Tuesday, April 12, 2011
If Life Gives You NF, Make Lemonade
You all have herd to quote, “If life gives you lemons, make lemonade.” My five year old son Luke took this quote, which I don’t believe he has even herd before, to a whole different level. If you have read my posts in the past you know that Luke and I suffer from a disorder called Neurofibromatosis or “NF” for short. NF can cause tumors to grow uncontrollably along your nerves, which can cause a variety of complications. These can range from learning disorders, scoliosis, blindness, deafness, bone and tissue disfigurement and different types of cancer, and that is just the tip of the ice berg. The past few years our family has tried to become more involved with the foundation to try and raise awareness and money for NF. My husband ran the Houston Marathon and I have worked on a committee for a fundraiser; both benefiting NF. We must have instilled this into our two boys because when it came time to run their first lemonade stand, without a blink of an eye Luke wanted his money to be sent to NF.
I am happy to report that their little lemonade stand was very successful. Making $53 dollars, which is more than any lemonade stand I ever had. Yesterday we went to the bank and got the cashier’s check made and then got some pictures printed as well. He is sending off the money today. It never crossed his mind to keep it. When I asked him how much he wanted to donate, he said, “All of it, they need it more than I do!” My heart skipped a beat, and yes, I wiped a tear from my eye, wouldn’t you? His generous efforts did not go unnoticed and I did buy him a special prize for all the hard work.
He taught so many people about NF, and his knowledge was very accurate. Luke was able to answer many questions, I was quite impressed. He was able to tell his costumers how NF has affected him and his mommy, and he handed out brochures to people who wanted to learn more. I think he would be a great spokesperson for the disorder, if I do say so myself. In fact he is having another stand this weekend at my parent’s garage sale. Maybe this little boy will start a trend or campaign to raise money for NF, wouldn’t that be wonderful? What a great accomplishment it would be for a five year old, and to think he thought it all up on his own; with no help from mom and dad. It would be something if one day you were driving down the road and you saw a billboard that read,
“If Life Gives You NF, Make Lemonade!”
or my blog page about NF at http://www.mudpiesformommy.com/p/nf.html
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April 7, 2011
Big Heart, Tiny BodyMy son Luke has wanted to have his own lemonade stand since he was three. Our neighborhood is not exactly a high traffic area, which is why we live here. Therefore, the best time to have a lemonade stand is during a garage sale. Too bad for him we are only allowed to have garage sales on the designated date that is chosen by our homeowners association. Which is really annoying because every year we have lived here the garage sale has managed to be a date where there is no possible way we could participate. Do any of you live in neighborhoods such as this? Expect this year! So finally after seven years we can have our garage sale and Luke gets his much anticipated lemonade stand.
Getting ready for a garage sale is a lot more work that I bargained for. Not that I mind hard work, that is not the case, but I had no idea. Then there is the fact that my house is now filled with all the stuff from the past seven years that I no longer want, which is why I stuffed it in the attic in the first place. The attic; the dreaded attic; climbing around up there must have been a sight. On more than one occasion my legs almost fell through the ceiling, just as Chevy Chase’s character did on Christmas Vacation. Explaining that one to my husband would have been fun. But for now at least our ceiling is intact, stay tuned though; I am going back up there today. All this stuff is driving me crazy, I am a clutter free type of girl, and it is taking all of patience and energy to not take all this stuff away and donate it right now. It’s all here, sitting in my house staring and taunting at me. I just have to be strong for a few more days, for Luke, so his dream of running a lemonade stand can come true.
The reason for my determination to have this garage sale is because of Luke and his lemonade stand. Without the garage sale there would be no stand and after you read what his plans are you will see why I am putting up with all of this clutter. In the past few weeks he has gotten his recipe finalized, with fresh mint being the secret ingredient. We are in possession of a board and paint for a sign, and he has decided to add popcorn to his stand because after all the shopping he thinks people will be hungry too; makes sense.
As we were talking he said to me, “Mommy, you know what I am going to do with my money?” I’m thinking he wants to buy a new toy, go to a movie or get some candy. Boy was I wrong.
He says, “I am going to donate my proceeds to NF, so that the doctors can find a cure.” I don’t think I could have been more proud of him if he had won the Nobel Prize. So if you are in the area on Saturday, stop by Luke’s lemonade and popcorn stand and help him raise money for a cure. To help Luke out pass this post on and teach a freind about NF, and about this little boy working for a cure who truly has a big heart that is encompassed in a tiny body.
