You’ve got troubles

Or so I hear from a complete stranger, believe it or not. Last weekend Matt and I had a table for ARPKD at our Temple’s Hanukah Boutique.  This woman came over and Matt was explaining to her why we were there and said there was an article about our boys that she was welcome to read. And her comment was “you’ve got troubles”. Is that the most idiotic thing you’ve ever heard. Matt is so good though. I would have just been so upset and either not been able to comment or said something stupid. Matt just said “we’ve all got troubles in our lives and this just happens to be ours”. I am so glad the boys didn’t hear that. Especially Max. He hears everything these days and questions everything too!  The nerve of people. Especially at our own Temple.

Letting Go

(I was reading through some of my old posts and realized I never published this one and decided to do it now even though Yom Kippur is well over with for this year).

“Letting Go” ….. Is one of the themes of Yom Kippur. That and atoning for your sins and hoping to get written in the book of life.  This morning at services the Rabbi told a story of 3 monks crossing a river. 2 of them passed by an older woman who was unable to walk across on her own. The third helped her across.  A few miles down the road the 2 monks who did not help out said to the third they couldn’t believe he had helped the woman. How could he have let go of his beliefs to do that. The 3rd monk said “I let that go miles ago. It is you who have not let it go”. Of course I might be misquoting the story somewhat but you might see the point.  For me it has been so hard to let go of many things. I have written about this before.  I still have vivid memories of Gabe’s birth and his time in the NICU and of the diagnosis of the boys. I cannot let all of that go.  Plus letting go of my anger and sadness that the boys have ARPKD. 

I’m not sure I’ve thought about Yom Kippur and it’s meaning as much as I have this year. It is a very interesting holiday.  It is all about treating others how we want to be treated and really letting go of all our hatred, prejudices, cattiness, meanness, etc. Sometime I find myself gossiping about others or judging others and then I stop myself and really try to be a better person. We were picking out books for our classroom at school at the book fair and I would pass many books by without looking at the inside because I didn’t like their cover. My co-teacher said to me that I shouldn’t judge a book by it’s cover. But, I do find that to be true of myself. I think I was raised in a very judgmental household and am trying to stop myself from doing that and also stop myself from passing that horrible characteristic on to my children. I really try hard these days to not make a comment about someone I see based on what they are wearing or doing and just keep my opinions to myself. This isn’t always easy to do but at least I am aware of it and trying to change. I am so glad I went to Yom Kippur services this year and heard that story and let it touch me in this way.

Another One

How is it possible that yet again I am in contact with someone who is pregnant with an ARPKD baby and has been told there is no hope for survival. Another ARPKD mom forwarded me information for a woman in a very small town in the south who is about 37 weeks pregnant with an ARPKD baby. Her hospital does not have a NICU and she has not yet spoken with a pediatric nephrologist. She had to drive over 2 hours from her house to see a perinatologist. So far all of the doctors she has seen have given her baby no hope for survival.  She even has some amniotic fluid, a level four. And her baby moves around a ton. And yet there is no hope for survival. And they told her there is not need to even deliver at a hospital with a NICU. That won’t make a difference. This is just so frustrating for me. And just so sad. I have given her a lot of information. I only hope not too much information. I have also given her my opinion on a lot of things, which I hope is okay. I really feel that a C-Section is the best thing for the baby. I also think that she should deliver where there is a NICU. I also feel that everything should be done to try to save this baby for as long as possible.

And then there is the hard stuff I felt I needed to tell her. Like having a photographer present in case the baby does pass away. That way they will have pictures of the baby and won’t regret it later on. And then about having an autopsy done and DNA for future pregnancies.  

I am happy I am here for people like this woman. But I am so sad that anyone has to be in this situation. For me I hate that my boys have ARPKD, but am so thankful they are alive and on the milder side of this disease.  We never had to make any tough decisions like this woman might have to make and for that I am grateful. I just hope I have given her some help and possibly some hope. And I truly wish there is hope for this baby.

Another One

How is it possible that yet again I am contact with someone who is pregnant with an ARPKD baby and has been told there is no hope for survival. Another ARPKD mom forwarded me information for a woman in a very small town in the south who is about 37 weeks pregnant with an ARPKD baby. Her hospital does not have a NICU and she has not yet spoken with a pediatric nephrologist. She had to drive over 2 hours from her house to see a perinatologist. So far all of the doctors she has seen have given her baby no hope for survival.  She even has some amniotic fluid, a level four. And her baby moves around a ton. And yet there is no hope for survival. And they told her there is not need to even deliver at a hospital with a NICU. That won’t make a difference. This is just so frustrating for me. And just so sad. I have given her a lot of information. I only hope not too much information. I have also given her my opinion on a lot of things, which I hope is okay. I really feel that a C-Section is the best thing for the baby. I also think that she should deliver where there is a NICU. I also feel that everything should be done to try to save this baby for as long as possible.

