Archive for June, 2009

Happy Birthday, Nate

At 12:57 on June 17th, 2003, you came into this world. My one “normal” pregnancy and “normal” delivery and my not so “normal” child!! You are one of a kind, that is for sure!  And I love you the more for it.  You march to your own beat and do your own thing and I hope as you grow older you continue to have the confidence to do so. I am enthralled with your love of animals and nature and enjoy watching you interact with these things. We had the best birthday party and my favorite part was when the boa constrictor was wrapped around your body and you had the biggest grin on your face.  I love when you smile! And when you do something devilish!  And when you say silly things.  And you are a maniac on skis!!  No fear from you.  I wish I had your fearlessness!  And your love for life!  You have brought so much joy to my life and I am happy to have you as my “middle” little boy.  You have a tough road ahead. You are lucky that you are our “healthy” son but I know it will be a burden for you as well.  And I am so sorry for that. But I hope you will come to accept it as you get older. And I hope you always know how very much we love you.  

Happy, Happy Birthday, Nate…Nate the Skate…Nato potato….stanos…..

love you 🙂


June 23, 2009 at 11:37 pm Leave a comment

ARPKD Newsletter

Click on this link:

to see the ARPKD newsletter that I just finished writing. I am very proud of this newsletter. And especially of the new “Remembrance” section we added to it to honor those children who have died from ARPKD.

June 17, 2009 at 9:43 pm Leave a comment


I just found out a 16 month old baby girl with ARPKD died at the beginning of the week. I don’t have more to say besides how very sad this makes me. But more importantly how very sad for her family. And when is this disease going to stop being so sad!

June 11, 2009 at 11:06 pm 1 comment

Leaf with a raindrop

I just spoke to a family whose baby died from ARPKD on April 10th.  (the same day Matt’s brother died). They told me that in the hospital there was a sign on their door with a leaf and a raindrop that meant they were a “special” family and that people shouldn’t run into the room yelling “congratulations”. I remember when Gabe was born and was transferred to the other hospital we would get these calls from people who immediately said “congrats”, but at the time we didn’t even know if Gabe was going to make it. That was so hard for us.  There should be an etiquette on how to talk to people in these situations.

I know I’ve said this before but I am grateful for the PKD Foundation and grateful I have this outlet. I do feel this is one of the reasons the boys have ARPKD so I could help other parents who have a child with ARPKD. Matt thinks I give too much of myself to these families but I know I need to do this. I need to do this on so many levels. One is to help me deal with the boys’ diagnosis and to feel there is a purpose to their disease. And mainly to help others deal with ARPKD; be it a pregnant mom who doesn’t know where to turn, a new mom whose baby was just diagnosed with ARPKD, a mom whose older child was just diagnosed with ARPKD, or a mom who has experienced a baby dying from ARPKD. I obviously know I cannot relate to all of these situations but I will most likely know someone to refer this family to. And even if it’s not me I know that eventually these moms will find a connection with at least one other mom who can totally understand them and their feelings surrounding their experiences with ARPKD. Just like I’ve found with my friend in that southern state. If my boys did not have ARPKD I would not know her and without her in my life my life would be different.

June 11, 2009 at 10:47 pm 1 comment

Over rated

This whole work thing is really over rated. If only money didn’t matter and I didn’t really have to work. A part of me is so glad I am able to work and get out a little bit. I am proud of myself for pursuing this career, attending grad school, and working so hard for almost 14 years. But, a bigger part of me wishes I didn’t have to work and could just do the wife and mom thing. I know later in life I’ll look back and appreciate it and it won’t be hard to jump back in if and when I ever want to go back to work full time. But right now it would be nice to not have to worry about it. Not worry about the paperwork aspect, the sadness of the diagnosis of my students, the personalities of the parents, the personalities of my supervisors, the personalities of the mothers at the nursery school, the traveling from student to student, blah blah blah. But, I do like the challenge of it, do feel a sense of accomplishment when someone compliments my teaching skills, and do feel a sense of pride when I finish a report. But in general I really think this whole job thing is over rated!

