Monday, February 23, 2009
Posted by MyLifeMyWorld at 4:14 PM
Friday, February 20, 2009
And a space to write this out, I am in shock still and not sure where to start.
Those that know me, also know my son, my middle son Bailey that is. He was born with Oliviro Ponto Cerebellar Atrophy. Many moons ago I went on various boards/groups/websites to see if I could connect or find someone else with the same condition. I would search hours and hours and hours, days spent just trying to get someone who can relate and some anwsers. I knew it was a long shot since the doctors told me that there was noone else on record or in case history, that there was only 11 kids from Hymalasia (sp?) that were only studied to the age of 2, and that was it. They don't know why he has what he does, I was told it was either 1. fluke, or 2. A recessive gene disorder where both mine and my husbands genes combined.
Bailey was about 5 when I gave up the search for someone else, it was useless, there was nothing out there.....so I thought.
Out of the blue the other day I get an email saying that she read my post from many moons ago on a cerebellar site (Bailey is almost 12 now) and wanted to know more about him. She shared a video of her daughter, and I BAWLED, like a little baby!!! It was ridicioulous, but to think there was another person out there who can relate, whose child has the same thing mine does, whose video was an EXACT replica of my own son...
my husband put it so well...."it's like being on a deserted island thinking noone is there for years and then all of a sudden someone shows up".
I gave her my number and last night we talked, I had just finished bawling from watching her video and sent her an email when she called, within minutes. So naturally I hadn't yet composed myself and when I heard her voice, I just started crying again! This is NOT hormones, this was a huge sense of overwhelming, shock, elation and relief from a mom whose done it alone for the past 12 years never knowing from one day to the next just what to expect. Never knowing a prognosis, or what the future may bring, never having anyone to judge this condition by. I can't even describe those emotions when I realized I was not alone.
During our conversation she shared more about her daughter, I about my son and they are almost identical. Her daughter has the diagnosis of Cerebellar Hypoplasia...funny how my son was labelled something different and yet both of our kids have the same thing, not just in disability but in MRI scans (both have underdeveloped brain stems, pons, cerebellums and olives), both have almost the same visual impairments, both are Deaf and use sign, both had G-tubes to feed the first year, both were born without the suck/swallow/gag reflexes and had to learn them, both had the same balance problems, and so on and so on...both have struggled to succeed and both our children are succeeding.
I later learned that there are a number of people out there I can connect with, so I will be doing that over this weekend although they have not progressed the same as what our kids have...many are adults and can't walk, some have died...etc. etc. Even still I plan to get more info and restart my research, I just gotta see who is out there.
Want to know the real shocker???!!!???
We both were at the very same hospital for our newborns going through tests and figuring out what was wrong, just 3 (yes 3) months apart. She was there with her newborn struggling to find a diagnosis for her daughter 3months earlier, and stayed a month there....I came after with my newborn, same age, same hospital, same conditions. Strange.
To top it off and kind of got me a little frustrated was that just 3 months earlier she was there, and you think her neurologist and my neurologist talked? NOPE. I was told there was noone else, she the same.
They're the same clinic for crying out load, same hospital, same rooms, they see each other every day and I imagine or at least HOPED they were sharing information on complicated patients like ours.
And whats more, same thing with the genetic doctors, same clinic different docs, and you think THEY would hook up and chat about things trying to figure out our kids who were really a puzzle to the docs...NOPE, same thing, they have no clue, don't know why, and never seen another case like it.
Anyway, I was all willing to get together and have our kids meet, maybe out for a coffee, she; I think; was not looking for that. It's kind of sad, it would have been nice to have someone who can relate, and we could have swapped stories and shared ideas, as our kids goals are much the same, as well as their struggles, but she didn't seem like that was what she was looking for.
I asked her how come she contacted me and if she was looking for someone to connect or if she was just seeking information or just curious, and she came right out and said "No, no connecting, she was just curious". OKAY...at least she was honest. I can take a hint.
Even so, even if I never talk to her ever again, which I don't think I will, it was nice to know I'm not alone, my son is not alone, and she did give me some resources too.
What a crazy couple of days.
