A New World - Update

Last week I wrote about a new mom who had just recently given birth to twins. One of the babies didn't survive childbirth, and the other had significant disabilities. The NICU nurse asked me to stop by so the new mom and I could chat.

Many of you offered suggestions on what I should say or do during that first visit, and I appreciated each and every one. I'm a person who wears her emotions on her sleeve, and I knew I would have a difficult time knowing what to say and do. But because of your suggestions, I had a plan, and it really helped.

The mom and dad were both there when I arrived. Although their beautiful daughter was staying in the hospital, they had been released themselves a couple of days prior to my visit. Reluctantly they went home for a few hours each day but spent most of their time back at the hospital.

I could see the pain and uncertainty in their eyes, but I could also see the strength in their souls. I knew almost immediately upon meeting them that they would all be ok. The journey to ok might be a long and difficult one, but they leaned on each other and seemed to draw strength from each other. And the love for their daughter was so intense that I almost felt like I was intruding on a very private moment each time they looked at her.

Mom talked about the sadness of losing their other daughter. She cried but all the while rocked and stroked her surviving daughter. The funeral was planned for the day after my visit, and while I'm not sure that in that same situation I could have withstood the pain and loss, this new mom seemed distraught but without losing hope for the future.

Dad talked about having to go home and remove the doubles of everything baby - one crib instead of two, one swing, one car seat, etc. A darkness clouded his eyes as he described the removal, but a small light came back when he talked about donating the extras to a homeless shelter for mothers and their children. He stood with his hand on his wife's shoulder and frequently leaned down to kiss both her and their baby.

I softly worked into the conversation the story of Ashley and how I came to be her mother. I spoke of the challenges but also of the triumphs and joys. I told them about the supports that were available, and how much they had helped Ashley and me over the years. I described Ashley as an infant - not so different from their new little one - and then I described her today - a feisty, opinionated, happy teenager, a child who proved so many people wrong. I threw in the fact that some challenges would be daunting and that they might need to fight and fight hard along the way to obtain what their daughter would need. I honestly told them that some days would be darker than others, but that the light would shine more often than not.

I showed them some pictures and shared some funny stories. And I told them that whenever they needed anything, whenever they felt like talking, or whenever they just wanted a shoulder to cry on that I would be there.

I think the fear of 'aloneness' in their situation was what frightened them the most. I hope that after my visit, that fear was lessened a little bit.

They are a lovely family, and I think they will survive this, and overcome whatever challenges are thrown in their way. I will stay in touch, and I will keep all of you informed also. Please continue to include them in your prayers....

Brave Enough?

You know what I really want to see on TV - a show that has a character with severe disabilities. I don't mean a show ABOUT a person with severe disabilities, but rather a show the INCLUDES a character like that.

We've seen shows that include people with Down Syndrome, people with other intellectual disabilities, and people with physical disabilities like the current Push Girls show. But I want to see a person who uses a wheelchair, uses a device for communication, is tube-fed, and maybe even someone who has a trach.

I don't want that character to be the only thing the show is about. I want that character to be part of a family, or a group of friends - someone who is part of life, both its challenges and its fun.

Perhaps a show like Modern Family. Yes, it's a comedy and some of you may be thinking that there is nothing funny about a person with severe disabilities. I disagree. I have met some hilariously funny people, people who just happen to have several significant disabilities.

I know that Ashley is not considered severely disabled by some, although her diagnosis of deafblindness does sort of qualify her to use that label. She has a wicked sense of humor and always has. I've also met a woman who moves her power wheelchair by blowing into a straw. She loves to tease and play jokes on people and has the most infectious laugh ever.

It's time for society to want to be friends with people with significant disabilities. Most of the time, I think people just don't know how to be that friend, and a TV show could help.

What do you think? Is there a network brave enough to even consider such a show?

Yea, Friday!!!

Happy Friday, everyone. I know I promised an update on the little newborn whose mother I visited, but I'm not quite ready to go there yet. Rest assured, the wee one is surviving, and I will update early next week. But for Friday, I want some comedy. Here is a sign language version of the classic "Who's on First?" routine. Granted, if you don't know sign language, you may miss some of the comedy. But give it a shot. I'll bet you'll be surprised how much you can figure out...

"As far as we know"

Last week, Ashley came home from summer school with significant bruises on both her knees. One knee was swollen and needed ice applied. These bruises joined the other scattered over her body. No note came home from summer school and no phone call was received explaining the bruises.

