8.29.2012
Google Alerts
I have a Google Alert set for the word Progeria. Every once in a while something newsworthy comes through but I really need to cancel it since many times it is irrelevant. Recently there have been some people in the cyberworld who have been posting very nasty things about the appearance of children with Progeria and many of the alerts have been about that content. Well, today an article popped up entitled something like "the five weirdest diseases to know" and guess what was at the top of the list....Progeria! I still cannot get accustomed to the fact that two of our children have a disorder that is so rare, so 'strange' and apparently right up there with a werewolf disorder, blue skin disorder and walking corpse disorder. Excellent! I think I will turn off my Google Alerts for Progeria. In related news I have myself and Mark Falcone set as an alert. Apparently Mark Falcone owns casinos in Las Vegas!! I'm amazed that he can travel from Pennsylvania to Nevada and maintain two jobs! I wonder if he has another family as well. If so, I hope his wife is nicer and more emotionally stable than this one....lol.
8.17.2012
Conference Call
I am sitting in the kitchen on a conference call with the people from Boston regarding the clinical trial in which the boys are currently participating. Mark is at work on the same call. Nathan is at Lego camp. Libby is in the living room. Bennett is sitting beside me having a purple ring pop. Things are moving forward but not nearly as quickly as we would like. I don't know if there is a speed that would make us happy. I just want my kids to get better. Nathan turning seven was a big reminder for me that time is moving along so fast and a cure is still not in our reach. I can't think about medications that may happen in one month, three months, a year. I need them to happen now. I can't wait for lab testing and review boards. The scientists and doctors shouldn't be allowed to engage in water cooler talk, take vacations or lunch breaks. They should be finding a cure. {of course I don't honestly believe this} My three year old little man cares nothing more than the purple sticky stuff dripping down his chin...and now he is 'painting' his face with the lolipop. I am crying. Libby is on high alert, coming in the kitchen looking nervously at my expression to make sure her world is not crashing down around her. The doctors are on speaker phone and I am shooing her away so that she doesn't hear the words "deadly disease" on the other end of the phone.
8.12.2012
Happy 7th Birthday Nathan!
8.08.2012
Finding the right words...
Libby is in Lancaster for Pony Camp so it is just the boys this week. I have more to say about Libby and some of her issues but this one is about Nathan. Yesterday after work and while Bennett was still at school, Nathan and I went shopping. We went to the bakery to pick out a birthday cake, Wawa for lunch {a BLT Junior for Nathan minus the L and the T}, the thrift store and Target for school supplies. I love spending time with each of the kids one on one and Nathan is especially fun! He gets lost in the shuffle sometimes but he is such a great little boy!
At Target a little boy stopped short when he saw Nathan and pointed at him, calling his mother to come "look at this little boys weird face." His mother was several aisles over and did not even hear him calling her. The little boy was very young and not old enough to know that this was socially unacceptable so I really could not be angry with him. But of course I was sad. I looked at Nathan for a reaction. He had pulled his hat down further over his face and put the box of Hefty bags he was looking at in front of his face.
I asked him if he heard what the little boy said and he responded with his typical "huh?" I pressed him knowing there was no possible way he did not hear him because he said it two or three times. So I said again, "Did you hear what the little boy said?" He said "no" then paused and said, "you mean when he said my face looked weird?" "Yes" I said, "That wasn't very nice." Nathan said it made him sad and that is why he covered up his face. His eyes got teary and mine did as well. Hmm What do I say? In recent months I heard the story of the girl who was born with no legs, abandoned by her parents, adopted and became a gymnast. And then there is the double amputee Olympian who raced against able-bodied athletes. Stories like these make me wonder what these parents did right? It seems that manage to find a balance between expecting the most from their kids, not making excuses for them and encouraging them to pursue their dreams regardless of abilities. But how I do that? What do you say?
After a quick little prayer I looked at Nathan and instructed him to never cover his face, that Daddy and me and many other people think he has a very handsome face! But as I pushed the cart away my mind was racing, Do I tell him that someday it doesn't matter because our physical bodies will be made whole in heaven? No, No, that seems way to deep for the middle of Target. What about telling him that it will get better as he gets older because we are going to find a cure? Hmm, somehow even I do not have the confidence in that statement to say it out loud to my little boy. {perhaps I should work on that issue} And what about the possibility that it might get worse? What kind of a spectacle are we going to be when Nathan and Bennett a little bit older?
