Sunday, June 20, 2010


Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Friday, June 18, 2010

I had to laugh at how true this

My reading!

Hippopotamus personalities are easy to identify. Of impressive physical bulk, they invariably attempt to disguise their size and ponderous movements. Wallowing in loose-fitting clothes or large tent dresses, their uncomfortable dimensions are the result of a compulsive eating habit. This massive bulk triggers an overwhelming hunger, and a hippo's life is centered around food and its preparation.

Most hippos never really accept themselves for who they are. Traditionally viewed as jolly fat people, they have tried every diet on the market. The hippo's heart is a cauldron of powerfully conflicting feelings and the average hippo loves to wallow in this emotional stew. It's not that a hippo gets angry more often than others, it's just that its emotion tends to be magnified to an outrageous degree. In fact, the wild variety of hippo kills more people than any other predator in Africa, including the malevolent crocodile.

Hippos carry around a great deal of unrequited anger from hurtful experiences in their youth, and although they're generally peaceful they can be aggressive when provoked. Consequently, others avoid them, further adding to their sense of alienation.

Despite this occasionally destructive behavior, there is no bigger heart beating in the animal kingdom. Hippos are loving, warm, creatures who are concerned with the emotional well-being of everyone they know.

Food acts as a salve for hippos' loneliness and alienation, and with their intimate knowledge of it they are excellent chefs and food critics. Extraordinarily fond of children they often volunteer for baby-sitting duties, finding solace in the unjudgmental nature of youth. Hippos are the first to bake cookies for the local school.

For some reason the IRS hires hippo personalities in large numbers - probably because of their aggressive and intimidating demeanor when agitated. Like the elephant personality, a hippo has a wonderfully rich voice. The deep resonance produced by their bulk, together with their desire to hide from society, makes them perfect for the role of a phone receptionist, operator, or even a phone sex actor.

The MRI is next week

We met with neonatology follow up clinic on Wednesday for Kenny. They pretty much follow his development along the way and get you connected to anyone you may need to be connected to for support. We have a lot of support in place for Kenny already. And for the standard's in BC, we have it early as well! Our OT and PT usually don't get the kids until they are closer to ONE!!! This is just due to wait lists! So we are lucky that Kristen has paved a smooth road of knowledge for me to know how to be really squeeky to get everything going so early. We have also visited with Bio-chemical Disease Control a few weeks back. They have done blood work, and are checking for anything metabolic for him. If they don't find anything there, they will also check details of his DNA. At that appointment the DR. mentioned something about his nose. All my kids have that nose. My friend when he was born mentioned his nose and how all of the kids have the same nose. Was that forshowdowing for the here and now??!! So the dr mentioned the nose. Well on Wednesday, the neonatologist, yep she mentioned the nose too! She also said that he has different ear canals too. A couple of features that may lead her to believe that there is a storage disorder. But his liver and spleen aren't swollen too. So in checking storage disorder's, it can affect the spleen, liver, and the brain! It's the blood not able to get rid of the lipids and just storing it! So I told them that he has an MRI next week so if there is any other searching that they want to do, to do it at the same time. They were pleased to hear this. Maybe they will find something?! Who know's.
So in checking his ear's they also found that there is still fluid behind his eardrums. So off to audiology we go. We were headed there anyways, just to follow-up with hearing. Not that I'm worried. We already deal with hearing loss here, so this is something that isn't new to us. Yep, the tymp's showed no movement of the eardrum, and off to the ENT!!! my day just kept getting longer and longer!! The ENT saw the fluid, so again I said can we put the tubes in his ears when he is under for the MRI. That seemed reasonable, as long as radiology didn't have a problem with it. So now till next week, and then to wait for phone calls and see!

Thursday, June 10, 2010

Follow-up visits

Kristen got to have a follow-up visit with her surgeon who did her repair surgery today. And he is so pleased that we don't need to see him for another year! He said because he CDH is right handed that the liver can sometimes really help to keep the patch and stuff in place. Now I know he mean's well, but I have heard of it still happening. But to know that we have passed the first three years without any problems, we are so lucky and blessed.

We also had a follow up with Kenny's neurosurgeon, and a head ultrasound. So the verdict is in. We will be doing something about it. His ventricles in his brain are still dialating and getting bigger, so we must operate. I'm not too happy about it, but I do know that it's the best thing for my little guy. I just really wish that he could truley get a break though! So we wait for the MRI and then we go from there. My guess is that in the next month we will have the surgery done.

I think that because of all that has happened with my kids that I have really become so hard, and cold to everything. I wanted to cry, but couldn't! I do know that it's beyond my control and I think that maybe that's why?! i don't know....but here we go again, the rollercoaster of life!

Wednesday, June 9, 2010

Does one take it personnaly??

With the socialization of Facebook, Twitter, and Blogging and of course everything between how do we take things that people do or say. It's so hard because we have closed the size of the world to a computer screen. We are meeting people all over the world that have the same/similar issues as we do with our kids. We are there to support each other in so many ways!
Now here's my situation. I have followed a blog for a while now...I do believe close to two years. I found this family on Facebook so that we could chat at a deeper level. This child was born with CDH just like Kristen was. I really enjoyed the correspondance that went back and forth between us! The ECMO, the coming home, the feeding issues, the growth etc. For some reason today I somehow realized that I hadn't seen any of the status updates from this person in awhile. So I searched them out. and sure enough, we are no longer 'friends'. I have no idea why, but that's fine. I understand as I like to 'prune' my friends list all of the time! I don't need 500 friends that I only keep on there to have 500 friends. Especially when I send a "how are you" message and hear nothing back. I don't have the time for that. So anyways, I went to check their blog, and for some reason they have changed that too, and now I cannot access there as well. Usually, I don't care. But I really felt a connection with this family. Now, please note, due to demographic's, I would probably NEVER actually meet them face to face. So how does one take this now in today's 'Facebook' way of socializing? I know realistically that I shouldn't be offended, but should I?
I am happy with the contact's and friends that I have now, but should someone let me know why they are removing me??....realistically I don't tell people when I remove them from my page who knows?

Sunday, June 6, 2010

Why is it so hard for me to keep up on updating?

I haven't quite figured out why it's so hard for me to keep up on updating this blog anymore. There are so many times I mean to do it, but I end up getting side tracked and forgetting!!! Anyways, here's the latest...I had an appointment with Bio-chemical Disease control for Kenny. Now I have had to yet be in this portion of the hospital. so this was new to me. So they took a full history of our family, essencially like a genetic counselor. They even wanted to know about any issues that the first cousin's may have had. They did an exam of Kenny, and sent him for blood work and urine. Now what they're saying is that there 'could' be a potential for a metabolic issue with him. What does this mean? Well it could be nothing, it could be an untreatable metabolic disorder, or it could be a treatable disorder! Now I don't want to get my hopes up too high that it's the last option. We have accepted who Kenny is and don't want to have to grieve the fact of who he will be in the future again! But it was very interesting! I think that the issue was the fact that his cysts on his brain are actually symetrical. Which for a brain injury is strange. But we will wait and see...well actually we will wait quite months!!! Oh well, only in the name of medicine and the fact that there could be something else wrong with him!