I sent a note in the next morning asking what had happened. The response came home in the afternoon - "Ashley is doing so well in school. She is a joy to have around, and we are so glad she is a part of the program this year. As far as we know, she didn't fall, so the bruises must come from playing on the playground equipment."

Ashley is supposed to have a full time aide by her side at all times. A seizure can happen at anytime, and her aide is supposed to be there to assist, not to mention the fact that Ashley needs a sign language interpreter at all times. Yet, "as far as they know", Ashley didn't fall???

Monday afternoon this week, Ashley came home from summer school with a bad abrasion on the inside of her right arm just above the crook of her elbow. It was about the size of an egg. No note accompanied her again. I washed it and applied antibiotic ointment. But this time, I did not send a note in the next morning.

The next day, near the end of the summer school day, I receive a phone call from Ashley's teacher telling me that Ashley's aide just reported that Ashley scraped her arm going down the slide on the playground. They took Ashley to the nurse who applied "neosporin and a bandage." I mentioned to the teacher that the injury had occured the day before and her response was, "Oh." No explanation, no apology, nothing.

I'm just hoping Ashley makes it to the end of the summer school session without breaking a bone, getting stiches, or putting out her one good eye...

Special Exposure Wednesday

This year's drought has wreaked havoc with my vegetable garden and my lawn. But there are some plants that have flourished. Of course, all the weeds are doing just fine without rain as are my herbs, which I guess are just weeds themselves. In fact, the herbs were growing so big and taking over everything else in the garden so I moved them to pots to try to corral them. I think it's working!

A New World

Marla called me early yesterday morning. Marla is a nurse in the NICU at one of our local hospitals, and she and I met while our sons played little league T-ball many years ago. She also stopped by to visit when Ashley was in ICU about 10 years ago. Actually, I hadn’t heard from her since that time.

Seems a new mom was having a tough time. She had delivered twins last weekend – one of them didn’t survive the birth, and the other was significantly disabled. The doctors feared that the baby was deaf and blind. They knew she had trouble breathing and very frequent seizures. Her survival wasn’t ensured, and after witnessing the mother’s breakdowns every time someone mentioned her child, Marla asked me to stop by to see if the mother would like to talk to me.

I agreed but I was scared to death.

The only qualification I have for helping someone like that is the fact that I have been through some tough times myself. But, I didn’t give birth to Ashley, and I feared that added another dimension I was definitely unqualified to address. But I couldn’t refuse.

I will meet this new mom tomorrow, and between now and then I need to think about what I will say and do. Hopefully some of you can help me with that.

I can say I understand her fears but my understanding only came after the fact with Ashley. I wasn’t there at Ashley’s birth. I didn’t wonder if my baby would survive those first weeks, and I never had the dark secret thought that it might be best if she didn’t.

I didn’t question what my life would be like when my baby was sent home with me. I didn’t wonder if I would be capable of caring for her, keeping her alive, and loving her. Most of the hard times came long before I brought Ashley home at age 2. How can I sit next to this new mother, hold her hand, and tell her I understand?

This mother had no choices really. I did. I chose to bring Ashley into my life. I chose knowing that my life and my son’s life would be turned upside down. I accepted the fact that I was entering an entirely new way of living and parenting, and even more than acceptance, I wanted it. This mother wanted two babies, babies considered ‘normal’, babies that would need care and love but not tube feedings and seizure meds.

What do I say? Or, do I say nothing and just let her know that I am there if and when she wants to talk? Do I tell her the baby is ‘special’ and that she, the mother, will find the strength to love and care for her daughter? How can I really say that when I don’t know if it is true?

Do I ask how her husband feels, if indeed she has a husband? Again, this will be a point around which we will not truly relate. I made the decision to adopt Ashley as a single parent. I know many marriages don’t survive the birth of a child with severe disabilities. Do I say that? Do I suggest she see a counselor as soon as possible?

I sincerely hope this is a parent, or parents, who can find the strength to love and care for their baby. But if they can’t, I hope they also have the strength to let someone else do it for them….and I don’t mean an institution.

I want to help, but first I need your help.

Getting To Know Us

This was originally posted in 2008, but I've spoken to a couple of parents this week who may have missed it the first time...


WE...

