Monday, November 28, 2011
Yesterday my pastor was giving a message in church that made me think about my beautiful angel, and her purpose here on earth. For those who are new to Angelman Syndrome, it is important to know that the children with this disorder are always referred to as angels. Of course, this seems appropriate, since our angels are always so happy and loving. I believe, however, that when we look at the meaning of the word "angel," we discover something more significant.
Angel in both Hebrew and Greek means messenger. I began to think of the many ways my daughter, Noel, is a messenger.
1. When Noel grabs the hand of a toothless man who obviously hasn't bathed in two weeks and smiles right at him, she brings the message that we are all deserving of love.
2. When Noel plays in her toy room without any lights on in the house, she brings the message that we do not need to be afraid.
3. When Noel stops crying two seconds after being hurt, she brings the message that we don't need to dwell on the bad things. Just pick ourselves us, dust ourselves off, and move on to the next thing.
4. When Noel spends six hours straight learning how to unzip a zipper without taking a break, she brings the message that sometimes it takes hard work and determination to achieve a goal.
5. When another child takes a toy right out of Noel's hand, she laughs and moves on to another toy, bringing the message of forgiveness, and dwelling on what really is important (not silly material objects).
6. Best of all, when you are feeling down in the dumps, Noel gives you a smile with a sparkle in her eye that instantly lifts your spirits despite it all. She is bringing the message you can find joy in every situation.
Noel has done all of the things mentioned above. Noel has brought me so many messages over the years. I appreciate the Father trusting me enough to be her mama. What a beautiful angel! What a beautiful messenger!
Friday, September 2, 2011
Noel has a history of coming down with strange illnesses. This summer has proved no different.
The problem started when I began to notice a skunk-like odor within my house. At first I blamed the newly purchased guinea pigs. It wasn't long before I discovered the unpleasant scent was coming from the urine in my daughter's diapers. Over the period of two weeks, the smell got so bad that one diaper thrown in the kitchen trash would stink up the whole house.
To the doctors we went. I am positive that if they didn't know us so well, they would have thought I was crazy. Noel had no symptoms of any illness. Getting a urine sample is the only way to find out what is going on, but that is not an easy task. Noel can't pee in a cup.
We were sent to the hospital so Noel could be catheterized as an outpatient. Outpatient said "We don't just catheterized people for no reason." UMMMM? I did have a reason. They said I could collect the urine in a bag and proceeded to call up to the lab. Guess what? The hospital lab was out of bags. How does that happen?
To make a long story short, we had to go through the hospital's ER. The doctor in the ER said there was a trace of something, but it wasn't a big deal. This took 4 hours. The next day, the hospital called and said the culture showed the growth of bacteria. The frantic nurse went on to say that I needed to go to the pharmacy and get an antibiotic ASAP. It was late afternoon, so I got the antibiotic and called her pediatrician the next morning to find out exactly what was going on.
The pediatrician called back after receiving Noel's lab work. He informed me that she had a rare bacteria called providencia, which he had to look up because he had never heard of it. Apparently, it is found mostly in burn patients. On top of this news, the doctor said the antibiotic the hospital prescribed is resistant to this bacteria. I had to go back to the pharmacy to get another antibiotic.
I am happy to report that Noel no longer smells me out of the house with her skunk-like diapers. They have returned to normal. Just praying she stays healthy and doesn't continue this pattern of strange illnesses.
Sunday, July 3, 2011
The Foundation for Angelman Syndrome Therapeutics, or FAST for short, is an organization in pursuit of finding a cure for Angelman Syndrome. This is the syndrome that my daughter, Noel, has. Many angels suffer from debilitating seizures, which in some cases has led to death. Angels don't talk, have global developmental delay, any many other challenges which they must face on a daily basis.
A scientist in Florida has made significant progress in reversing Angelman Syndrome in mice. Funding is needed to continue his research. Vivint is currently giving away $1.25 million dollars to such charities as FAST. By voting once each day, you can provide the necessary funding needed to find a cure for my little Noel.
All that you have to do is head to Vivint by clicking HERE! Then "Like" Vivint on Facebook so that you can click "Vote" at the bottom of the page. FAST is currently in the number 1 spot, but it won't stay there without your help.
Thank you in advance for your help!
Thursday, May 26, 2011
Ever since Noel began school at the tiny age of three, I have had to deal with impatient drivers. Living on a highway magnifies the issue.
Picture the cutest 3-year-old you ever saw in a wheelchair device being lifted on to a school bus because she hasn't learned how to walk up stairs yet. Heck, she had only mastered walking 2 or 3 months before. Now picture an impatient driver honking his horn because he has to wait an extra 30 seconds to get where he is going.
Fast forward six years. Now picture a cute-as-a-button 9-year-old getting on the school bus wearing braces on her legs. She is down to only taking an additional 10 seconds of the drivers time, as she can slowly make her way up the steps. Some mornings this is achieved better than others. Again, picture honking drivers who feel getting to their destination is more important than a handicap child getting to school safe and sound.
I would have thought I'd be use to this type of daily treatment after six years, but I am not. My daughter is blessed not to understand that these people are behaving in such a shameful fashion. They are not content to gripe in their cars silently, they feel the need to lash out on their horn. Seriously, what do they think they will accomplish by doing this day after day?
Sadly, I see no way to stop this from happening. Most of the time I don't even know which car is honking, so I can't walk up to them afterward and show them what a sweet little girl Noel is. Although, one time Noel's old bus driver got out of the bus and had a few words with one of the cars. I'm not interested in having words, but rather educate these individuals so they no longer remain ignorant, or cold-hearted.