7.13.2012
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.
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3 comments:
Hi Phyllis,
I won't leave! I am often praying for you boys, family and the daily issues you have to deal with.
It is so hard, as a mom, to want the best for our children and it is only natural that you are concerned about the 10%. I am praying that you will find peace in the 90% of what they do have.
I have a son who never fit in and it always worried me that he just didn't have friends or if in a group he was always on the outside. I know this did bother him some but I believe it bothers me more than him. One thing I am learning that I will share with you is I have to make sure I show him unconditional love and that I accept him as he is so he can become secure in himself so he can grow. It is hard though because of the insecurities that rise up in me I don't want to pass on to him. This is where I need to draw on God to help and fill me up so I can give to him. It is not easy work and I seem to fail quite a bit but I just keep trying.
It sounds like you are having a great summer so far. Praying for you guys often.
God Bless,
<><
Hi,
I've been following your blog for a while.
Sorry to bother you with this - but on FB I've come across a group named "stop the aliens before it's too late" (actually, when I type it into the search box a couple of groups pop up). They are using photos of kids who are obviously affected by progeria. I'm sort of hoping you're involved in any networks where you can spread the word so maybe their parents will be aware that their photos are stolen and their kids made fun of?
Thanks! Adi
Thank you Adi, I know, I have been seeing it and families have seen it. Some families have made the decision to remove pages and pictures which is a shame because it is all about spreading awareness. Thanks for reading and supporting us!!
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