• Listen for the cry of the baby we just gave birth to, only to hear a small moan

• Wonder why our baby is not rolling over, lifting his head, watching us move, or many of the other developmental milestones

• Know how an NG feeding tube and a heart monitor work

• Don’t understand why our baby feels so floppy

• Just want to see one smile from our toddler, one glance into our eyes that seems meaningful

• Have nebulizers, feeding pumps, syringes, tubing and extra peg tubes in our child’s closet, the car, and at school

• Keep an envelope on the back of the front door that lists all our child’s diagnoses, all the meds, and contact information for all the specialists who follow our child. This envelope is given to the rescue squad each time they come to our house to take our child to the emergency room. Eventually, we don’t need the envelope because all the squad members know our child. They even know where our child’s bedroom is in the house because they have been there so often.

• Greet the emergency room staff by their first name

• Know which schools in our school district offer which programs, and we know which programs to avoid because we have heard from other parents.

• Know and have had conversations with the school’s director of special ed, the compliance officer, and the superintendent. The secretaries for all those people have our names and phone numbers on speed dial

• Have a list of attorney's names and phone numbers pinned to our bulletin boards at home

• Often don’t attend church because we can’t find one that welcomes our child

• Avoid taking our child on errands because we can’t take the stares and rude comments

• Say we get used to the stares and rude comments and that they don’t really bother us. We are lying.

• Know the difference between occupational therapy and physical therapy, and we know that our child can have speech therapy even if he or she doesn’t speak.

• Know where to find the toys best suited for our child’s disabilities, but usually we can’t afford them. Instead, we know how to adapt regular toys and books.

• Have car seats and helmets for our teenagers.

• Probably haven’t slept through an entire night since our child was born – even if our child is 19 years old.

• Know the best way to remove feces from walls and clothes.

• Know how to strategically dress our sons so masturbation will be more difficult to accomplish

• Never leave the house without our child’s comfort item, and at least two backups to that comfort item.

• Long for close friendships, but usually have none. If we do have a close friend, it is usually another parent with a severely disabled child.

• Have alarms on bedroom doors so we know if our child starts to roam at night.

• Lock up medicines, foods, and sometimes even sharp objects.

• Know the names of IV antibiotics and at least 7 seizure medicines

• Know all the rules of the Family Medical Leave Act

• Fear what will happen when our child can no longer see the pediatrician and we have to find another doctor

• Have a freezer full of macaroni and cheese, and a refrigerator full of chocolate pudding.

• Know which hospitals have the best food in their cafeteria

• Know the type of doctor who makes prosthetic eyes

• Are deeply in debt because of all the stuff insurance won’t pay for, like home modifications, adapted devices, special clothes, lawyer bills, and the list goes on and on

• Have nightmares about what will happen to our child should something happen to us, the parents

• Love our children more than life itself

WE...

Are the parents of a child with a significant disability, and this list is only the beginning….

Please feel free to add to it.

No Souvlaki For Us

Yesterday I met my sons, Chip and Ronnie, at a Greek restaurant for lunch, the Greek Grill Cafe. Although the restaurant owners have had other establishments, this particular restaurant just opened in 2010. The food is authentic Greek food - spanakopita, souvlaki, moussaka and gyros - with some American food thrown in for pickier eaters (like Ronnie).

The food was indeed wonderful, but I can't say the same for the experience.

The first thing I noticed was that there were no handicapped parking spaces. I did see a concrete 'ramp' at the end of one parking space, but a car was parked there making the improvised ramp unusable.

Chip helped Ronnie get up the curb and onto the sidewalk in front of the restaurant. But then we noticed something else. Another curb-height structure, a small step actually, had to be navigated to get inside the restaurant. One of the servers came out and offered to help lift Ronnie in his wheelchair (with Chip's help) into the restaurant. But, wheelchair users often have difficulty both with someone touching their chairs and with creating a scene - and Ronnie would have considered it creating a scene.

So, Chip got him in - and out when we were finished with lunch - but I was really surprised that a newish restaurant didn't have to abide by ADA regs. I know there are lots of exemptions to the ADA, and I guess this establishment got at least one of those.

It's sad really. We love the food but can't accept the inaccessible facility, as well as the mindset of the owners who don't understand or accept the concept of accessibility.

(Interestingly, the photos on the restaurant's website show a person in a wheelchair inside the restaurant. I wonder why it was important to put the picture up but not make the facility accessible.)

Seeking Olympic Sponsors

Pictured right, Australia and Canada playing a wheelchair rugby game

Ronnie loves playing so many different sports - basketball, softball, rugby, track and field - and every sport needs a different type of wheelchair. Throw in a 'street' chair for everyday use, and I would have to build a new wing on our home just to hold all the chairs.

I have been known to grumble a bit about that. I always wondered if the chairs were really all that different. Couldn't accessories just be added to a basic sports chair to make it work for all sports? The answer is, of course, no, but I never really understood the design implications as to why the answer was no.

