Bennett's soda!

My friend Michelle took this picture of Bennett enjoying his first soda at the Sons of Italy meeting.  As you can see, he was REALLY into it.  His face was priceless when they sat that cup down in front of him!  "An open cup with dark bubbly stuff?  We are with new people so my mom and dad have to let me drink it?  It must be my lucky day!"

Sons of Italy

I am way behind on my blog.  I have sat down many times attempting to write a new post and each time I am stumped about my topic.  My initial goal with the blog was to get information out to family and friends as well as express my feelings about our situation.  It has been successful  beyond belief as I have gotten much emotional relief from knowing that friends and family know what is going on in this crazy head of mine.  Normally when I don't blog, I am feeling much better but lately I have been feeling very down.  I have not written about it because I have said it all before in many different ways.
The pain of watching Bennett's fingers change and watching him lose his hair is excrutiating.  Mark got his hair cut the other day and I'm pretty sure it will be one of his last.  I cannot believe we are doing this twice.  That is what puts me over the edge some days.  Nathan was Nathan and now Bennett is beginning to look more and more like Nathan.  Double the pain, double the heartache, double the children that will most likely not grow into adulthood.  When I see little boys, I just cannot believe that our boys don't look like that and never will.  I have this fantasy that when a cure is found, the boys will return to "normal" but that is obviously just that, a fantasy.  They can't look a certain way now and get a medication and have their appearance change completely. 

I realize that I am overly focused on their appearance.  I guess I am a pretty superficial person or maybe I am realistic and know that appearances dictate many things in life in terms of opportunities.  An overweight person or someone who is unattractive has to have twice the personality, twice the singing ability or twice the talent to be successful.

But that is not what this blog post is supposed to be about.  Two weeks ago we attended a Sons of Italy meeting in Flourtown.  They saw our Make A Splash posters and seeing the name Falcone, they decided to make a generous donation to Fighting For their Future.  We were nervous about attending the meeting, especially Libby.  She was nervous that it would be a bunch of men kissing her on each side of the cheek and saying Mangia Mangia!  I laughed out loud at that which didn't make her too happy.   

We had a great time at the meeting!!  These people were so warm and funny!  A man came over and gave each of the kids a cup full of coca cola and a plate of cookies.  Bennett has never had soda and his eyes became as big as saucers!  He drank it from the open cup pretty quickly and wanted more.  We said no and of course he started crying.  Several ladies crowded around "awing", saying we should give him some more.  It was 8:00 at night!!

So anyway, we were presented with the check and stayed through the meeting.  Their fearless leader admonished the members for not attending some events, reminded them that membership is down and they need new younger members to keep the organization alive.  Someone from the National Sons of Italy attended the meeting and informed them of some of the good work they are doing through their generosity.  At the end of the meeting, raffle numbers were read but apparently there had been a mix-up with the tickets and no winners spoke up.  They gave up and decided to carry the money over for next months 50/50.  There was some teasing of the guy at the door who sold the raffle tickets and then they ate.  Homemade cream puffs, chocolate chip cookies, tomato pie and hoagies!  Mangia Mangia!!  It was very late but a great night!  We feel so embraced by the people in our community.  It took us so long to come out of the closet and now I am wishing we had done it long ago.  I'm not sure what I was afraid of.  Everyone we meet is wonderful, respectful and amazingly generous!

Libby and her recorder, yayyy third grade recorder class!

Nathan at Linvilla Orchards on Saturday

Libby at Linvilla Orchards on Saturday-her butterfly face painting.

Mountains with the Wiand family!

Growing up we had a cabin in Slate Run, Lycoming County PA. Almost every friday our parents picked us up at school in the pick-up truck and we made the four hour trek to the cabin. I have lots of memories from those weekends. It sounds cliche but I can still taste the sandwiches we ate on the drive. My mom packed ham and cheese sandwiches on rye bread with mustard and they were stacked in the bread bag and tied with a twistie. I hate mustard and rye bread but with five kids there were no special orders. So we sat in the back of the truck, no seatbelts or safety features. As the youngest I had the favored seat on the wooden tool bench instead of the metal floor of the truck. We spent a lot of time at our cabin, but also spent many nights at our friends hunting cabin.  There were many families, kegs of beer and old country music on the eight track player.  Everyone was happy (I guess that was the beer) and the kids had so much fun running around with sparklers!   I do remember knowing enough to be scared when they started the fireworks display after having numerous aforementioned beer. And these were real fireworks, purchased down south by one of the guys who drove truck. Every once in a while a large spark would settle on the roof and one of the guys would be forced to climb out an upstairs window to extinguish it. Anyway, it is a wonder we survived those days but all this to tell you that the area holds some nostalgia for the Allison girls. Our fondest childhood memories are of Slate Run where our parents were relaxed and happy, away from the stress of running their business. Our cabin was eventually sold but we are fortunate enough to be able to use the other family's cabin.

