Happy

I wasn't sure what to title this post but wanted to write when I am happy since I usually only write when I am feeling down. I have been very happy and content lately. Whenever the burden of Progeria is not weighing heavy on my heart, I try to determine the reason for the change my perspective. Here are my thoughts. We are moving forward so quickly with the fundraising which is so exciting. There are so many people working so hard for our boys and other children with Progeria. I received the annual report from Progeria Research Foundation yesterday and their tagline "Together We Will Find A Cure" has reinvigorated me. We are so fortunate to be included in the clinical trial and any other trials in the future.

One of the things that I enjoy most in life is spending time as a family doing normal things. Yesterday Mark took the day off to take the boys to the dentist {whole different story}. In the afternoon Libby had Color Day {formerly known as Field Day} and we all went over to the school. Having Mark off from work and spending time with him was really fun. His job is so stressful and between that and dealing with the kids we spend most of time talking who is taking what kids to what appointment, making telephone calls or completing paperwork. Being at Color Day with my husband and three kids, cheering and socializing with other parents....that is what I signed up for! These are the things in life that I love!

I have said in the past that I often feel like we are in a bubble right now that is safe for everyone. The boys don't really understand yet that they are different and Libby does not have to know the prognosis for her brothers. I talked to her the other day and told her that soon people will be asking her why her brothers look the way they do. I asked her what she planned to say. She did not know so I told her she could tell them that Nathan and Bennett have Progeria. She did not think that was a good idea, suggesting instead that she tell people they have special needs. Her reasoning was that if her peers then looked up what the boys had and then told her things that scared her. What a cutie! So I told her that was perfectly fine. It reminded me that this process of coming out of the bubble is happening and its not as bad as the anticipation of it all. Then at Color Day some boys were staring at Nathan and Bennett and whispering. It did not hurt as much as I thought! Our boys look different, but they are the same as every other kid. My boys may not be able to do tug of war but there are lots of other ways they can participate in Color Day.

Lately I have been able to focus on enjoying one day at a time rather than worrying about the future. One of the things that has helped me came about in an unusual way. Libby has been having a lot of anxiety regarding The Rapture. On Friday she came home from school, crying because the kids on the bus told her that the world was ending on Saturday. We had a rough weekend and poor Libby had physical symptoms of anxiety, racing heartbeat, shaking etc. Even though Saturday has passed, she is still concerned. In trying to help her with her anxiety I explained that if you want a flower to grow big and strong, you give it lots of attention in the way of water, plant food and sun. Anxiety works the same way. If you give your worry lots of attention in the way of thinking about it and talking about it, the worry will grow! Well it did not help Libby too much but this elementary concept seemed to work for me. When feel sad at pulling out a pair of 2T shorts for Nathan {for the third year in a row} I am able to push that thought aside. Plus I put Bennett in school for a few hours on Mondays and Wednesdays with Nathan. Having some time to get things done makes me a happy girl! Well off to a Poetry Lunch at Libby's school, Ear Check-up for Bennett, Kindergarten Parent Orientation and Softball Game tonight! Busy Busy!

Kindergarten revisited

Last night Libby had a program at her school. It was actually in her classroom. We love love love her teacher who she has had for two years now {teacher moved up to teach 2nd grade}. To say that we are grateful is an understatement. Libby adores her {verging on worship} and having the same teacher while moving to a new physical building was huge for her. She has much more confidence and has made so much progress emotionally and academically. Libby becomes so nervous in new situations that she is virtually paralyzed. Her physical appearance changes, her shoulders go up and she looks like she is in fight or flight mode. Needless to say it is difficult to concentrate when you are in that mode and in kindergarten and first grade she really struggled academically.

She had a short sentence to read last night and was really nervous, crying the night before because she is "not a good reader and can't do fluency in front of people." She did fine and was so proud to show off her classroom and friends to us. For months the class has been working on a documentary about the bald eagle which was awesome! It was fifteen minutes and very imformative! Libby's teacher is so great and allows the kids to learn in so many different creative ways. I am nervous for next year. Hopeful that this extra year with Mrs. D gave her the confidence she needed to carry her through to third grade.

Incidentally, we believe that her anxiety is the reason she does not want to participate in sports. For soccer at age four, she stood in the middle of the field, looking completely self-conscious for the entire season. She finally had contact with the ball during the last game of the season which we chalked up as success! After a year of not doing any activities, this Spring we signed her up for softball which is going pretty well. {She did get reprimanded for cleaning off the base but I was actually really excited that she noticed it was dirty} We really want to encourage her to do some sports or other activities; not because she is the only one in our family who is capable of engaging in sports. If she does not want to do them that is fine but we do not want it to be due to anxiety. We do not want her to be in high school or older and regret not getting past this so that she could participate fully in life. I know that she may not be a public speaker one day but we want to give her plenty of chances to practice and get past the anxiety if possible.