Then I found this video called Engineering for Mobility, and it all became clear. We still can't buy a different chair for each sport Ronnie wants to play, but we all know now why a specific chair would be a real plus. Maybe when Ronnie goes to the Olympics he can find a sponsor to buy all his chairs!

Special Exposure Wednesday

You know how when you kids stay in the pool all day, especially boys, and then when they get out they never comb or brush their hair, and little swirls form on the tops of their heads. Well, the same thing happens to Cooper after he spends the day swimming at doggie daycare! (I'm sure our neighbors think we are very strange for wrestling the dog while trying to get a picture of his butt!)

Hackles

I know that I have written several times in the past about how annoyed I get when people stare at my children. I’m not going to do that today, and in fact, am trying to wrap my mind around a new thought pattern for the stares based on this post by Diary of a Mom. But, I am going to write about the comments that are sometimes made about my children – mostly because I find them incredibly insensitive and rude.

I don’t mind comments or questions from children. In fact, I welcome the opportunity to help them see that my children are not so different from other children. It’s the comments of adults that often make the hair stand up on the back of my neck.

The comments run the gamut from:
• What’s wrong with her?
• Why won’t she just walk?
• Why does he make those funny noises?
• His legs look strange.
• Her hair would look so much better if you let it grow out.
• How did she mess up her eye?
To:
• Why in the world would you want to adopt a kid like that?
• Do you run a group home?
• What’s he going to do when you aren’t around anymore?
• She doesn’t have much of a future, does she?
And my all time favorite:
• She goes to a real school?

How would these people like it if I asked rude questions about their family member? I bet their hackles would rise even more than mine do. What I don’t know is how to react to the questions and comments. Should I choose the high road as described by Diary of a Mom, or are comments even less acceptable than the stares.

What do you think? And what do you do when someone makes a rude or insensitive comment about your child?

Brilliant!

The following is reprinted from New Mobility Magazine. This is such a simple yet brilliant idea...

"Pretty sure she's Swedish, or maybe she's Norwegian, but that's not important. What is important is what Cindy Sjoblom created for her university project: A stroller made for parents who use wheelchairs.


Called the "Cursum," the stroller Cindy designed is specifically made for parents in wheelchairs, and it has dozens of design features that are oh-so helpful. Listen up, if you have a child under 3 and can't walk, you should be *very* excited right now.


It's hard to believe, but no one has created a stroller like this yet. I've been waiting for it (even though I have no desire to be a parent myself). I've always thought it was something that was terribly needed for parents with mobility disabilities.


I should preface this entire complimentary blog entry however by saying that it is not yet available for purchase. I expect the Cursom will be eventually, or someone out there will copy the design and sell it themselves. It WILL be available at some point — of that I am sure. Cindy created a video profiling her stroller and the creation process. You can check it out on Vimeo here.


To give you a basic rundown, the stroller is essentially different because of the noticeable height difference in this design. Instead of a stroller being too low, this one is at the perfect height for someone sitting in a wheelchair. And then the stroller also has smaller wheels, and an overall smaller wheelbase, that makes it perfect to snuggle right in the front of your wheelchair.


But it does more than snuggle. It actually locks to the front of your wheelchair so you can make sure you have a definite "grip," which you know, is kind of important when you have a baby. There is also a cute storage space underneath the seat (at about knee height; perfect).


It also has a perfectly placed handle-bar for pushing, buttons to adjust the handle, buttons to adjust the height of the seat, buttons to adjust the stroller to the wheelchair and a button to fold it too. She's thought of everything pretty much.


There are some places however that I don't think I would take it, since it IS attached your wheelchair, like through a glass door turnstile, or in a crowd of people. But in the video, they show some crazy maneuvering with the stroller.


They say parenting in Europe is a bit more "guerilla-style" (less "safety;" more "just do it already"). From this video, it seems that parents in wheelchairs still adopt this same mindset. That makes my soul smile.


Those northern Euros (Ikea)...why and how do you design so well? Is it in your blood? Is it something with the cold weather? (like a brain freeze, but in a good way?)"


Here is a video that shows Cindy's design!

Challenge Your Assumptions

This video is not about cute kittens or dogs doing extraordinary tricks. It's not about a child coming out from the effects of anesthesia, and it's not a series of pictures of a baby growing up. But it NEEDS to go viral. What do you say? Will you help make that happen?

No no no....

