School

I volunteered at Nathan's school today and survived.  Those kids are so darn cute!  Nathan appeared to play by himself a lot but it is the beginning of the school year and a lot of the kids seemed to be playing alone.  The thing that struck me is how different he looks from his peers.  When we are at home I often forget just how different Progeria makes him appear.  I see the veins, the pointy nose, the hair loss etc.  but I forget how a typical six year old looks.  Nathan is really not too much smaller than his peers, definitely smaller but not as much as I expected.  I suspect that will change and become more noticeable as he gets older.  But he just looks so so different. 

He had two "incidents" today.  One when a friend accidentaly hit him in the eye.  His aid took him to the nurses office but I think he really was fine.  The second was a fall on the playground.  According to Nathan he was running to see his friend L (from UCP) and he crashed into someone.  Off to the nurses office again for a bandaid for his hand and some ice for his knee.  He is fine with just a little brushburn on his hand.  It is so hard because we are trying to reassure staff that he is typical in so many ways.  They will most likely stay closer to him which is not necessarily great either.  I'm glad they did not panic and call me for either incident.  They dealt with it and when they realized these incidences were not major, they sent him back to class.  I guess it will be a learning process as they determine his abilities, situations with the potential for falling and situations which he is fine to be left alone. 

I left school today more hopeful then ever for a cure for our boys.  I need Nathan to get better so he can participate fully in gym class, recess and playground activities! 

Speaking of finding a cure....our calendars, "When I Grow Up" are now for sale on the Progeria Research Website. This is a 12 month 2012 calendar featuring pictures drawn by children of what they want to be when they grow up.  They are awesome!  They are $15 each and all proceeds go directly to the Progeria Research Foundation.  If you wish to purchase a calendar you can do so directly to me or a member of our team or you can go to the website to purchase one.  We do not have a check out on our website so at this time we are unable to sell through www.nathanandbennett.org  but here is the link for the calendars. 

Volunteering

I am leaving to volunteer in Nathan's kindergarten class for the first time.  Yes, Mrs. S-I'm running a few minutes late!  I'm nervous and I'm not sure what I am worried will happen.  I guess I am worried that I will see Nathan playing by himself or have kids ask me questions for which I am not prepared to answer.  By the time everyone reads this hopefully I will be finished and be comforted by seeing Nathan among his kindergarten peers.

Second day of school.

Libby and Nathan on the second day of school-not quite as rainy!

Of course Bennett has to wear his backpack out, rightside up or upside down, it doesn't matter!

Early Intervention apparently has Mark's name as Bennett.  I love it!  I'm hoping its a premonition of what the future holds for Bennett!

Kindergarten

So Nathan has been doing well in kindergarten.  There have been several bumps along the way, especially with the bus.  The first two days of school, Nathan had a half day.  The third day school was closed because of flooding in our area.  So on Friday, he had his first full day.

Our first bump in the road was figuring out how to tell the kids in his class about his condition.  First there was talk of pulling him out of class and telling the rest of the class about his condition, asking if they had any questions etc.  For some reason I felt like this would separate him further from his peers and I advocated for talking to the class with him present.  His teacher said that they did talk to the class, with Nathan present and it went fine.  Of course I didn't find out about this until the teacher told me several days later.  Nathan tells us very little about school although his beaming face says things are going well.

Our second bump was also minor, tweeking the letter to all kindergarten parents.  Nathan's teacher helped me to change some wording so that it made more sense and it went out on Monday.  I have gotten several very sweet emails from parents.

Our third bump has been with the bus.  We got Nathan a wheelie backpack thinking that would be the easiest for him but he tries to wheel it up and down the bus steps.  This obviously didn't work and a little boy at the bus stop offered to carry it on for him (his mother actually volunteered him).

On Friday, I got a call from the school psychologist saying that they had a meeting about ongoing safety concerns for Nathan.  Ongoing?  It's the third day of school!!  Anyway, she said that they were concerned about Nathan's safety on the bus and would like to try using a safety belt.  They are concerned that if the bus driver has to stop suddenly, Nathan would go flying.  The only other option she said was the "short bus."  Of course I began crying and babbling about how difficult it is that there is so much focus on his safety, Yes, I want him to be safe but.....  She didn't really get it and said that "it is not like we are sending him home with the seatbelt this afternoon."  Well, he came home on the school bus with the seatbelt on.  It took him longer to take it off and get out of his seat and Libby was upset because no one else has a seatbelt on the bus.

So last night I took the kids to the bus depot to meet the supervisor of the bus depot, Mr. J.  Mr. J was super nice and we discussed lots of different things.  Nathan practiced going up and down the bus steps.  Libby is going to carry his bag and the driver will let them sit together (they separate K&1st from 3rd-5th).  I suggested that Nathan get off the bus last.  The bus driver was telling all the kids to wait until Nathan got off but I think it was making Nathan nervous trying to get out of the seat while there was a line forming.  So this morning he got off and on the bus much quicker and I am a much happier Mommy!  The bus driver is a big imposing gentleman.  Libby is afraid of him but he is so so sweet.  He continually tells Nathan not to rush.  He told Mr. J that he loves Nathan and thinks he is a great kid!  It made my heart swell with pride! 

