Archive for February, 2009

Ha, ha

So remember how I wrote that we are jinxed with little things. And our outbound flight to California was cancelled. Well, our entire airplane experience had a black cloud over it! Now I can look back and say how funny it really was. But also extremely crazy! It took us over 15 hours to get there and over 24 to get home. With our 3 kids! We were supposed to be on 4 American flights total. We did not fly on even 1 of our scheduled flights! Our first flight was cancelled the day b/f due to equipment. We were rerouted on another flight to San Francisco. We were then supposed to have a 5 hour layover in San Fran and switch to Alaska air. Well that flight had mechanical problems and we sat on the plane for almost 2 hours. Now that all seemed bad to us but was nothing compared to our flights back. On Saturday we were supposed to have a connection through Chicago. It was snowing in Chicago and I was worried it would delay the plane and cause us to miss our connection. We boarded the plane and pulled away from the gate and then were told there was a mechanical problem with the plane. We pulled back to the gate and sat there for over an hour and then they said it was fixed. We pulled away from the gate and actually started down the runway. As we were about to take off the pilot put on the breaks.  We went back to the gate with the same mechanical problem. We decided to just get off of the plane at that point. It was now 2.5 hours past when we were supposed to leave. We got off and the gate agent screamed at us that she needed our boarding passes and there was a breach of security. Matt said we wouldn’t give our boarding passes until they got us to NY!  Luckily there was another gate agent who was nicer and there was a plane leaving at the next gate to Dallas and we hopped on it. They said it was full but we didn’t have checked bags so got on it. We got to Dallas but there were no flights to NY so we had to go to a hotel. Well that is a whole other experience. American put us up at the Wyndam in Dallas. As we were going there I called to confirm and asked about adjoining rooms and the man said we could get them when we got there. When we got there a different desk clerk said “there are no adjoining rooms”. I said we were told we would have that and he said no. Then he starts to program in our keys and I asked if the rooms were next door to each other and he said “close”. He had a major attitude.  I said that was not acceptable and he said he could just send me back to the airport.  Control freak!  I was pissed and walked away when Matt came over. The man said to Matt “your wife had a bad day”. Matt was pissed and said “don’t presume what my wife is and we just want what we were told we would get”. He then said to Matt he didn’t need to be treated like a slave and then he refused to give us the keys and started talking to another customer. Oh, yeah, and he told me he was the manager.  I then called back to the number I had originally called and said they needed to send someone else down. Then guess who came down… the manager. And guess what she did she gave us adjoining rooms! We finally got back to NY yesterday at 12:30 in the afternoon, only 13 hours after we were supposed to get home!

Jinxed? hmm…..

But the boys held up amazingly well throughout this entire ordeal! And still want to fly to LA in April to see my sister and her kids!


February 23, 2009 at 11:40 pm Leave a comment


This kitchen project is either go to put me over the edge, put Matt over the edge, or cause one of us to file for divorce (just kidding on that one).  Over the years of our marriage Matt has joked that we are jinxed. Most of the things are just minor things and then there’s the whole cancer thing in his family and the whole ARPKD thing.  A few years ago we were going to Jackson Hole for a wedding and our entire trip there was jinxed. Our first flight was canceled due to weather which caused us to miss a connection which caused us to be a day late getting there. Then we had to fly into Salt Lake and drive from there. Then on the drive in a mustang convertible with the top down but windows up (we thought it would be fun to rent that kind of car) a rock blew up and shattered Matt’s entire window.  Luckily no one was hurt. We laughed about it and just said how we were jinxed!  A couple of years ago we were going to Palm Springs to see my parents and all of our flights were delayed again b/c of weather and then the flight into Laguardia was so bumpy that Max, Nate, and Matt all threw up.  Last week we were at the Bronx Botanical Gardens seeing a train show and walking around outside and Gabe fell….right into throw up. It was pretty disgusting!!  My fear was more that he would get sick from it but so far so good. The thing is Matt thinks we are jinxed. 