I could write a 10 page post about this, but I won't. I'm sure most of you have already seen many references to the story, witnessed much shaking of heads, seen the wheels turning in people's brains trying to understand how this could happen. I have no answers. I am sad beyond words - I am angry - I want to bring this young woman home with me. There is absolutely no way I can comprehend this happening...

Mom leaves disabled daughter at bar

Just pray that no other parent will see this story, reading that there will be no consequences for that mother and view this as an option. I don't want to read another story like this - ever.

Special Exposure Wednesday

Last weekend it was 110 degrees in the shade around here. People were being advised to stay inside. But, we were going a little stir crazy and decided to visit the mall. Look what we found in one of the stores - Christmas Trees - on July 8th - in all the gaudy colors Ashley loves! I'm just hoping she doesn't expect to find presents this coming weekend...

For The Umpteenth Time

Ashley can't hear you - she's deaf.

No, she can't really see you either - she's blind.

Yes, she always carries that star garland with her on the bus. She has since the 3rd grade. No, she won't put her eye out with it.

No one mentioned that she has seizures? Well, she does, and is quite likely to have them during the bus ride.

Yes, she will hit her head sometimes, usually when she is trying to communicate with you and you are ignoring her.

Yes, she uses sign language but you don't need to worry. She has other techniques to communicate once she realizes you don't know sign language. Just pay close attention and you will see.

She gets overheated very easily because of one of her medications. Since your bus is not air conditioned and it is Summer, please allow her to have a bottle of water and keep her window open. I know you have rules but do you also know basic first head for heat related issues?

Ashley asked me why she can't sit next to another student on the bus? I told her that you said there were rules. Yep, neither she nor I understand that stupid rule.

And on and on and on it goes - everytime there is a new bus driver and aide - which is about 5 times a year. Why is information from Ashley's school file not shared with everyone on her school team - bus drivers and aides included? I've even written a one page information sheet that I have handed out. It doesn't seem like anyone reads it, and they definitely don't pass it on to any substitute or new drivers.

This just doesn't seem like rocket science to me...

A TV Solution

Even though Ashley is considered blind, she had a little bit of vision in her right eye. She can focus at about 2 inches. But, even given that, she LOVES to watch television. Her favorite shows are sports, especially basketball, and any show that has babies. She also likes watching the weather during the morning and evening news.

Because of her vision, she must sit directly in front of the television with her good eye just inches away from the screen. We currently have a big old clunker of a tube TV and that has served her well. She can't pull it over by trying to get closer, and even if she is a little rough with it, it's very solid and has taken her abuse for the last 13 years. But we may be coming to the end of that old TV's life.

Now I don't know what to do. Tube TVs aren't sold anymore. Flat screens are all that exist, but flat screens are way more fragile. She could easily pull one over, or damage it. So where do we go from here?

I've thought about trying to find a hutch type cabinet for a flat screen and then somehow rigging up a piece of plexiglass in front of the TV so she can't actually get to the flat screen. But, most hutch type cabinets have the TV up pretty high. Our current TV sits on a stand and Ashley pulls an ottoman up in front which gives her full access to the entire screen. Sitting up higher is not a good option for her since a seizure could have her falling farther to the floor.

So I need advice. What can I do to provide a safe TV watching experience for her?

BTDTGTS

(BTDTGTS = been there, done that, got the t-shirt)

Ashley starts ESY services on Monday. Six weeks of going to school for 1/2 day, 4 days a week. Six weeks of sweltering rides on an un-airconditioned bus. Six weeks that are supposed to keep her from regressing but actually do little more than *teach* her to make tie dyed t-shirts and play in water.

I fought so hard to make sure Ashley had ESY services, and I do think it is a nice change of pace for her from the summer slug time she has had at home for the last three weeks. But I do wish more real academics could be presented to ESY students.

We will also have the same battles we have every summer. Ashley will have to adjust to at least 2 different bus drivers and 2 different bus aides, and there may be more than that. For some unknown reason, ESY services are broken into two sessions - a 4 week session followed by a 2 week session. And there is different bus staff for each. If we're really lucky, she will have a different driver and aide for the morning and the afternoon, upping the number of people to a potential of 8.

The ESY teacher is someone Ashley has never met, and I'm betting has no idea how to teach a child with deafblindness, or deal with Ashley's unique seizure activity, or even how to communicate with Ashley. There will be an aide assigned to Ashley, and it is someone that works at Ashley's regular school - but it is someone who doesn't sign fluently.