Mr. J made a comment that I (referring to me as his mother) am used to the diagnosis but it is the school's first experience with this condition.  Yes, we are know more about progeria than the people at school but no, we do not know what we are doing.  Everything is difficult and painful for me as a mother.  Having school staff being worried about his safety, having an aid, knowing the staff is having meetings regarding him and him alone; we are thrilled with all the precautions that the school is putting in place.  We are thrilled with his team but we are not happy with the fact that he requires a team.  We would prefer not to have an IEP, an aide, special activities for gym class and recess.  We would love if he could bounce up the bus steps like other Kindergarteners.  So if we seem uspet when the talk turns to the "short bus" it is not because we are against it or don't think he needs it, its just that we are constantly accepting that our son is not like the other kids.

The first few pictures are from the bus run the week before kindergarten began.  The others are from the first day of school; however, they are not so great.  It was rainy and we were busy getting a neighbor to look at Bennett's head to make sure his cut was healing properly.    

Make A Splash

Make A Splash was a huuuuge success!!  I don't know how to thank each and every person who helped plan and run the event as well as each and every person who came!  Seeing the faces of the people who took the time to come yesterday was amazing!  I cannot thank you enough for supporting our family in this way.  I hope that it was fun for everyone and I hope you all come back next year!  I know it is about fundraising but I wanted to do something that families enjoyed attending and at the same time, some money was raised for PRF.  I was amazed at the support we received from our community, family, friends and church family!  Thank you!  We had a great time and were very thankful that it did not rain.  The gray skies had me very worried but the sun eventually came out which made me feel much better! 

Check out the great pictures taken by one of our hard working members of Team Nathan and Bennett:  Make A Splash 2011  Early estimates put us at about $16,000, all of which goes directly to the Progeria Research Foundation for ongoing research that WILL lead to a cure.  When they have perfected a cure for Progeria, we will continue to hold Make A Splash to raise money for other causes.  Am I right Ladies?  

A big thank you to Michelle K who organized the whole thing, put up with me throughout and has more energy than anyone I know!  Hopefully she will be willing to delegate more next year because this year she did it all!! 

End of summer

I cannot believe the summer is over.  Tomorrow Nathan starts Kindergarten and Libby begins third grade!  The summer went quickly and was really a great one!  We had so much fun, from our trip to Boston in June to a recent visit from cousins with lots of fun things in between.  We went to several Phillies games, Great Adeventure, took walks in the neighborhood, went Miniature golfing, Taylor Swift concert, a wonderful vacation with two of my sisters and their families and most recently several of those same cousins hunkered down with us for Hurricane Irene.  Normally I am excited to get back into the swing of things and send the kids back to school.  Of course I will be happy to have some time to complete a thought but this year there is a twinge of sadness.  It was so nice to not to have to rush them around in the morning and stay up late. 

Last weekend, my sister Jodi and her family came down for a Phillies game.  Nathan was supposed to have his birthday party on Saturday night but we cancelled it because of the hurricane.  Fortunately Jodi and her family agreed to brave the storm with us and stay over for another night.  We had such a great time eating and playing games.  It was wonderful to have a house full of people!!  My sister Donna also visited and Libby and her cousin Claudia got to have a sleep over.   They were so good and are really growing up!

Wednesday we had Nathan's first bus run.  He did fine riding the bus by himself and then we visited his classroom.  He is all ready and has his wheeled backpack filled with supplies.  I am so nervous!!  Less then twelve hours until my Nathan enters the mainstream classroom for the first time since he was two years old!  Five minutes before he got on the bus on Wednesday I wrote a letter to the bus driver explaining Nathan's special needs.  When I had spoken to the bus depot supervisor he told me to talk directly with the bus driver.  I felt like a letter was better so that it could be shared with anyone who is driving the bus.  Fortunately the first two days are half days but I wish I could be a fly on the wall.  It should be interesting!  I also wrote a letter that will be distributed to all kindergarten parents explaining his condition. 

Bennett fell at school on Thursday and has a nice cut above his eye.  It is bigger then the one Nathan got a few months ago but was clean and so it only required some durabond at the emergency room.  These kids are going to give me a heart attack! 

We are getting ready for Make A Splash.  I am so excited!  I know it is primarily a fundraiser but I am more excited just to have a whole bunch of people together who care about our kids.  As I said in the previous blog, this fundraising has forced me to put myself out there more.  We even had our first article published in the Springfield Sun this week!  I actually have begun to enjoy talking with people about the boys.  I got so used to avoiding conversations and people due to the risk of bumping my open wounds.  I am hopeful that with more publicity, people will begin to treat our kids normally.  When we were at Nathan's school on Wednesday several people came up to him and knew who he was from the posters around town.  It was a very strange feeling but I keep reminding myself it is for the greater good.   

Sorry this is all over the place.  We have so much going on right now and all good stuff!!  Here are some pictures!

Nathan's backpack and lunchbag.....pricey but it was difficult finding one that fit his requirements.  It had to be wheelie and the lunchbag had to attach to the outside of the bag like Libby's! 

Libby's backpack

Bennett and his cousin Ginny!

Bennett and Nathan sharing a seat at the Phillies game!  Two for the price of one!

And another change...Bennett is talking up a storm!  It is a riot!  I know that he is a bit behind his peers but whenever they start talking, it is just awesome!  He chats away, asks us questions and makes observations!  I cannot think of anything specific but it is so darn cute!  Yesterday he was not so cute getting ready for church.  He wanted to wear his sandals and threw himself on the floor, banging his fists in frustration!  "I want sandals, no sneakers!"  It was a little funny. 

I'll let you all know how it goes tomorrow!