My sister Jodi and her family go every October because they live an hour and a half away from the cabin. We could probably go alone but we are not that organized and it would not be nearly as much fun. Each year they ask someone to go with them and this is understandably a coveted invite. We have gone a couple times in the past but we admittedly tugged at their hearts just a little this year. When I had my miscarriage I told Jodi the only positive was that I could go to the mountains in the fall if invited. We also showed them a picture Libby had done in school. The assignment was "Favorite Family Tradition" and Libby drew a picture of the mountains complete with deer and trees writing that her favorite tradition was going to the mountains with her 'cusins'!
 

Of course we had a great time and it went much too quickly. Libby, Mark and the rest of the crew went on a six mile bike ride on Saturday. I stayed back with Nathan and Bennett. Its hard knowing that two years ago Libby did that bike ride and she was six. Nathan is six and isn't even really riding a two wheeler with training wheels. In the afternoon we went on a hike. My sister Jodi warned us that the walk was a little treacherous in places and she was right. There were places in which you had to put one foot in front of the other on a ledge. I wish I had pictures of how narrow the ledge was at places or the areas in which we had to jump from one rock to another but during those parts of the trail I was trying to stay upright. I had purchased a small, cheap backpack for Bennett. He seemed to like it and feel secure. It was a little scary for me to watch Mark trying to maintain his balance on slippery rocks and pine needles with our youngest child strapped to his back but they survived. My brother in law Joel carried Nathan for much of the walk which was very sweet. On the way out, Nathan said he wanted to walk the whole way. Uncle Joel very nicely helped him walk as much as he could even though it was a slow go. Libby of course did fine. I am so proud of us for being so adventorous with two special needs kiddos. And I'm proud of Libby for doing a six mile bike ride without complaining and for riding in the back of the pick up truck even though she was afraid. Of course during the walk I thought that we may be crossing that fine line between adventorous and insane.

This is an easier part of the hike! 

I hate how my mind always goes to being sad at what the boys cannot do. I do not know why I cannot focus on what they can do instead of their limitations. I know it is getting less and less but I hate that I let a wondeful weekend be marred by these thoughts. I try to be more positive, I really do. Anyway, It was a lot of fun! It is awesome to see my kids playing with their cousins and I am so grateful that we get to see them so often despite them living several hours away.

Mark took lots of pictures with his phone so if/when he figures out how to download them I will post some of them too!

Bennett talking

Plugging along

We are here and we are okay.  Honestly there has not been too much exciting to share with you all.  Nathan seems to be doing well in kindergarten.  We had one incident in which he was super constipated at school, screaming in pain and I had to bring him home.  He was really sad because he was buying lunch that day but he did not feel well.  It is difficult to regulate his constipation.  He and Bennett both have miralax in their pediasure each morning, but if they don't drink it then we have problems.  We are planning to be more strict about having them finish it before they do anything else, ie playing or watching television.  I hope this does not happen too often because I do not want him to miss out on school.  Plus there are enough things separating him from his peers that I do not want him spending time in the bathroom and having other kids become fearful of the screaming.  Its a horrible thing when it happens but here at home I can comfort him.  At school there is a limit to what they can do for him. 

We have settled into a routine of getting on and off the bus.  Nathan is getting much faster.  It takes much more planning though because we have to make sure we are not late to get out there in the morning.  Nathan cannot run to the bus stop.  In the afternoons I have to be sure to be out there in plenty of time to get him off the bus as he cannot get down the last step independently.  (I cannot run to the bus either-if I did, it wouldn't be pretty) The only time it gets tricky is if Bennett is still sleeping because the bus stop is about three houses up the street.  I can see the house but I don't like to leave him in here alone.  The other downside that I did not anticipate with Nathan entering Kindergarten is the alone time I had with Libby.  Three days a week we would have almost an hour before school and an hour after school to spend time together.  I must say that I really, genuinely miss that time.  We are going to try to find other time during the week to spend together but it is just not quite the same as that built in time. 

I have been pretty happy lately, sadness comes when I see the changes in Bennett but I am generally content.  I think fundraising has really helped me feel like I am doing something for them.  Of course there are days when it is frustrating to know that the fundraising will be an ongoing process.  I look at other fundraisers entitled, 10th Annual Golf Outing for so and so and I cringe.  We will not be having a 10th Annual Make A Splash to benefit Nathan and Bennett.  We don't have ten years to work with here.  I'm thinking less then Five Annual MAS for Nathan and Bennett so then it can be Make a Splash for some other genetic disorder that needs increased awareness and funding.  So my new motto is "A Cure in Four."