On Saturday, Mark ran his first 5K run and as Nathan said, "He wasn't last!" Actually he did very well and was very proud of his time especially since the course had a couple big hills. The real reason we went was meet and support the wonderful family who hosted the event. The Owens family lost their 3 year old son, Gavin to Mitochondrial Disease in November 2009. I have been following his mother's blog for more than a year and have been so inspired by her strength. Not only was it great to meet them in real life, but Libby is now very excited to go to Disney next month. Gavin's Mom told her that the place we are staying Give Kids the World, serves ice cream for breakfast!
I tried to get a picture of the kiddos but couldn't get all three to look in the same direction.
And the bunnies have left the nest! I happened to take a picture of them on Friday which was there last day in the little hole. There were no fur balls or anything so hopefully they are okay. Libby was devastated. We saw a little bunny tonight in the backyard. Even though it looked a little too big to be one of them, she felt better.
"You know, just because you have special needs doesn't mean you are more special than me!"
Well said Libby. I never really thought about the semantics of that and how it would be perceived by her. Perhaps 'special needs' isn't the best description for her brothers.
Later she got in trouble for something and stomped off to her room after being corrected by Mark. After slamming her bedroom door she announced:
"If anyone would like to come in my room and tell me that they love me you can!" Mark got a good laugh out of that one.
Right now she is looking at a photo album of herself when she was a baby and asking me all kinds of questions. I am trying to be selfless and answer her but it is difficult to look at those pictures. It reminds me of the time before the pain of having two kids with a fatal disorder. She got teeth, crawled, grew big and strong and walked all within the normal time frames. It was so much easier with her in that way. I have a difficult time accepting that we will not have that ever again.
Bennett is pretty much walking everywhere, including outside. It is very cute. His right foot goes pretty far out to the right. I am so hoping this is just helping him with his balance and hoping it will resolve. I know that his physical therapist reads the blog so maybe she can tell me.
And here is our nest of bunnies! I know this blog entry has little to do with Progeria so if you miss it, it will be back soon. Libby discovered the nest and we thought it was a mouse, mole or vole. When Mark got home he looked and ranted and raved about putting some dynamite down the hole. Then our nature savvy neighbors came home and I asked them to look at it with a flashlight and within two seconds they identified it as a nest of bunnies! They were hairless at that point. Within a couple days they have gotten really cute, with big ears and looking more like bunnies! They are so so cute and I had to share. Its a little late for bunnies but since they are part of the Falcone family, it only makes sense that they are a bit behind! Since I am prone to anxiety though I am now worried that something is going to eat them at night. We will have some devastated kids if that happens.
I must stop writing because Bennett is angrily hitting the computer. He has quite a temper which is not good. Hmm I wonder where he gets that from?? And another question, why is it that a fighting spirit is a good thing but having a temper is bad? I just have a fighting spirit!
Well I watched the Barbara Walters special last night on progeria and it was really really good. It left me with such mixed feelings. Of course I cried throughout the show but initially I was inspired. I was inspired to see how others are able to have a "normal" life while dealing with such a devastating disorder. I was also excited that many more people will now know a little bit of what we are going through. But now I just feel guilty, guilty that I can't buck up and deal with it like those families. Why haven't I rallied and begun fundraising? All I have done so far is thrown a big old tantrum. I tell my kids, "you get what you get and you don't get upset" but meanwhile I am kicking and screaming, stomping my feet and fighting it every step of the way. I am allowing myself to feel the hurt every time something reminds me of progeria which just happens to be almost every minute of every day, when I put 2T clothes on my 5 year old, catch a glance of my 21 month olds toothless gums, see a sign for Fall soccer for 4 year olds and on and on. I seem to be unable to accept and adjust to the discrepancy in what I thought my life would be like and the reality of what it is. The one father said he does not see progeria-he sees his daughter. I see progeria. Does that mean I love my boys less? No, it just means that I wish they were healthy. I wish they did not get stiff muscles. I wish they could participate in anything they want to and I wish they would someday be husbands and Daddy's. Every minute of every day I am aching with the thought of losing them. I cannot fathom that is an abnormal reaction to this situation but maybe it is, maybe it is selfish because they are happy little boys. Maybe I am just anticipating the pain that they inevitably will feel some day and that Libby already has felt through innocent comments from curious friends.
.................but the outfit is even better on day two!!
I can't believe summer is over. I had a lot of fun with Libby this summer. On Wednesdays, the boys had a half day of school so it was just Libby and me. I felt guilty but I did enjoy hanging out with her. She is getting so big and hanging out with with her is so a lot of fun. She is growing up to be such a nice little girl. She is still a bit immature for her age and we have a lot of stuff to work on like her temper and anxiety. She is so creative and always has quite a few bright ideas. This past week she taped a calculator to her door and we all had to punch in a code before entering her room. She makes lots of things with cardboard including a boat and a sled. I video taped her doing a commercial for her sled giving our phone number and address so people could order them "in two different sizes." She is also very protective of her brothers. Here is a picture of her and Nathan at the block party a few weekends ago. She took Nathan in the moonbounce and told the operator that she had to go in with Nathan and no one else could be in there with them. She said it very nicely, not nasty at all. I was so proud of her.