But really I think I might just be having the Sunday night blues at this point. Once I finish working for the day I do feel good about it. And I am proud when people ask what I do and I say I am a teacher of children who are blind and visually impaired. I was recently talking with someone who has their PhD and works at the college level teaching students to be teachers. I always thought I would get my PhD or EdD in education but now who knows. But I would love to teach at the college level one day. She said I should send her my vitae (I think that’s a resume!) and she will see what adjunct positions are available. That would actually be frightening but really exciting.

June 7, 2009 at 9:44 pm Leave a comment


Last night we had a PKD Meeting and someone from our group who has PKD and is also an insurance agent spoke to us about insurance issues. Did you know that people with PKD who apply for life insurance are considered “substandard” as far as policy terms. You are considered “premium” if you are “healthy” and then it goes down from there. Isn’t that great that Max and Gabe are considered “substandard” as far as life insurance policies go??

What is frustrating to me is I’ve had 2 people lately tell me their doctors told them to go get tested for ADPKD because they are not sure if their children have ARPKD or ADPKD. But neither of these doctors thought to ask their patients if they had health or life insurance and neither one does. I had to stress to both of them before getting a diagnosis for themselves they really should get their insurance in order.

And I could say the say thing about us. When we asked our doctor about having Max and Nate diagnosed after Gabe was diagnosed with ARPKD he said we didn’t need to because they were symptom free but he said nothing to us about getting them a life insurance policy. It could be considered taboo to get a child a life insurance policy but I wish someone had told us that. People had talked to us about health insurance but no one mentioned life insurance. The thing is you can buy your child a type of policy that will increase when they are 18 without having to have a medical test done. And even if it is only $25,000 or $50,000 at least it’s something. Max and Gabe will never be able to apply for life insurance. Their only hope is to work for a big company who offers life insurance to all of their employees. G-d forbid anything should ever happen to them but these are things you need to plan for in your life.

Sitting around the meeting last night I felt sad. Sad that I was in a room full of people who either have PKD or have a family member with it. Sad that so many people have to suffer from PKD. And mostly sad for my boys that this is their diagnosis and that besides having to deal with the illness itself they will also always have to think about it and worry about how it will affect other aspects of their lives, such as health insurance and life insurance (among so many other things).

June 5, 2009 at 4:59 pm Leave a comment


I started seeing a new therapist 2 weeks ago and I really like her. I decided after over a year and no big changes with my psyche (i’m still crazy) I should find someone new. A good friend of mine who has a child with ARPKD recommended this therapist and I feel like after only 2 sessions I am further along than with my other therapist. My other therapist is a nice lady and occasionally a good therapist but has no boundaries and often goes off on tangents about things not related to what I am there for.  She is also in her 70’s and has some very interesting (or strange) ideas of things.  This new therapist is digging deeper into my feelings and what I need out of therapy and I what I need out of my marriage.  She gives me concrete ways of dealing with things and concrete ways of making my marriage better. When she asked me a question today and I avoided the answer she called me on it and brought me back to her original question.

I have a lot of sadness and anger surrounding Gabe’s birth. But I also have feelings of being alone in this situation. I probably had feelings of loneliness my whole life and just pushed them down the whole time. My parents are slightly emotionally detached people and don’t know how to deal with someone as emotional as me.  They just do the best they can.  It is easier for them to pretend everything is just hunky dory. As long as things look perfect on the outside then it must be perfect on the inside.  “don’t air your dirty laundry in public” or something like that.  So growing up I got very accustomed to hiding it all and keeping it all bottled up. Now I just get quiet and pretend like I don’t have a care in the world. We talked about it today and how I feel like I might be a needy friend if I talk too much to my friends and I don’t want people to look at me as though I’m crazy when I talk about the panic attacks I’m having.  It’s kind of a catch 22. Pretend like everything is fine but then bottle up more inside and have more panic attacks.  But tell people what I am thinking and either get that glassed over look or that you’re a crazy person look or that I feel so sorry for you but glad it’s not me look.  It’s hard to say what is worse.

My new therapist thinks Matt and I have some very similar feelings but deal with them in such different ways that we just butt heads all of the time. If we could both realize the other one is feeling so many of the same things then maybe we could be more empathetic with each other, less lonely, and have a better relationship.

But I’ve only had 2 sessions!! We’ll see where this leads.

June 1, 2009 at 4:33 pm 1 comment

June 2009
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