Epidermolysis Bullosa (EB)

EB (Epidermolysis Bullosa ) is a rare genetic skin disease that causes the skin to be so fragile that the slightest friction can cause severe blistering—inside and outside the body. Today there is no cure. Severe forms of EB cause patients to live with constant pain and scarring. The worst forms of EB lead to eventual disfigurement, disability and often early death. There are many patients who are diagnosed with milder forms, which, while they can be extremely difficult to live with, are non-disfiguring and non-lethal.

The only treatment for EB is daily wound care and bandaging. The daily routine is a grueling, multi-faceted daily regimen. Caregivers, often parents or family members of EB children, must work in tandem with medical professionals to determine and administer different treatment methods to care for EB wounds.

With skin as fragile as a butterfly wing, EB patients are dubbed “Butterfly Children”. On the outside physical wounds prevent them from normal daily activities enjoyed by other children. On the inside, their dreams are the same as any child who loves, plays, learns and grows despite the pain and impediment caused by their disease. With the programs and services of Debra of America, EB’s Butterfly Children and their families find the support they so desperately need. Debra of America works to ensure that a life of struggle is also a life of hope for the 1 out of every 50,000 live births in the United States affected by EB.

The above description of this horrible disease came from www.debra.org. 

A wonderful organization

I first stumbled upon this disease through a Facebook page of another mommy.  I followed the story of one little boy, Tripp, who, as all children with EB, was born with this terrible disease.  Tripp passed away about a month ago but I have since created a FB page dedicated to EB.  The page is Helping Children with EB.  Currenty, there is NO CURE for the disease and all the children who suffer have to go through extreme pain every single day.  It breaks my heart to see every single video of these children.  They are such sweet angels who do not deserve the pain and suffering they are going through.  Yet, they seem to have more strength in them and patience that many adults I know, including myself. 

If you’d like please visit   http://randycourtneytripproth.blogspot.com/ for more information on Tripp’s story.  It is a truly amazing story of a Mom who dedicated herself to her son. 

Tripp Roth

Please let me know if you have ever come in touch with this disease.  I would like to begin to raise fund for the research and treatment for those children.  You can also leave me a comment and I will post additional sites that are dedicated to this disease.

         

       

Every child a miracle

This morning I watched adoption stories. A family adopted a child from Haiti. The 1 hour special showed al the details of the adoption process, the family’s background and the child’s story.  What got me was the bittersweet goodbye between the little boy’s sister who was staying behind in Haiti and the boy himself. It seemed like the 3 year old didn’t understand very much, which is understandable. One may say, kids are resilient, they get over anything. But do they really? If people really believe this, does it mean that all the extra care, love and attention we give to our little ones is insignificant?

 

         I believe that the more love, care, attention, hugs, smooches, laughs that a child receives, the better it is for him.  

What are your thoughts?

Creating a Schedule

             If you are anything like me, you will understand that by the end of each day I feel exhausted, frustrated and usually unaccomplished. I wake up in the morning with my head spinning trying to create mental organizers and schedules that will set my day in motion. I promise myself that TODAY is the day I will not procrastinate, get side tracked, or hijacked my FB, email, TV or clutter and will cross off a bunch of things of my morning’s To Do List.  Sound familiar?  Yeah. Me too.

              This week, I've decided to do things a bit differently and I hope to stick to it.

My plan:  Stick to my schedule. "But wait!" you say.  Isn’t that what you’ve been trying to do all along? Yes. I know. But here’s what I’m doing differently and I hope it works.

Yesterday morning, as it just happened to be Monday, I wrote:

 I WILL STICK TO MY OWN SCHEDULE THIS WEEK. 

               I had a million things that should have been done but were not so wrote down three with hopes that by the end of Monday, I will finish one task.  Guess what? I did! As I went through the day, I found myself thinking about that thing only, finding bits and pieces of time to complete just a little bit at a time, saying to other people’s requests just so I can stick to my schedule.  I was done by 2 in the afternoon.  This is mind you, a task that would normally take me at least a couple days, mainly because I would be doing 3 other things simultaneously. 
Here’s what I learned:

• Have a goal – and I mean 1 goal. We already know that over planning our life doesn’t work. That’s why we don’t get it all done. Whether it is to clean a house, go for a run, or make a call. Set a goal and concentrate on that one goal.
• Break it up into smaller tasks – For me, setting a schedule was the goal.  My goal was to stick to my schedule. My schedule includes paperwork, meetings, and calls.  I write out the three most important and concentrate on the 1^st one.  I don’t touch anything else until I am done with the first.  If you can manage moving on to the 2^nd for a few minutes sure, do it, but don’t overwhelm yourself.  You’ll be back to where you were.
• Cross it off your list – Doesn’t it feel wonderful to cross of a completed task off your to do list?  I always feel accomplished. Enough said.
• Do not add tasks to your already existing list – since we decided to keep our lists small, they are meant to remain small.  Complete your list, and then start a new one.  Adding to your list will only add anxiety to your already hectic, stressed life. You’re trying to gain control of it, not lose it.
• Add only when your list is complete – if you set daily goals, you created the list hoping that you would have enough time in a day to get it all done.  Tomorrow morning you can create a new list and concentrate on those tasks only.  If you need to get 10 things done this week and by Monday 3 things are already done, you have only 7 more to go.  That’s 6 more days for 7 tasks. That’s 1 day a task, just about.  Is it doable? Of course! Ask yourself: What will happen if the other 5 things don’t get done this week? If your answer is: NOTHING, then keep working at things that are the priority. But remember, don’t add.
• Be proud of yourself -   You know those people who always seem to be on top of things?  Well, so are you. You are on top of your list, your life, your schedule. You set a goal, you created tasks, and you completed the tasks. You’re that person! 
• Reward yourself – After a long day of completing tasks and sticking to your schedule, reward yourself. Allow yourself some quiet time, a walk, a talk with a friend, a book, TV.  As you are doing this, think about WHY you were able to do this. Think about the fact that you “gave” yourself this free time (whether it’s an hour, a half hour, or 15 minutes) because you worked hard all day.  You deserve it!

              I have new tasks for today. I did not complete my list from yesterday but I also didn’t add anything to it.  I wrote down only what’s most important and everything else can wait.

What did you do this week? J

First Blog

So I've thought about creating my own blog for a while now. I guess I didn't have the courage to start. Until now. I'm not sure how this will turn out, or what I will focus on in this blog. Right now, it will be a collection of my thoughts.  I learn by doing so until I figure out exactly how this blog thing works as I research other blogs and learn new things, this will probably be a mess. I am in no way a perfectionist so please do not expect it to be perfect. If you'd like to comment on my posts, please do so but know that I have a long way to go.
Thanks for reading.