PS and lots of pictures....

I just wanted to add that my wallowing and poor me posts are really helpful for me.  I felt so much better that I when the kids asked to make a rocket ship out of a cardboard box, I said "Yes!" They had so much fun and worked all day, drawing, painting and left the cutting to me.  I felt like Mother of the Year because this is something that is very difficult for me to let them do.  It made quite a mess and occupied most of my day but was completely and totally worth it.  I need to do more of this kind of stuff with them.  Libby is so creative so I added some pictures of her latest endeavors. 

 First Run!  Nathan is pulling Libby!

 We decided to turn it upside down and paint the top so that we could put the box over them instead of having them climb in the box, seemed safer to me! 

Nathan made the "wings"

Inside is the steering wheel attached to a toilet paper roll so that it can be turned.

Bennett stepped on Libby's foot the other day so she bandaged it up with duct tape!

Libby's hair studio-I love it!

Here is the sign she made when she found out it was our anniversary! 

And Nathan has been printing things off the Internet and we have had fun laminating them.  He printed this weather chart and painstakingly cut out every piece as well as bookmarks for all of us.  Bubble Guppies is a little young for him but I am trying my hardest not to interfere.  He changes the day of the week and the weather every day! 

 In addition to giving Bennett guitar lessons! 

Libby has such an imagination and so much creativity.  We also had a surprise birthday party for Nathan in which she made signs, put on music, gave us all VIP tickets and punched them with a hole punch as we went into the party.  Then she had a little area of the boys bedroom sectioned off with curling ribbon, a decorated chair for Nathan and a desk lamp clipped to a nearby door as a spotlight on Nathan! We wrapped toys and made cards for him!  I wish I had pictures of that because it was really really cute.  Nathan's birthday is next month and he had the biggest smile on his face.  He was so happy to be the center of attention even if it was just me, Libby and Bennett!  So, this is how we are filling our summer days!  Last month Libby went to my mom's house in Lancaster for a week.  Nathan summed it up best when he said, "What are we going to do?  Libby is the one who usually has the ideas and organizes us!"

Jealousy

I believe it can often be a struggle to want what others have but for us this became part of our lives beginning with infertility ten years ago. It sounds awful but it was difficult to see friends around us easily becoming pregnant and having babies. We pulled back quite a bit at the time from our friends but after Libby came it became a little bit easier. There was still that scar that got bumped from time to time but our lives were full. Then when we got pregnant with Nathan, it looked like we had turned a corner. But after prematurity, developmental delays and the diagnosis we realized that period was short lived. 
Being jealous of others is the worst part of our whole situation for me. It is the part that I am embarrassed by, that I pray about the most and that changes the person who I am.  It is one of the things that I fight every day.  It is the one that makes me difficult to have as a friend because so many topics are off-limits (ie. kids growing out of clothes etc.) and I'm sure there is some survivors guilt. 

The warm weather is difficult for so many reasons and brings this anger and resentment to the surface.  All the little boys gathering to play street hockey, all the young families in the neighborhood....  We have seen couples move in to the neighborhood and seemingly right on schedule a baby comes, then baby #2 and within what seems like a short period of time, baby #1 is riding around the neighborood on a bike which Nathan born years earlier still cannot do.  Watching it all unfold without seeing the day to day struggles we all have is obviously an idealistic view (kind of like facebook)  I find myself being very angry when I see these families, not wanting to greet them with a neighborly smile or wave.  I hate this part of myself and that I allow it to happen. 

Mark does a much better job with this then me. Somehow he does not allow it to make him resentful of others.  He does not hurt when he sees other families, children running circles around our kids or kids with full heads of hair.  One time he said he had a hard time seeing a boy throw a ball with his father.  Intellectually I know that other people having typical healthy children does not take anything away from me but emotionally it hurts.  Somehow Mark is able to separate what other people have does not make him sad about our kids.  I have tried to relate it to sports for him.  What about when you look at someone like Cole Hamels who just signed a multi-million dollar deal to play baseball?  That gave him pause but still, not quite the same!

Intellectually I know that life is not fair.  "You get what you get and you don't get upset" is something we learn in preschool, but darn it why is it so hard sometimes to live in that reality? 

The news stories about strangers who hurt or neglect their healthy children is difficult to see when health is something I want so badly for my kids.  Close friends and family are easier because we talk often and I love their kids as if they were my own.  But the strangers I encounter in my everyday people life are the ones most difficult for me.