There there is the aide she had for several years in middle school who does sign and who will also be working summer school. That might sound like a good thing, but Ashley and that person had a breakup on a professional level at the beginning of last summer, and continued contact (at least on Ashley's part and definitely on my part) will be most unwelcome.

But Ashley can be very 'go with the flow' and will probably be excited about a change in routine. And right after ESY is over, we will be going on a fun family vacation.

So, I will continue to homeschool and keep my fingers crossed that she doesn't catch any illnesses at summer school. I just really wish that ESY could be as it was truly meant to be...

No Vacation Here

I saw a story on TV yesterday morning about Cumberland Island off the coast of Georgia. Also known informally as Carnegie Island due to the fact that the Carnegie family owns a good portion of the island and has several mansions there, Cumberland Island is a barrier island facing the Atlantic Ocean.

The only way to get to the island is by ferry or private watercraft. And once there, you will find no cars or other motor vehicles, just bicycles and people walking. And from the pictures on TV, it appears as if none of the roads or paths are paved.



It appears to be a beautiful, serene and interesting place - exactly the kind of place I would love to vacation with my children. But we probably can't. Island which allow no vehicles and have no paved roads are not very wheelchair friendly. It's a shame because I would truly love to visit.

Whenever we plan a trip or vacation, ensuring everything is wheelchair accessible is at the top of my list. Also on the list are things like proximity to hospitals and doctors, pharmacies, and appropriate transportation.

We've been able to find places to vacation, but we've also found places that we can't go, places I really wish my children could see.

What about you - do you know of vacation locations that are disability friendly - places where children with complex medical needs are welcomed - towns or resorts that have truly committed to access for all?

This summer we are planning a trip to Hershey PA. I'm sure the Hershey Park will be accessible, but I would also love to visit the Amish Country. I don't know what to expect there, but am thinking it might not be too accessible. Have you visited there and found it to be accessible and welcoming?

Special Exposure Wednesday

It's hot - It's humid - It's the Fourth of July!! And there's always time for little basketball before the cookout! Happy Fourth of July, everyone!

Are You Ready?

We've had quite the week, but it was no where near as difficult as others in our state had.

It started last Monday with something called a derecho. I had to look it up, but apparently it means a really bad storm with exceptionally bad winds - pretty much a tornado's first cousin. That storm traveled in a straight path down the highway that is behind our house. We experienced downed trees and power outages, but our power company was pretty fast to respond. Amazingly our power was only out for about 8 hours, but for others it was a couple of days.

Then just as things were starting to get back to a normal, sweltering summer, two more storms hit. Again they were called derechos, but this time they brought their cousin, the tornado. By Sunday morning, our power company had said this was the worst non-hurricane event our state had ever seen with 1 million people without power. Our governor declared a state of emergency, and the heat began to soar over 100 degrees.

God's hand must have been covering my house because through it all we never lost power. The worst event for my state short of a hurricane - 1 million without power - and we who lose power if a squirrel sneezes - were fine. The weather guys called it a derecho again, but I called it a miracle.

What all this highlighted for me was the importance of a family disaster plan. I've addressed this several times in the past, usually right after a disaster hits. And here I go again, but this time I am determined to get our plan worked out BEFORE the next disaster.

How about you and your family? What are your plans in the event a disaster - wildfires, hurricanes, tornados, floods, derechos - hits and you must leave your home? Below are some links and a video I found to help me refine my plan. Maybe you will find them useful also.

Red Cross, Disaster Preparedness for People with Disabilities

FEMA, Planning and Preparedness for People with Special Needs

Disability.Gov - Emergency Preparedness

Kidney Health

Sometimes you can do everything right, and things still don't go the way you want.

Ronnie visited his nephrologist last week, and the blood work numbers weren't good. His creatine level, what I understand to be a measure of kidney function, has been slowly creeping up. As of last week, the numbers were double what they should be. The doctor said that despite the bladder augmentation surgery Ronnie endured two years ago, his kidneys, especially his right kidney, are not doing well.

Ronnie follows a very strict diet. He takes hands full of medicine three times a day. He cathes on a schedule set by his doctors. Yet still, his kidneys are not responding.

If Ronnie's birth parent had heeded the call of the medical professionals rather than the call of her pusher, or if Ronnie's foster parents had followed through with his medical care, he would not be facing these kidney issues now. But none of that happened.

It is what it is. We will do whatever is required to maintain Ronnie's kidney health as long as we can, and then we will get him on the kidney donor list. I haven't heard good things about that list, and that folks can wait many, many years on it, but we will deal with that also when we need to.

Ronnie has a bright future ahead and really doesn't need this...