And since it is always about the boys, my heart was very happy last night for another reason. One of Libby's friends has a younger brother who will be starting kindergarten in the fall too. He and Nathan have never met but little kids do not seem to need that to play together. J and Nathan wound up playing with some kind of magnetic toy on the floor for most of the time. It was so awesome and was really encouraging for me. There were no issues with Progeria, IEP's etc. In fact I'm not even sure if they looked at each other! It was just two little boys playing with a toy they both enjoyed. I was overjoyed to be reminded that Nathan is much more than his special needs. Not to say there won't be issues but like Mark said, we will probably have more trouble with it than Nathan.

Kindergarten IEP

So we have now had three meetings for Nathan for kindergarten. The first one I attended with Bennett several months ago. It was a preliminary meeting for his IEP and they asked many questions about the services that Nathan currently receives and what needs I anticipated for him in Kindergarten. I really did not know what his needs will be until he gets there. In part because he has never been in a completely typical classroom and in part because I have never been in the physical building. {Very long story involving restructuring in our district} So I did not have much to contribute and just kept saying that they needed to meet Nathan to really know what his needs will be. After obtaining paperwork from Nathan's teacher, PT and OT at his current school, IEP team went out to visit him for evaluations. The second meeting Mark attended and they discussed the actual IEP. They determined that Nathan will have an aide at all times in the classroom and will have someone to help him off the bus in the morning and on the bus in the afternoon.


Last week the third IEP meeting was held {and I think the final}. In attendance was myself, Nathan's teacher for next year, the school nurse, OT, PT, school psychologist, a coordinator, school counselor and me {and three kids}. It is amazing to have a room full of people who are ensuring that our son is going to get what he needs in kindergarten. Although it goes without saying that I wish he were just a regular kid that could show up for school in September, I'm so grateful that these people are all there and do such a great job. They did so much work for this IEP and took into consideration his seating (a stool since his feet don't reach the floor), leaving early to get on the bus in the afternoon, modified gym class, OT and PT services and more. There will be an aide for Nathan who will assist him and make sure he is safe at all times, especially on the steps and the playground. I would love for him to not need an aide but it is less that I have to worry about regarding safety. Hopefully her role with him will be minimal and he/she will also help with the other kids and not be on top of him.

My other question was what to tell the kids in Nathan's class. As the room fell silent, Nathan's teacher spoke up and said that will be up to us as his parents. The team said that nothing needs to be said; however, his peers will need to told something because they will need to be careful around him. I would rather get it out in the open before everyone starts asking questions {ie. parents} but I'm not sure how to handle it.

I'm just anxious for Kindergarten to start because the anticipation of the unknown is more difficult for me. I know that every parent worries about their kids making friends but Nathan has so much going against him. He wish he could start with a clean slate like his peers. He will not be the easiest to be friends with as his friends will have to get past the fact that he has an aide, he drools when he concentrates, he needs lots of help with things and is quite a bit slower than the others. But when they get past that, Nathan will know that they are truly good friends rather than ones who will change with the weather. It just hurts that this disorder will shape his personality because of the way people will react to him socially and because of his abilities. Occasionally I find myself wondering what Nathan's personality and interests would have been had he not had progeria. These "wonderings" are obviously pointless and detrimental. They happen less and less but getting ready for kindergarten has sparked them for me again.

We're becoming official!

We are becoming official! We are now on the Progeria Research Foundation website. We had not been invited to be on the homepage until our last visit to Boston. Then we wanted to wait until we got our pictures taken professionally by Carrie Steffe. It feels very good to be official in this way. It's strange how we often don't realize our level of denial though until we take another step towards acceptance. I know that I still am in denial in a lot of ways but this was definitely a big step forward. I'm not sure that Mark was quite ready for it yet but he agreed {I think he did?} In ideal circumstances we both prefer not to draw attention to ourselves. But at this point we obviously need to step out of our comfort zone in order to pursue fundraising and ultimately a cure for our boys.

Speaking of fundraising... one of my roommates from college, Michelle, has rallied us to begin fundraising. We now have a logo. The tree is intended to represent the tree of life and the swirl is representative of the circle of life. It was important for me that the logo was symbolic and somehow Jerald Gottesman (who donated his time) incorporated both which is pretty amazing! My sister Donna did the Fighting for their Future wording. Note the two i's for each of the boys! I absolutely love the whole thing!

Wordless Wednesday {except captions}

Nathan put his hat on sideways and I thought he looked like a tough guy!



When I got the camera out to take a picture of Nathan, Libby decided to orchestrate a faux fight picture. I stopped it before anyone got hurt but took a picture first.