And then there is the hard stuff I feel I need to tell her. Like having a photographer present in case the baby does pass away. That way they will have pictures of the baby and won’t regret it later on. And then about having an autopsy done and DNA for future pregnancies.  

I am happy I am here for people like this woman. But I am so sad that anyone has to be in the situation. For me I hate that my boys have ARPKD, but am so thankful they are alive and on the milder side of this disease.  We never had to make any tough decisions like this woman might have to make and for that I am grateful. I just hope I have given her some help and possibly some hope. And I truly wish there is hope for this baby.

Blog Obsessed

Have I ever posted before how blog obsessed I am? I become attached to certain blogs and cannot stop myself. Some are even of people I don’t know. This summer I was watching the news in the morning and the Today show had on some siblings from Utah whose sister and husband were in a horrible plane crash but survived. The sister had burns over 80% of her body. This person has been writing a blog for the last few years about motherhood, being a wife, her faith, etc. The siblings started raising money on their sister’s blog. Of course I started reading it and now am obsessed. Today one of the sisters wrote this:

“I have never known the heaviness that I have felt the past few days. It weighs upon your heart and never leaves your soul. Though I have prayed for it to leave, I have come to understand that this is part of the process. Sometimes there is nothing to do but feel the depths of humanity. And I can’t even begin to imagine those who will feel it much deeper than I do now.”

I hope it’s okay I posted this. I didn’t ask her for permission but was just touched by what she wrote. These people are so trusting of their faith and have so much belief in it and that G-d will work it all out. I really admire their strength in dealing with this situation. And their eloquence in their blog.

What’s in a Name

Matt said something that really touched me today.  He said he wants to talk to our rabbi about getting a Hebrew name.  Matt was raised Catholic and when we got married did not want to convert, which was fine with me. But he did agree to help me raise our children Jewish. And he has been keeping that promise. He comes to all the services with me, takes the boys to Sunday School on Sundays, attends things at Sunday School for parents, helps celebrate all of the holidays, and even made some Mezuzahs for our house and my family’s houses.  About a year ago one of the Rabbis at our temple asked Nate what his Hebrew name was. Then Nate said what’s yours mommy. And then he asked what daddy’s was. I said daddy doesn’t have a Hebrew name because he was not raised Jewish.  The Rabbi then said to me that Matt could take a Hebrew name without converting. He said there is a nice ceremony for it. Then when the boys have their bar mitzvahs and the Rabbi calls out their name in Hebrew they could then say in Hebrew son of (my Hebrew name) and (Matt’s Hebrew name).  I told Matt about it a while ago but he really didn’t comment on it. Then this morning out the blue he said he is going to talk to the Rabbi about it when we have brunch at his house in a few weeks. Max is really good friends with the Rabbi’s daughter and they invited us over in a few weeks.  I got the chills thinking of it because I think when you marry someone of a different religion but try to embrace the religion as much as possible without actually converting and becoming that different religion you really are sacrificing a lot. It really does mean so much to me that he is even considering it.  I thought of a name for him too. Someone recently said that Matan means Gift and I like that one. But really whatever he chooses will be fine.

Bunk Beds

We bought the boys bunk beds and they were delivered last week and the boys were so excited, and still are. We put the bunk beds where Nate’s bed was and left Max’s bed alone. The sad part is that Max really wanted to sleep on top but for now we had to tell him no because it is too hard to get him down from a top bunk at 11 when we take him to the bathroom. He was definitely disappointed, but to say the least Nate is thrilled! I think it was good for Nate to be able to sleep up there and maybe makes him feel more mature and special! We gave Max the choice of his old bed or the bottom bunk and he chose the bottom bunk. And then last week Gabe started sleeping in Max’s old bed. And it is the cutest thing. He only got out the first couple of nights (last week one night at 4 am) but otherwise has been great. And when you ask him where he sleeps he says “in a big boy bed” in the cutest little voice ever. My baby is growing up, way too fast!  So now all three boys are in one room and Gabe’s old room will officially be the playroom and have a guest bed as well. And tomorrow we are getting rid of the crib, which I am actually happy about. I am tired of looking at it (for the last 8 and a half years!).  

