Boston

I knew this could happen.... Our last trip to Boston was supposed to be in July but occured in June so I knew that our next trip could fall in December. We are scheduled to go to Boston the week of Christmas. It will be Sunday through Thursday, the 19th through the 23rd. Originally they had us scheduled to leave Friday afternoon, Christmas Eve but I asked if we could please reschedule the appointments on Friday so we can leave Thursday night. Remember we will be separated from Libby. I am so sad that we will be gone that week. We try so hard to keep things as normal as possible for our kids and Christmas is a wonderful time of year. Oh gosh, I just remembered. I am room mom for Libby's class. We will be missing her Halloween Party because of Disney and I won't be there for her Holiday Party! She loves when I come to her school! I am trying to remind myself that this is not the end of the world, that we should be happy to have this opportunity, but my eyes tear up just thinking about it.

5K Run

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.

new dafos!

Nathan needs new dafos! His old ones no longer fit!! Yayy! Very excited about this and he is also growing out of some of his 2T clothing. This could also be a result of shrinkage from washing and drying the same clothes for three years now but I'll go with the former and just be happy. Speaking of happy, I have been lately. I know this ebbs and flows and right now I am in an ebb (or is it a flow). Sometimes my desire to wallow and torture myself is an attempt to just get all the grieving done and over with, like if I feel it deep enough and intense enough, I'll be all done and can move on. Obviously it does not work like that. Lately I have been not allowing myself to go there when I have a negative thought. For example, we are going to Disney next month through the Make A Wish Foundation. Often I will have this sinking feeling because of even qualifying for such a thing when we should be planning it and paying for it ourselves. But then I refocus and tell myself to just enjoy the trip and not think about the "should's" in life. I've also been able working on focusing on the here and now instead of thinking about the future. Thinking about the future only gets me in trouble. All this restructuring of my thoughts feels so unnatural for me and I worry that it is unhealthy but it seems to be working.

Libby's Quotes of the Day

Libby's quote of the day is a toss up between two good ones. First, in the church parking lot she said to Nathan:

"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.

Response to 20/20 special

So the Barbara Walters special on Friday night was really good and it is great that it improved awareness of Progeria and the clinical trials in which the boys are enrolled. I have seen so many reactions to the show on facebook and other websites. It is such an eye opener to hear people saying they cried while watching it and had to turn it off because it was too painful to watch. Wow! If it is that hard to watch, imagine how difficult it is to live it day in and day out. I work so hard convincing myself that things are not too bad and then seeing comments such as "those poor families" are a reminder that, yes, it is that bad. Other reactions were parents saying they were reminded how fortunate to have healthy children. That is another surreal experience, the realization that our family is the family that reminds you that things could be a lot worse. Being the angry person that I am, my initial reaction was defensive. 'Its not that bad!" Driving home from work last night, I saw numerous people hanging out along "the Ridge" (Ridge Avenue in Roxborough). Many of them I'm sure suffer from numerous mental health problems as well as addiction and probably have no one in their lives to support them. My life seems pretty cushy compared to theirs. When I got home three little people greeted me with a smile, a "Mommy" and a big hug! (Mark also greeted me but he wasn't quite as exuberant.)


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!

Cheese!!

Whenever I post a depressing blog entry like my most recent one, I like to post a nice happy one so you all know I am not suicidal over here. This is Bennett of course. He loves the camera and whenever I take my blanket out to take photos of items for ebay, he sits down and says, "cheese!!" So this is him, with his big ol' smile and those adorable dimples! How can you not smile when you see that face!

Barbara Walters 20/20

I wrote this on Saturday and was not going to publish it because it sounds so angry and bitter but it is part of my journey so I will, hoping that someone will read this and feel a little more normal in what they are feeling (not that I should be any one's barometer of normal)


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.

the deck

Libby and I went to pick up Nathan and Bennett at school today. They were outside. When I walked outside on the deck where the little kids were playing I looked for Bennett. He is usually sitting in a stroller. But no, he was walking around the deck with the other toddlers!!! It was such a wonderful sight!! Off topic, the other kids in his class that have been walking for a while and are quite a bit bigger than him, they are just the cutest little kids. Since the weekend, Bennett has been walking a lot at home but he does still crash a lot. It's quite painful to watch as with most kids learning to walk. I padded the coffee table and the other night while I was videotaping him walk, he fell right over hitting his head on the padding. It seems so strange to have three little people walking around the house, a good strange of course!

first and second day of school

Here is Libby on her first day of second grade.....

.................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.