Tell it like it is Bill!!

A must see!!

This is for parents of disabled children...If you understand and believe in the law of attraction, this is a MUST see. I always thought Nicky was something special, different... everyone that meets him and gets to spend time with him, they always come back to me to tell me he's something else. Now I know why! Thank you Abraham!

Dear Santa*,

I've been a good mom all year. I've fed, cleaned and cuddled my children on demand, visited the doctor's office more than my doctor and sold sixty-two cases of candy bars to raise money to plant a shade tree on the school playground. I was hoping you could spread my list out over several Christmases, since I had to write this letter with my son's red crayon, on the back of a receipt in the laundry room between cycles, and who knows when I'll find anymore free time in the next 18 years.

Here are my Christmas wishes:

I'd like a pair of legs that don't ache (in any color, except purple, which I already have) and arms that don't hurt or flap in the breeze, but are strong enough to pull my screaming child out of the candy aisle in the grocery store.

I'd also like a waist, since I lost mine somewhere in the seventh month of my last pregnancy.

If you're hauling big ticket items this year I'd like fingerprint resistant windows
and a radio that only plays adult music, a television that doesn't broadcast any programs containing talking animals, and a refrigerator with a secret compartment behind the crisper where I can hide to talk on the phone.

On the practical side, I could use a talking doll that says, "Yes, Mommy" to boost my parental confidence, along with two kids who don't fight and three pairs of jeans that will zip all the way up without the use of power tools.

I could also use a recording of Tibetan monks chanting "Don't eat in the living room" and "Take your hands off your brother," because my voice seems to be just out of my children's hearing range and can only be heard by the dog.

If it's too late to find any of these products, I'd settle for enough time to brush my teeth and comb my hair in the same morning, or the luxury of eating food warmer than room temperature without it being served in a Styrofoam container.

If you don't mind, I could also use a few Christmas miracles to brighten the holiday season.

Would it be too much trouble to declare ketchup a vegetable? It will clear my
conscience immensely. It would be helpful if you could coerce my children to help around the house without demanding payment as if they were the bosses of an organized crime family.

Well, Santa, the buzzer on the dryer is calling and my son saw my feet under the laundry room door. I think he wants his crayon back. Have a safe trip and remember to leave your wet boots by the door and come in and dry off so you don't catch a cold.

Help yourself to cookies on the table but don't eat too many or leave crumbs on the carpet.

Yours Always,

MOM...

PS. One more thing...you can cancel all my requests if you can keep my children young enough to believe in Santa.

It's the first official EB Awareness week and EB Patients need your help! We had over 4000 people that signed our petition for the Wound Care Bill, now we need your help in writing to legislators and find sponsors for this Bill.

The Wound Care Bill is vital and extremely important to EB families nationwide. It is medically necessary for people with many forms of Epidermolysis Bullosa to bandage wounds and protect healthy skin from harm. Most of the time, these expenditures are not covered by insurance of any kind, and the outlay for one household can range up to 5,000 a month just for wound care supplies! Every American should be able to participate in impartial health care coverage, regardless of their disease. The public and our legislators must understand the impact of this disease on EB patients and their families, and the inequity that subsists in today's health care system. The Wound Care Bill mandates insurance companies to provide coverage on all bandage and wound related products needed by those that suffer from Epidermolysis Bullosa.

Write your Representative and your Senators, urging them to sponsor the bill!

You may find your representative here:

http://www.house.gov/writerep/

You may find your senator here:

http://www.senate.gov/general/contact_information/senators_cfm.cfm

You may find your governor here:

http://www.usa.gov/Contact/Governors.shtml

You may use the SAMPLE LETTER available HERE:
http://ebanusa.org/sponsor_letter.doc

And here's a copy of the WOUND CARE BILL you may send along with it:
http://ebanusa.org/Wound%20Care%20Bill.doc

If you are living in the following States, we have SPECIAL instructions for you! Please write us back and let us know which of these states you live in so we can give you the name of the Representative or Senator that has helped the EB community before and knows how devastating EB is!

States: California, Colorado, Connecticut, Florida, Georgia, Illinois, Massachusetts, Maryland, Michigan, Minnesota, Missouri, Mississippi, North Carolina, North Dakota, New Hampshire, New Jersey, Nevada, New York, Ohio, Pennsylvania, Rhode Island, South Dakota, Texas, Utah, Virginia, Washington, Wisconsin, West Virginia.

Other ways you can help?

1. Ask your friends and family to sign the Petition in support of the Wound Care Bill and to help spread the word.

http://www.gopetition.com/sign.php?currentregion=238&petid=7998

2. Contact your local newspaper, and your local TV and radio stations.

Two online sources for finding contact info for your local newspaper, radio or tv news media are:

Kidon Media-Link

http://www.kidon.com/media-link/usa.shtml

and Zap2it | TV: Nets/Stations

http://tv.zap2it.com/tveditorial/tve_main/1,1002,585%7C%7C%7C,00.html

Write letters to the editors or take out an ad.  Direct readers to this website, <http://ebanusa.org/petition.htm>, for more information.

Do you have any ideas? Are you involved in local efforts to promote this cause? Please contact us to let us know what you are doing, or what ideas you may have to help further this cause.

Sincerely,

Silvia Corradin and everyone at EBAN

http://www.ebanusa.org

Oh boy... I am a proud momma today! Not only Nicky graduated from Elementary School, he finished the school year with the 'Superintendent Honor Roll', which means he got Straight As! Way to go Nicky!!! Whoo-hoo!!!

Everyone that knows me knows Health Care is MY persoal HOT BUTTON issue and that's the reason I support Hilary Clinton. However, I will whole heartedly support any presidential candidate who will take this issue to heart.

