We have always tried really hard to make sure Nate does not feel left out and does not feel like the typical middle child.  We have always been worried that it will be hard on him to be the middle child of three boys and especially since he is the “healthy” one.  But lately Max (not the middle child!) has been saying to me that I don’t treat him fairly. The other day he actually said it’s like I don’t even care about him. That made me so sad.  I really don’t think I am harder on Max than on Nate. I actually think they both get into the same amount of trouble. But they react in such different ways. Max is definitely more emotional than Nate and cries at just about everything. Nate is also a sensitive kid but in a different way. And Max is moody!! And holds grudges. And Nate is not either of those.  Max remembers every little detail of things he got into trouble for and remembers if the same thing happened with Nate and Nate did not get into trouble for it.  This morning the boys were wild and running around the house and horsing around and screaming. To be honest I am not a morning person. To top it off I can’t stand when they horse around in the house. And I hadn’t made Nate’s lunch last night so I was racing around this morning to get it done. So they were running around and horsing around and I heard Max say something to Nate about wrecking his block tower and then the next thing I heard was Nate crying because Max had broken his block tower.  I punished Max for it and of course he started in on it wasn’t fair and Nate never gets into trouble for doing the same thing and blah blah blah and then they had to leave to get on the bus. Max refused to say goodbye to me and stormed out of the house. Now there is a high likelihood that Max will come home later and say he’s sorry because he often does that and then will hug and kiss me. But I hated having him leave for school that way. And I also hate that he thinks I treat him in a different way. Ugh.

I cannot believe I already didn’t post.  It’s only the 7th of the NaBloPo month and I missed a day? Hmm…. I’ll forgive myself though.  Poopy that I didn’t do it, but really the “poopy” is about the 72 hour stool collection we just started for Gabe. Won’t that be fun??!!  The good news is he does not have Celiac Disease. All three of his blood works for that came back negative. The bad news is that they have no idea why he isn’t gaining weight. And the really “bad” news is that we have to do a 72 hour poop collection. I know that in the scheme of life it’s no big deal. But for the next 72 hours we have to collect his poop and put it into this big container (like a big plastic pickle jar). All of the poop for the next 72 hours goes into this one container in my fridge. Bet you’re glad you are not coming over here this weekend!  Luckily we have a downstairs fridge that does not keep our every day food in it!  I’m not exactly sure what they are looking for but something about the fat content of the stool to see what his body is absorbing and what his body is pooping out.  My friend who has a 9 year old with ARPKD is convinced that Gabe is not gaining weight because he has chronic kidney disease. The thing is though my nephrologist feels that is not the reason since he has good kidney function.  Her son was always more severe than Gabe but that is her opinion.  I’m not sure what the next step will be if this checks out okay.  What is frustrating to me is the GI doctor convinced me it was Celiac when we saw her and it wasn’t even borderline. I am glad we don’t have another disease to throw into the mix but annoyed that we don’t have an answer and have to look for one.  I am also annoyed that she seemed so sure of herself with the Celiac disease and now what.  I guess we’ll see what the poop tells us.

This amazing mom (whose blog I have linked to mine) has a poem on her blog from today. I am not sure if she wrote it but it is beautiful. It is about living in today and thinking about her baby that died. (Sigh….) I sometimes feel I complain too much here but often do feel sad about the boys.  But I do know that it is all relative and as my good friend says “everyone’s worst thing is their worst thing”. But reading that brings me back to reality. It does suck that my boys have ARPKD. It sucks more for them than for me. But it could have turned in a very different direction when Gabe was born. We feel we were lucky to not have had the ARPKD diagnosis prenatally. We were lucky we didn’t know Max had ARPKD until Gabe was born. We were lucky the doctors just wanted to focus on Gabe’s lungs and get him through those first 24 to 72 hours. We were lucky his lungs bounced back and he bounced back. We were lucky Max lived 7 whole years without any symptoms. We were lucky Gabe’s kidneys starting working at birth. We were lucky that only 2 of our 3 children have ARPKD and not the third one too! We are lucky on so many ARPKD fronts.

And in this woman’s post for today it says something to the extent of just for today she will not expect to get over her child’s death but instead learn to live with it one day at a time…. I will not expect to get over my children’s disease but try to live with it one day at a time…
And she said that just for today she will remember her child’s life and bask in those treasured moments they shared…I also will try to bask in all of my treasured moments with my boys…..
And she said just for today she will reach out and comfort a relative or a friend of hers who is hurting too… I will also try to reach out to comfort others
And she said just for today she will allow herself to be happy and enjoy herself … I too will try to allow myself to be happy
And an important thing she said is that she is the only one who can make her life worthwhile…and I need to realize that too!