The kitchen renovation is moving along. Slowly but surely.  The cabinet maker somehow miraculously almost finished the cabinets after 2 weeks when originally it was supposed to take four weeks. And now is hounding us on where to store them. Huh?? Our architect keeps bugging us about putting them in the basement but that is not going to happen. First of all our basement is damp and second who would be responsible for moving them in and out and what if they get damaged. So, I’m just not mentioning it and we will see what happens!

Cranky

I am cranky today and frustrated and itchy…. from a weird flesh eating virus attacking my body! My ENT (I know not really an expert on rashes) first said I should be worried about it and is it an auto immune rash??Then my dermatologist said it was a contact dermatitis, possibly poison ivy or a bug bite gone awry, but she really doesn’t know what it is so did a biopsy of it. Then we found out the diuretic the ENT put me on 7 weeks ago is sulfa based and guess what I’m allergic to sulfa. So now the ENT is saying it is a strange allergic reaction to the medication.  Huh??? Now what. And since I passed both hearing tests yesterday (which is a good thing) but am still having the symptoms the ENT wants me to do more tests. First I had a hearing test and then the ENG test. Then the first ENT sent me to the neuro ENT. Then he had me do the MRI and another hearing test. Then he had me do 2 more hearing tests. And now he has me doing a sonogram of my corotid artery and a doppler of my vertibular artery, and something called a VEMP which is some kind of balance test. Well, to say the least I am all tested out. I called the first ENT to run it all by him and he just feels that the neuro ENT is being overly cautious and doesn’t want to miss something since I still don’t feel great. 

At this point I am tired and cranky. Tired of not feeling well and tired of not having a complete answer. And really just cranky for all of the above and then some.  

And then there’s the whole kitchen renovation thing that I really needed to do like a hole in my head and now cannot turn back since my kitchen is completely gutted. And Matt and I cannot agree on the floor tile, which is slightly frustrating. 

Yet again another complaining blog. But, I did get out and vote today and as of right now it likes like Obama has the lead. Which for me is a good thing because he is my choice.

It is what it is

I know that better than anyone but really don’t need someone to point that out to me. Especially someone who lives a very blissful life.  (This mom whose daughter is in school with Gabe was talking to me the other night.)  Her “bliss” is so very different from the “blissful” weekend I described the other night. Her bliss is pretty much an every day kind of bliss.  Her biggest complaints are that she only has 10 hours of child care a week and she’s exhausted by the end of the day. Did I mention that she doesn’t work, lives in a huge house, appears to have a decent amount of money, and oh yeah has 2 healthy girls.  So the other night when I was talking about the boys and she said “it is what it is” I really couldn’t believe my ears. This was right after she made a comment on how she never donated to my team and will figure out something. Huh?  It kills me when people make those comments. How much easier could it get then me sending out 2 emails about the walk with a button to push to donate.  But that’s fine if people choose not to donate for whatever reason but don’t make a comment now to me about donating (when the walk happened over 6 weeks ago). That just irritates me more!  And people who live in la la land really just don’t have the right to comment on my life and tell me “it is what it is”. Well yeah it is. For you it is blissful and healthy. For me it is somewhat blissful with crappy kidneys on the side.  I do feel lucky and fortunate to have so many of the things I do have but like I have said numerous times I wish I had healthy kids.  I guess it just rubs me the wrong way and also kind of rubs it in my face when people like this make stupid comments like that to me.

Happy Halloween

a day late! I’m so upset because I lost the cord that connects my camera to my computer and don’t know how to download all of my awesome pictures… for the last six months! But most especially from Halloween. I know I am biased but boy are my boys adorable! All four of them.  We had Luigi, baby Mario, big Mario, and a clone trooper. Can you guess who was who?  They all looked so cute and we had a really great time trick or treating!  And really they didn’t eat too much candy although Nate did have a tummy ache this afternoon and it wasn’t too pretty but seems to be fine now!

On a side note: Gabe climbed out of his crib this morning for the first time. He is actually the first one of our boys to do that.  He told my in laws about it and they asked if “Eep” (his blankey) got in trouble and he said “no my in trouble”. He is so deliciously cute!!!! I left the side rail down tonight. We will see what happens tomorrow. We just bought the boys bunk beds but I really don’t think Gabe is ready for a big boy bed. We tried it a few weeks ago and he came out of the room at least 5 times and then I put him back in his crib.