter Bunny tried to make nice with her :)