I can’t really post a long post tonight because we are watching game 6 of the World Series. It’s kind of a joke around here when there is a game on and someone asks us if we are watching the “big” game. We are not a big sports family. The funny thing is that Max loves watching baseball and loves talking about all of the players. He also talks about basketball and their players. He knows a lot more than we do about it!!  But the Yankees might win the whole thing tonight and if we were to pick a team it would be the Yankees. We did send the boys to bed about an hour ago, much to Max’s chagrin, but it was just too late for them to stay up. And it’s a good game!!! The Yankees are up 7-1 at this point.  The ironic thing is Matt’s grandpa had a first cousin named, Andy Karl, who played for the Phillies in the 40’s. Matt just connected with some cousins on Facebook (Andy Karls’ granddaughters) and they are obviously rooting for the Phillies.

Today I want to post about Nate. He often gets left out of my postings because he is my “healthy” kid!  But Nate is an interesting boy! He is very quirky and definitely marches to his own beat. And also likes to give me a hard time about just about everything! But lately he has really matured. He used to never want me to hug or kiss him but the other day he was upset about something and actually came over to me for a hug. He also told Matt last night that he wanted me to come up and kiss him. And in the mornings when he leaves for school he leans his head over for me to kiss it!  He also doesn’t give me quite as hard of a time about everything! That has definitely gotten better!!! And he is doing so well in school and in soccer! He is reading really well and really likes school! And is making some new friends.  I often worry about him being the middle one and being the healthy one. But I think he will do okay! And once he is old enough to realize he is the “lucky” one then I think he might be even better.

National Blog Posting Month… hmm….. can I do it? I’m really not sure I will have something to say every day this month. I also fear that I might forget to post every day this month.  I am very forgetful these days. But I will try.

Can you believe someone actually had the nerve to say that to me  about Gabe who knows all about ARPKD and has a special needs child? There are some really interesting people out there. And some really “not bright” ones as well! I wanted to say something else there but thought it would be wrong of me.  But really. He doesn’t look sick. And of course how do you respond to that one.  I had all of these wonderful responses afterwards but at the time just laughed it off.  Matt was sitting right there and didn’t even realize she was talking about his ARPKD because really who says things like that. But honestly a lot of people do comment on that. On the outside the boys look great but their kidneys must look like crap!  Not to mention their livers and spleens!  Ugh. Come on!!!

Today I had a conference for work and one of the teachers I work with drove me there. She was Gabe’s teacher last year and seems like a nice person. She’s about my age, lives in the same city as I do, and is very friendly.  She knows all about the boys’ ARPKD but does not ask a lot of questions about it nor did she donate to the walk.  Today while we were driving there we were talking about families and different things. I asked her about her sister-in-law.  She said she is a very nice person and she likes her a lot but she’s kind of a downer. She then said her sister-in-law has a daughter with some kind of disease and has a g-tube. Then she said her sister-in-law is “all consumed” with her daughter’s health and that is all she focuses on and is very neurotic about it. Interesting!! Does this teacher think I’m a downer and all consumed? And I a downer and all consumed?  Personally I do not think it is a bad thing to be all consumed about your child’s health. I also don’t personally think you are necessarily a downer just for talking about it. It’s hard to be a parent of a child with a disease and it’s good to focus on it and be an advocate for them.  I just really think before you make a comment like that about what is going on inside someone’s head you should really think about it and think what it would be like to be in their shoes.

I forgot to mention how awesome the ARPKD webinar was the other day!!  The PKD Foundation sponsored this educational ARPKD webinar given by Dr. Guay-Woodford, who is the guru in the field of ARPKD. And not only is she the guru but she’s the best!!  She really knows her stuff, plus she is so smart, and just really nice on top of that. And is a very amazing speaker. So besides being so excited that the PKD Foundation is now doing a series of ARPKD webinars I am also so excited that Dr G-W is one of the doctors doing them! We (the foundation) are lucky to have her!!!! What really makes it exciting is knowing that in part these webinars are happening because there are so many ARPKD families out there who raise money for the walk which funds things like this, plus research in ARPKD.  I know in 2008 we raised over $200,000 and I’m not sure on our numbers for this year but it was already well over $100,000 in the beginning of September, which was before many of the walks happened! In case you are reading this and were not able to log on for the Webinar it is on the PKD Foundation’s website!! So… even though I wish we didn’t have this disease I am grateful for the Foundation and for doctors like Dr. G-W who tirelessly give their time and themselves to help our children.