This weekend we had so much fun! Janice and Don came from Illinois to visit us for a couple of weeks. (Don is only staying on the weekends and has to work in California during the week.) Kayden turned 4 and had a birthday party for all of his friends to come and swim in the kiddie pool and jump on the trampoline. The adults sat in the front yard under the cool maple tree and had a good time just catching up on what was happening in every one's lives. Tammy and Ben made yummy kabobs and afterwards we all indulged in creating and eating ice cream sundaes. These are my favorite kinds of birthday parties to attend: low maintenance and the kids still had a great time. Elisabeth gave Kayden a remote control backhoe and was so proud of picking out a toy just for him.
I do have to vent a little here... we brought Nathan along for the party since he has been doing so well from his open heart surgery. Since Nathan has a helmet to reshape his head from spending half of his life lying on his back in a hospital bed he tends to stick out a little bit. One of the moms at the party saw me feeding Nathan from his G-tube and saw how I had to "vent" his bubbles from his belly. Most people are a little taken back by this (I've decided the vast majority of the world isn't ready just yet to see that). She said that she had a niece who also had a g-tube. She then went on to tell me that the niece is in a vegetative state and began telling me all about her problems. I was so grateful listening to her that Nathan's problems are nothing in comparison to that. Then out of the blue she started comparing Nathan to this girl in which the only similarity they had was having to eat through a g-tube! I was flabbergasted! What floored me was when she asked, "Is Nathan ever going to be normal and talk and walk and eat through his mouth?" and when I said yes she followed up with, "How many more surgeries is he going to have before he's NORMAL?" I need everyone to know this: Nathan's future outlook is VERY GOOD. Yes, he's going to need his pulmonary valve replaced in the future and NO, we don't know when. Yes, he has a cleft palate and yes, he will need to have a couple of surgeries to fix that so he won't have food coming up his nose every time we try to give him something through his mouth. No, Nathan doesn't have any neurological problems other than having to deal with an overprotective Mother and a sister who "loves" him sometimes more than she should. No, he didn't have/or need brain surgery and yes, he is going to likely struggle a little with speech. Yes, SOMEDAY he won't have a button in his stomach and yes, Nathan likes some food. Yes, Nathan is only the size of a 4 month old baby and yes, he does have chubby cheeks and looks totally normal. Yes, he will always be followed VERY closely by a cardiologist but that doesn't mean he can't be the starting pitcher for the Boston Red Sox. No, he's likely not going to be a quarterback for BYU, but hey, baseball is the better sport anyway. But you know what? He's going to live just as normal of a life as his older sister. So I'm asking everyone to please think about what you're saying in regards to Nathan before you actually say it. Some of the things that have been said to me in ignorance have really started to bother me. Most of the time I just forget about it because they have no idea what I've been through and I usually don't want to give the hour explanation of what happened to Nathan these last 5 1/2 months. I know I should just brush it off, but this last encounter really, really hurt. Most of the people who read this blog aren't the problems, what I'm saying though is think before you speak even to strangers because you have no idea what they are dealing with.
I'm really excited that Janice, Brennan, & Nolan are here for a couple of weeks. It will be nice to be able to go and do a few fun things with Janice. Tomorrow we are going to see Dr. Sidiqqi (the plastic surgeon) for details on repairing Nathan's cleft. I'm hoping that we'll have some good information tomorrow about what the future plans are going to be.
1 comment:
First of all I just want to say that I think Elisabeth's hair looks so cute in a half-up ponytail. Second, I can't wait to finally meet Nathan in a couple of weeks and third, people can be so dumb. There are better ways of wording questions than asking things like "when will he be normal", etc. I'll probably have lots of questions in a few weeks, but that's because I'm my mother's daughter and love to know details. ;)
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