Why is Health Care a HOT BUTTON issue with me? Because of my son. Everything is fine and dandy if you're healthy, but my son is not. HMOs have repeatedly REFUSED to pay for Nicky's ONLY treatment-the care of his wounds from becoming infected and killing him. The insurance has never paid for any wound-care related product my son so desperately needs. The insurance will also NOT COVER me taking my son to the EB specialists because they are 'out-of-network'. The insurance has never covered any nurse to come and help my son in case I could not change his bandages and... yes, I could go on. I was repeatedly told at CHLA that if I was poor and qualified for medicare like the illegal immigrants, my son could get EVERYTHING he needs. Isn't there something wrong with this picture?

Check Michael Moore on Oprah below and SUPPORT "SICKO"!!!!

Oh gosh... hard to believe. Back in 1982, when I was 18 years old, I was completely GAGA (and GAGA does not even explain how GAGA I really was!) over a silly TV show called... CHiPs. Ponch girl all the way Baby!!! It was back then that VCRs had just started coming out, my aunt and uncle (who I was living with at the time) wouldn't get their first VCR until a year later, and I would not get my first VCR until Christmas 1985, but I remember writing in my diary something to this effect:"Woudln't be cool if I could get all the episodes of CHiPs on a tape so I could watch them anytime I want to?". Well, CHiPs was never released on VCR tapes (much to my dismay) BUT... YES... The DVD for the first season came out TODAY... 25 years later!!!

Good things come to those who wait? INDEED!! My DVD player will be burning by day's end!!! WHOOO_HOOOOOO!!!!

Last week I had to rush home from work because Nicky's g-tube came loose and needed to be changed ASAP (within half an hour the hole can start to close!) ... the weird thing is that I am not sure I had told anyone of my bosses about Nicky before (we're always busy doing our own thing, no time to chat), so now, today, a couple of them came over to ask me how Nicky was doing.

How is Nicky doing? That is a tough question for me to answer. I am not sure I can ever put to words my pride, my frustrations, my sadness, my special joys. I absolutely dread this question, especially from people who never saw Nicky or don't really know what EB is. Even some of my closest friends were literally SHOCKED to see Nicky's clinical (wound) pictures over the years and they apologized to me for not really understanding before. I don't think anyone can truly understand what a mother goes through (not to mention the patient) who has never witnessed a bandage change.

Does anyone want to know what my "real" answer is?

The truth is... I am scared to death. His health problems seem unsurmountable at times. Just in the next few months he will have a blood transfusion (or multiple), a hand surgery, a throat dilatation, a dental cleaning and evaluation (a big deal-so big they will have to put him under), possibly a surgery for bowel cleaning... and that is in the middle of trying to get some stubborn wounds to heal, bandage change after bandage change after bandage change. I literally see my child deteriorate before my eyes and I see no light at the end of this tunnel.

The truth is... I am giddy just to be able to make him smile. Nicky is into videogames and movies, so anything he wants, his daddy usually gets, the rest I try my hardest to find... anything to get a smile on that face.

The truth is... I am frustrated. My 3 year old can do things Nicky, at 10.5, will never be able to do. Heck, Connor was doing things when he was 1 that Nicky can't do. I see Connor growing, evolving, able to do more and more for himself, while Nicky... Nicky can't get dressed on his own, can't get his own milk, he's still in diapers... I have to do everything for him and I don't see things change anytime soon or ever. Will I still need to dress him and change his diaper when he's 20? Most likely. It seems so unfair to him... he's so bright. Will he live to see a cure? Sometimes, at night, that's the only thing that keeps me going. 

The truth is... I am proud of his great grades at school. Nicky has proven to be exceptionally bright. Heck, he can do math I can't even begin to understand... I am so proud how all the teachers he's ever had just LOOOOVE him, and his Aides are head over hills about him. Even the bus drivers have to comment on how a comedian he is... truly, as a mom, I am so proud!

The sadness, however, lingers. How is Nicky doing? My answer is always the same, except maybe, my face and tone, which really depends on the day and the mood. If Nicky has been throwing up a lot lately and his wounds are really nasty... I will sigh and say 'he's hanging in there'. If his wounds are taking a turn for the better and his teacher called me telling me how great he's doing at school, then I will say 'he's hanging in there'. I can't ever really say 'good', and I am sorry, but that is simply the truth. That does not take away my love for him, he's truly my angel on earth... the pain he goes through... I will never really understand.

...yes, that's what hubby told me yesterday.

I came home from work at 1:30pm yesterday and the boys were screaming at each other, crying. The little one hadn't been fed and hubby was grumpy... I wanted to make a U-turn and go back to work! Geez. After I got the boys to get along, fed the little one, hubby left for work and started the laundry, I started doing some of my computer work and then I gave Nicky a bath/bandage change while I was listening to a webinar on the phone. I was so tired I had a hard time keeping my eyes open. I then got a call from hubby-he was sorry he was so grumpy he said to me, the boys were a nightmare. You're telling me!  The night before I had a screaming match with them to just to get them to stop screaming at each other and I had to separate them. Hubby told me he felt better now, and that he likes to be able to go to work to 'relax'! I only work 5-15 hours a week, so I guess I don't get to relax much, heh? I am constantly trying to do all my work at home while taking care of the boys, that's probably why I am a wreck most of the time.

Now... everyone with kids can probably relate. I told Nicky yesterday... how much of a milder mom I will be when Connor starts kindergarten/first grade and Nicky is in school... if I get some 'peace and quiet' to actually do what I need to do without constantly having to get someone a drink or asking someone to be quiet... I am looking forward to a more peaceful and quiet self. She cannot come soon enough!!!