I will post pictures and write about his sucess!
To learn more about Neurofibromatosis (NF), click the link here, http://www.texasnf.org/ and to read how NF has affected our family click here, http://www.mudpiesformommy.com/p/nf.html
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October 25, 2010
Our First TV Appearance
Luke was so excited to be part of this experience and I don’t think he will forget it for a long time to come. He even got to ask a question on live TV, which we recorded and watched later when we got back home. The producers along with the host Deborah Duncan were very impressed with him, and talked to him a long time, he may even be invited back to tape a cooking segment in the near future. Luke does have big plans to open his own restaurant, Grilled Onion, and he told them all about his business plan. He was smiling from ear to ear and jumping with excitement once we left the studio. “Mom, this was my big break!”
I also got to talk to the producers about filming an entire segment about NF, and they seem very interested in doing that as well. This would be so wonderful for the disorder and would help get the word out in a big way. Another way to help get the word out is though all of you! If I could ask you all to pass this post along to your family and friends to help spread the word about NF and this upcoming event. Thank you so much!
Houston Highlights
Date: Saturday, November 6, 2010
Location: Junior League of Houston Ballroom, 1811 Briar Oaks Lane, Houston, TX 77027
Time: 6:30 PM - 10:00 PM
Evening Format: Seated, four-course dinner
Other: Live & Silent Auction
For more information go to http://texasnf.org/Calendar/Coming_Events/Houston_Highlights
Myelf, Luke, my Mom and the host Deborah Duncan after the show!
This is a post that I wrote back in January 2010. It tells a little bit about my family and our battle with this disorder, Neurofibromatosis. Please read and share this story with others, and donate today!
Running For A Cure
I know that this blog is mostly funny, yet very true stories about how crazy my boys, dogs and life as a stay at home mom are. This post is going to be a little bit different, yet still very true. I do not talk about this often; in fact I don’t even think I have mentioned it before at all. My son and I suffer from a disorder called Neurofibromatosis “NF”, along with my mother and late grandfather.
Not many people have heard about this disorder and even fewer people know what this disorder entails. Our family has been very lucky to have mild to moderate effects from NF. A few years ago however, we had a scare with our oldest son Luke, they found a tumor behind his eye, basically in his brain, that they wanted to keep an eye on. Our first reaction was, “oh, crap, what happens if it grows?” Their answer was radiation or chemotherapy with a possibility of surgery. The idea of brain surgery on my two year old at the time was inconceivable. We prayed every night for the tumor to not grow. We went in for scans, and they were no picnic. Since he was so young they had to put him under heavy sedation so that he would not move during the scans. After several pricks, a screaming baby and a flustered mom, they finally got the needle in, only for it to come out again and he woke up. They tried again, got it and he was out. In he went for his scan. Results…it was not growing, for now. Another scan again in a year. After three scans, and three years, we got the news that we were praying for, no growth and no more scans! This type of tumor does not often grow after the age of three. Thank God!
That night we celebrated with champagne. Not only us, but little Luke had his very own glass!! He was so proud, and we felt so blessed.
Though we escaped that chapter in the battle of NF with our little guy we still may have more to come in his lifetime. We continue to pray for him, myself, my mother and all others who suffer from NF. We pray for a cure.
The reason that this post came about is that my husband is running the Houston Marathon this Sunday January 17th for NF. He has sacrificed his time, body and energy into completing this marathon to raise money for NF. I am so proud of him for doing this for us and others that have this disorder. To learn more about NF please visit their website at http://www.nfinc.org/ or http://www.ctf.org/. And if you are able to make a small donation of any kind we would greatly appreciate it. My husband has a secure site that was set up for the marathon and all proceeds are tax deductible and go 100% to the NF foundation, that site is www.firstgiving.com/derrickhaas. I would also be thrilled if you could pass this post onto others. Thank you so much to any of you who donate, and if you can’t just please go to the web site and learn a little bit about NF, a disorder that is suffered my more people than cystic fibrosis, muscular dystrophy and Huntington’s disease combined.
A little update:
We have just found out that Luke is going to have to have more MRI's for his tumor. We thought we were in the clear, but new research has found that these particular tumors can continue to grow and for now it still needs to be monitored. Please keep him in your prayers!