Summer Friends

As usual I am very late with this but the week before last, all three kids attended Summer Friends which is our church's version of Vacation Bible School! The kids pick two workshops in which to participate and options include things such as legos, drama, sports, jewelry making and many more. During each workshop they listen to a story/read bible verses and then do an activity. So the format is everyone singing together, dividing into workshops, singing together and then repeat. This was the first year that Bennett was old enough to attend the preschool class (which does not do the workshop deal) and so we signed them all up! In previous years I have filled in a day here and there and always told myself that when Bennett was old enough to attend I would teach but.....I did nothing! Nothing, big fat nothing. I felt so guilty but justified it with hopes of spending more time volunteering with the kids of the church when my own kids are a little bit bigger! But two and a half hours every night for four nights went quickly and was very enjoyable! One night Mark worked late without feeling guilty about me being home with the kids, one night we ate dinner out, one night we ate dinner at home together. It was time that we rarely get and it was nice! So I will teach next year (I think lol) Nathan was anxious to attend as is typical of him. Libby had a lot of anxiety about going which was disguised with adamant refusal to attend, complaints of it being babyish and boring. Bennett did not know what to expect and was just along for the ride. After the first night Libby was so excited to go each night! She absolutely loved it and suggested that they have two weeks of Summer Friends during the summer. Nathan had a great time but could not tell us one thing he did or the names of his teachers. Bennett loved it as well and marched in happily every night! First thing he said when he woke in the morning was, "we go to chuuurch?" Even the day after Summer Friends ended, Bennett insisted on going to "chuurch" insisting that there were "peoples there!" At the end of one night Libby said "I just love our church!" Me too! Sometimes I don't want to leave because it is the place where I don't have to explain anything because everyone knows and cares. Everyone loves our kids and want the best for them. No one does a double take when they see our kids or hold their parents hand a little tighter. It is a place of safety and refuge for me and hopefully for our kids.

I am waaay behind in my blog and feeling very guilty. I am risking losing most of my ten followers! I have written several blog posts but have not had the time to proof and post them with the craziness of summer. Having all three kids at home is both tiring and wonderful. It is great not to have to rush around in the morning shouting out reminders but trying to meet all of their demands all day while getting my stuff done is a bit challenging. Putting aside my "getting my stuff done" is one of my biggest flaws as a mom. I need to work on just spending time with them rather than focusing on checking off things on my to do list (which I don't seem to be doing anyway) Updating the blog has been on my to do list every day but as you can see, it has remained undone. Here is one I wrote two weeks ago... I made a really dumb decision recently. Libby has taken a couple friends to the pool but Nathan has never asked. He has been asking this summer if he can bring his friend from school. Libby took a friend a couple weeks ago so I said it was Nathan’s turn. Wanting to encourage his friendships (especially with boys) I thought this was a great idea! I emailed the little boys mom and meanwhile all of my own insecurities surfaced. What if he doesn’t want to go with Nathan? The little boy did want to come with us so on Tuesday afternoon, after work we went picked him up to go to the pool. I think I was more nervous than Nathan! The little boy hopped in the car which is when I realized this might be a mistake. Nathan still cannot get in and out of our car. Well at the pool the little boy flung his t-shirt, flipped his flip flops off, put on his goggles and waited for Nathan. Meanwhile Nathan wears a rash guard, I help him off with his shoes and clip on his vest. His friend jumps in the pool and is doing summersaults and flips. It’s so strange because Nathan and Bennett’s developmental delays on paper are so small but in the world of peers it can be huge. Nathan frequently got out of the pool because he was cold or tired or bored or hungry. His friend could have stayed in all day. Eventually Nathan’s friend found some other little kids to play with which I was relieved about. At least he was having a good time while Nathan was resting or warming up or for the half hour he was in the bathroom (constipation also due to Progeria). It’s so weird being on the cusp of normal. The boys can walk and talk and communicate and play and do 90% of the things typical kids can do. Believe me I am thrilled about that but sometimes it worries me that the 10% discrepancy will keep them out of the loop with peers. I don’t want or need them to be in the popular group but I obviously I want them to have true friends. I worry that because they cannot jump in the pool, because he struggles to get out of his beach chair, can’t be in the sun without sunglasses or spends half hour in the bathroom, that he will be harder to be friends with. Will they have to have superstar personalities because they can’t keep up physically with their peers? Of course I think they have superstar personalities but I am a little biased. But even I get a bit annoyed with how long it takes Nathan to do things or that he cannot get up in the car independently. I was at the pool watching little boys run from the pool to play tether ball and baseball and back and forth and wished with every fiber of my being that the 10% did not exist. What I wouldn’t do to see him keeping up with his peers. It seems wrong that with him walking, talking, attending a regular school, camp and gym class, that 10% still keeps him from so much.