Now with this kitchen project it has been a long slow go of it.  We are now into our 16th week of working on it. Really just little things have gone wrong or different from the plan but they add up: the microwave didn’t fit where it was supposed to go and the cabinet maker had to remake the cabinet above where the microwave will go, the microwave had a huge dent in the back of it when we took it out of the box, the stove has a scratch on the front of it, the whole project is costing a lot more than expected (like over $20,000 more), we need a new furnace that costs $14,000, the architect yelled at me and told me I was unreasonable, it’s taking about double the amount of time we thought it would take, we had a gas leak and the gas company had to dig up the street in front of our house to fix it (luckily it was free), we had a water main leak and we had to dig up our whole front yard to fix it (not free – about $7,000), and a few other minor things.  Matt thinks all of these things happened because we are jinxed. I’m not so sure about that.  

But today we got a call from American Airlines that our first flight for tomorrow morning was cancelled going from Laguardia to Dallas and therefore we would miss our connection to Palm Springs. And oh, yeah there is nothing they can do for us. After many phone calls from myself, Matt’s travel person at work, and the infamous Toby Weinberg (my mom) we are now flying to San Francisco at 9 am tomorrow, have a 5 hour lay over there, and then on to Palm Springs. Jinxed??? Hmm. It is Friday the 13th.

February 13, 2009 at 5:32 pm Leave a comment


There are really some amazing blogs out there and amazing people who write them. I sometimes wonder if maybe mine is too much of  a bitch fest. I would love to be that positive person who has a really inspirational blog that others can look to for support, but I’m not sure I really have that in me! But someone did tell me recently they found my blog and emailed me with questions about ARPKD. And you know I’m all about raising awareness of this disease. If I can educate one person who will tell one OB who will then give their patient hope that would be enough!  

I’ve been reading this blog about a husband and wife who were in a plane crash last August. The wife had a blog prior to the crash that had a ton of followers. She was burned on over 80% of her body and has a really rough recovery ahead of her.  But she and her family are amazingly optimistic and positive. And have a very strong faith in G-d.  I do believe in G-d and my religion but am not sure it comforts me as it does to others.  I wish it did! This week I came across another blog about a man whose wife died one day after giving birth to their daughter. He is also so positive and has an inspirational blog.  It is amazing how some people handle various hardships in their lives. It is also amazing to me how cruel this life can be and how some really bad things happen to some really good people.  These blogs have inspired me to “try” to be more positive for my boys and not to feel so sorry for myself!

I’ve been avoiding doing much for the PKD Foundation recently and need to get back into that. I am actually in the process of forming a loss support group for mothers who have lost children to ARPKD. Ironically I am in touch with about 6 mothers who live in my area. How crazy is that? I am looking to have this group at my house in March or April. I hope it helps them.

February 13, 2009 at 10:40 am Leave a comment

Weird thought

I have this friend who I met because she has two kids with ARPKD. She is an amazing friend to me. Today I was wondering what it would be like to be friends with her without all of this ARPKD stuff. I know it would be so much fun.  Lately all of my friends have been annoying me. I feel like they are so wrapped up in their lives and when they complain about little things it bugs me.  I have this one friend who doesn’t work and two of her three kids are in school full time. Her third is in school every morning and two afternoons.  And her husband makes a nice living and is home by 5 on most days. And she is often out shopping. She often complains about how hectic her life is. Today she invited me over and after we were there for 30 minutes she made us leave because she had to go to Target right that minute because she just has no time to get anything done.  It annoys me. I know it’s all relative and that her worst thing is her worst thing, but I would love for my worst thing to be what her worst thing is.  Does that make sense? Does that make me selfish? Or a bad friend? I’m just jealous of her. Or really just jealous of her healthy kids.  Lately this whole ARPKD thing is just so overwhelming to me emotionally.  I feel like I have a disconnect with my friends and family and Matt.  I am thankful my kids are doing well right now but as usual hate that it is hanging over my head.

February 12, 2009 at 5:03 pm Leave a comment

bad blogging

I have been a very bad blogger lately. I’m moody and not in the mood to post. But this week alone I have been emailing two different moms who are pregnant with their third baby who has ARPKD.  They both have older children who they are assuming at this point are ARPKD free. Sound familiar. Gosh it brings back way to many memories and is bringing way too many emotions to the surface for me.  It’s my story all over again. I just hope the babies are born “healthy” and their older children do not have ARPKD. I am glad I can be a support to these people but it also really depresses me. I am in one of the feeling sorry for myself moments. I just hate that I cannot live a carefree life. I hate that the boys have this disease. I hate that I have to worry about it. I hate that it puts a strain on my marriage. I hate that I hate it.  Blah blah blah……..

February 6, 2009 at 9:08 pm Leave a comment

February 2009
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