It just broke my heart that my little boy has to deal with a kid in Target telling him that his face is weird. It breaks my heart that Libby will have to deal with this when she is with Nathan and Bennett. It breaks my heart that Bennett will have to experience this too. These thoughts consumed me through the rest of the store and as I watched Nathan play with Spiderman, Power Rangers and Star Wars toys {Libby would never allow us to spend time in the boy aisles. lol}. Because I felt so bad, I even agreed to battle him with a Star Wars light saber in the middle of the toy aisle. ahhh big sigh, deep breath....its so hard to know the right thing to say that will inspire my kids and build their confidence. I want to push them but at the same time Iwant them to feel they are heard and acknowledge their very real and understandable feelings.
Nathan does not seem to notice things like the little boy in Target and I always hesitate to make a bigger deal out of them. I don't want to put worries or sad feelings in his head that may be my feelings only and not his. But I am glad I did in this case. It showed us that he does notice more than he expresses. Although tackling these issues is something we would love to avoid, sometimes it is important to go after them even if they don't demand instant attention.
At Target a little boy stopped short when he saw Nathan and pointed at him, calling his mother to come "look at this little boys weird face." His mother was several aisles over and did not even hear him calling her. The little boy was very young and not old enough to know that this was socially unacceptable so I really could not be angry with him. But of course I was sad. I looked at Nathan for a reaction. He had pulled his hat down further over his face and put the box of Hefty bags he was looking at in front of his face.
I asked him if he heard what the little boy said and he responded with his typical "huh?" I pressed him knowing there was no possible way he did not hear him because he said it two or three times. So I said again, "Did you hear what the little boy said?" He said "no" then paused and said, "you mean when he said my face looked weird?" "Yes" I said, "That wasn't very nice." Nathan said it made him sad and that is why he covered up his face. His eyes got teary and mine did as well. Hmm What do I say? In recent months I heard the story of the girl who was born with no legs, abandoned by her parents, adopted and became a gymnast. And then there is the double amputee Olympian who raced against able-bodied athletes. Stories like these make me wonder what these parents did right? It seems that manage to find a balance between expecting the most from their kids, not making excuses for them and encouraging them to pursue their dreams regardless of abilities. But how I do that? What do you say?
After a quick little prayer I looked at Nathan and instructed him to never cover his face, that Daddy and me and many other people think he has a very handsome face! But as I pushed the cart away my mind was racing, Do I tell him that someday it doesn't matter because our physical bodies will be made whole in heaven? No, No, that seems way to deep for the middle of Target. What about telling him that it will get better as he gets older because we are going to find a cure? Hmm, somehow even I do not have the confidence in that statement to say it out loud to my little boy. {perhaps I should work on that issue} And what about the possibility that it might get worse? What kind of a spectacle are we going to be when Nathan and Bennett a little bit older?
It just broke my heart that my little boy has to deal with a kid in Target telling him that his face is weird. It breaks my heart that Libby will have to deal with this when she is with Nathan and Bennett. It breaks my heart that Bennett will have to experience this too. These thoughts consumed me through the rest of the store and as I watched Nathan play with Spiderman, Power Rangers and Star Wars toys {Libby would never allow us to spend time in the boy aisles. lol}. Because I felt so bad, I even agreed to battle him with a Star Wars light saber in the middle of the toy aisle. ahhh big sigh, deep breath....its so hard to know the right thing to say that will inspire my kids and build their confidence. I want to push them but at the same time Iwant them to feel they are heard and acknowledge their very real and understandable feelings.
Nathan does not seem to notice things like the little boy in Target and I always hesitate to make a bigger deal out of them. I don't want to put worries or sad feelings in his head that may be my feelings only and not his. But I am glad I did in this case. It showed us that he does notice more than he expresses. Although tackling these issues is something we would love to avoid, sometimes it is important to go after them even if they don't demand instant attention.
8.03.2012
Make A Splash!
Make A Splash is a little over a month away! This is our second annual and after the success of the first year we are excited for a bigger and better splash this year! I am convinced that we will not have the sixth and seventh annual Make A Splash for Nathan and Bennett because by that time our boys will be cured and we will move on to Make a Splash for some other children who deserve the same kind of help! So, for the second of five, we need some help to make it a smooth-running, fun event and raise lots of money for a cure.
Here is how you can help our family and other families affected by Progeria
1. Sign up for the event at http://nathanandbennett-eac2.eventbrite.com/
2. Like us on Facebook to receive updates on the event
3. Share the information with friends and family who might be willing, able, interested in attending.
4. Put a yard sign in front of your home or business
5. Hang a poster in your business
6. Donate goods or services to be added to the themed raffle baskets (think gift cards, theater tickets, sporting events and or services)
If you can help with any or all of these things we would love to hear from you! Email us at nathanandbennett@gmail.com
The more publicity, the more attendees at Make A Splash which allows us to raise more money to fund research which leads equals reaching our goal of finding a cure so that our boys can live a long and happy life! {equals one happy big sister, Mommy and Daddy}
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