The Walk

Well, my fourth Walk for PKD has come and gone. It was very nice! The weather was perfect and everything went as planned.  My raffle was a success and there were over 200 people at the walk. Kenny the Kidney (kennythekidney.com) even came!!  And Max’s whole soccer team came as well, which was so sweet. They all wore our three peas team shirts and all wore the “I walk for” stickers and wrote “I walk for Max”. It was very touching.  It meant a lot to me that they came. And of course my two really good friends whose names are the same and start with “A” came with their kids. My parents and in laws were there, our nanny, my sister, our really good friend “M” who always comes, and a few other friends as well.  We had close to 30 people on our team again, which was way more than I thought would be there.  And we are almost up to $14,000 which is beyond my dreams for this year. My goal was $18,000 but I am so happy with 14!!! And now it’s wind down time for a little bit, until the next thing.

My dad asked me if I could take a break from PKD now. I was really insulted by this and didn’t know how to respond. My response of course should have been that I can’t take a break from PKD since the boys can’t take a break from having PKD. But I didn’t think about that until after the fact. I might actually tell him I’m upset about it to get it off of my chest.

Emotional

My friend’s daughter is having a kidney transplant as I write this. My friend is posting it all on twitter as the process goes along. I am so emotional. I wish I could have been there for my friend. Plus all of these other emotions are coming out. About my boys having transplants, etc.

My friend posted a picture of the healthy kidney going in and the one they took out from her daughter and it is unbelievable how bad the ARPKD kidney looks.

Yesterday someone asked how my boys were doing and then said “but they look so good”. On the outside they do look so good but on the inside they really don’t. On the outside I seem so calm but on the inside I’m really not…..

happy

We switched pediatricians about a year ago and I couldn’t be happier. I am so pleased with how she handles all of our appointments and how much time she gives and how she listens to everything I say and seems to care! Today we went in for a weight check on Gabe. He has not been gaining weight as fast as we would like for him to and she has been monitoring his weight for the past 8 months or so.  We went for a weight check in July and then saw the nutritionist in August and she had wanted us to come back in for a weight check about 2 weeks after that appointment. Today when we were there it appears that Gabe has lost a pound.  It’s not a huge concern but she is concerned by it. She also agrees that pediasure is not the best answer. One theory she is slightly concerned about is that Gabe makes a lot of bowel movements and maybe he has an absorption problem. I had mentioned the quantity to our previous pediatrician more than once but he was not concerned. Anyway, my new awesome pediatrician is going to call our nephrologist on Monday to talk about everything. And then she is going to get back to me with the answers. How great is that!!! I feel lucky to have found her. And I feel heard! And I feel she is helping me advocate for my kids.

dreams

I think I’ve posted before that I started having panic attacks a couple of years ago. I also tend to have bad dreams or wake up with a panic attack. A recurring dream/nightmare I have is that a heavy object or the house is falling on me and I will die if it does. It is very scary and I often wake up screaming with my heart racing.  Sometimes I’m in like a half dream/ half awake state. I think whatever is in my dream is in fact real but I am somewhat awake and can talk and move. That happened last night. I woke up screaming thinking the house was about the fall in and crush me and I had to get out. Matt said I was flailing about and trying to get out of bed. He was so good though (he’s used to it by now) and he held me arms and calmly told me to wake up. I finally did wake up and my heart was beating so fast I thought it would pop out of my chest. I hate when I have these dreams/nightmares/panic attacks in the middle of the night. They are so draining and scare me. I talked about it today in therapy and we discussed how my old therapist said something big has fallen on me and this is one way my subconscious is dealing it. My therapist today said she thinks it’s also that I feel trapped in this situation with the boys and feel so out of control. She said it also goes back to my childhood and feeling out of control and not having a say in anything. Interesting thoughts. Now if I can just work around these things so these darn panic attacks stop happening!

kidney transplant

In thirteen days this really awesome friend of mine’s daughter will be having her kidney transplant. I cannot even imagine what it must be like to be her right now. I know what it feels like to be her 4 years ago and having two kids with ARPKD and not really knowing how the future will play out. But now, I can only imagine what thoughts are going through her head and what chores she must accomplish prior to the big day.  I think about her all the time and wish we lived closer so I could physically help out rather than just sending notes and emails and goodies in the mail.  I am thinking really good kidney thoughts for them!

three and a half

I cannot believe that my little baby, Gabe, is three and a half today. Wow!! Crazy how time flies by. He starts in his 3’s nursery school class tomorrow and today his teachers came by for a home visit. It was so cute. I am really happy with his teachers and know he will have fun in school.  They asked him when his birthday was and I heard him say “I’ll be four in March”. So cute!!  Of course I might be slightly biased but I truly think he is the cutest, sweetest thing!

We are working on potty training which is a really interesting thing. First of all I think boys take longer to train then girls. But then on top of that he has this kidney thing and that makes it that much harder. He has so much urine and is always peeing! But seems to have gotten it down for the most part. I just hope he doesn’t have too many accidents in class!!!

So, happy, happy half birthday my little baby!

Disappointed

I understand that my friends have their own lives and that my walk isn’t a big priority for them. But I have to admit I am still disappointed that they are not coming to the walk.  To them it is just no big deal but it is such a big deal for me. I guess I just feel like they don’t support me with the whole ARPKD thing. Plus, and I can’t remember if I blogged about this before, but I asked my friends to ask $18 for $18 and no one is doing that either. One friend actually said she doesn’t solicit friends for money. I just think they really don’t understand what it’s like to have kids with a disease. Some people surprise you though and say nice things. Just yesterday I thanked someone who I don’t know that well for their $100 donation (which was so generous) and they said they had no idea about the boys and asked if there was anything they could do for us.  It’s some of the people I least expect who surprise me and the people I thought I could count on who disappoint me.

School days

Well school starts tomorrow. Remember when you were young and that last night of summer and the feelings you felt before school started for the first day. Ahh…. such memories. Not all good ones but memories all the same. I was always so nervous that night before a new school year and really hated the first day. But things are different now. My boys know who their teachers are and who is in their class. And they both have awesome teachers! I am so excited for their year and their teachers!!  I’m only talking about Max and Nate here though. Gabe doesn’t have those feelings in nursery school, but I also do love his teachers this year!!!  And I cannot believe I actually have a fourth grader, a first grader, and a 3 year old. Crazy. Am I that old??

Today I was in charge of the teacher welcome back luncheon at the public school and it felt good to do it. I like planning this lunch and being so involved in their school. My friend emailed me before and said a friend of hers told her she does too much and should cut back on some of her volunteer work. I hear that often from family and some friends but usually these people just don’t realize how much this type of work gives to us. Some of us just need this in our lives to help us cope with other things!!

Annoying

Do you think my friends find me annoying that I am so obsessed with ARPKD? Do you think they think I’m crazy for obsessing about it so much and talking about it so much? Do you think they are sick of hearing it? Do they think I make too much of it? Do they want me to stop talking to them about it? Do they want to stop coming to the walk with me and stop donating as well? Do they think I exaggerate the effects of ARPKD and what the future holds for us? Do they pity me and that is why they are still friends with me? I’m not talking about my ARPKD mom friends here, but these are the questions that go through my head, amongst so many other things in there! I have to stop thinking for a while maybe!

Today’s Quote

What lies behind us and what lies ahead of us are tiny matters compared to what lives within us.

Henry David Thoreau