Posted by MyLifeMyWorld at 4:36 PM
Tuesday, February 17, 2009
On a Tuesday? I've just been checking out other people's blogs today and seeing if I can find a good one on Photography and tips and how-tos. I can't figure out how to seach for particular blogs, but I have found a couple (or should I say they found me), thank you. Anyway, I think I'm going to enroll myself in a photography class, just for general interest...we'll see, time is not on my side these days, especially evenings.
So for now does anyone got any tips for me on taking good photos? The camera I'm working with is the Sony Cybershot DSC-H50, we just got it so upgrading is not an option, LOL.
Posted by MyLifeMyWorld at 3:22 PM
Monday, February 16, 2009
Another Monday, another day of pure perfection. Just a reminder that this is a fun thing to do on Mondays introduced by McMamma at http://www.mycharmingkids.net/ where you share all the things you "didn't do" because we'll it's nice to be so perfect!
1. I have been trying to get my body back in shape by eating healthy and walking more...still some postpartum weight I'd like to loose, as well as pre-pregnancy weight too. Well, I did NOT sit down and eat a 400gram milk chocolate bar in just a few hours. I would never ever do that because it would be so damaging to my efforts thus far. I have the ultimate of self control.
2. I did NOT set up the Wii, and open up the Wii Fit for the first time and have the kids check it out. I did NOT sit on my couch and wish I could get up and do something while my kids proved once again their never ending engery. I did NOT then pack it away and pretend like I never opened it. Definately NOT me, I love exercising.
3. I did NOT want to yell or slap someone for the way they treat my daughter. Though I have the self control not to really do that, the thought NEVER crossed my mind, I don't think bad things.
4. I did NOT wish bad things to happen to someone else because they seem to have it too easy when I feel they didn't deserve it or earn it, while others suffer who deserve and have earned some good in their life and never get it. Why is that? Why do some who really do all the right things get the crappy end of the deal, while others who take advantage of things seems to fly by with ease? I did NOT wish those things because of the feelings of my own inadequacies.
5. I did NOT feel guilty for wishing for that bad thing to happen, because that would mean I made a mistake and have regrets, remember I'm perfect, I make no mistakes.
6. I did NOT lie to my sweet angel daughter that we had no money for rides in Niagara Falls simply because I didn't want to outright tell her I didn't want to WASTE the money on some silly ride she already did 2 times before.
7. I would NEVER sweep the dirt under the rug because I was in a hurry and the house was having a showing at 4pm today on FAMILY DAY just after we got back from Niagara. I would NEVER EVER do that, tisk tisk. **Though I did clean it up right after the showing.
8. I NEVER considered saying No to a showing today because I'm sick and tired after just over two weeks of living in a museum and wanted a day to just relax.
9. I of course DID NOT sit acrossed the street at a park with my family spying on the people who came to see the house today. Thankfully it was a nice day and the kids liked going to the park. But I would NEVER spy.
10. I did NOT think about calling in sick tommorrow because it seems that I need a vacation after my vacation...(even though my vacation was only 1 day...lol)
A pretty good week of all the things I NEVER did....what DIDN'T you do?
Posted by MyLifeMyWorld at 7:11 PM
Saturday, February 14, 2009
Is just a commercial holiday where men are forced to go out and buy their significant other some overpriced bouquet of flowers and a shit load of chocolate most of us women don't really need. Um, yeah, can you tell I really don't get the Valentines Day thing? Christmas, I'm in, but Valentines?
Maybe it's because I'm not really a "romantic", sure I have my moments, but really that depends on the mood and time of month and well, how tired I am, but really I"m not a mushy lovely dovey kind of person, have never been. (With my kids it's very different though).
I just don't get the whole Valentines Day thing....I mean why should there be one day of the year put aside where spouses or significant others go out of their way to show how much they love the other? Shouldn't that be a daily occurance? Why does it take a marked holiday on the calendar for one to buy the other flowers, jewelery, or go out on a date? Shouldn't that come from ones heart on the desire to do so rather than because it's an obligation due to the date on the calendar?
To me Valentines Day is just an excuse for flower, chocolate and jewelery stores to rack up their prices, and restaurants to make their dig in your wallet, in an attempt to put aside one day of "love". Love is not one day of the year, but rather should be every day and should be shown regularly.
We in our marriage/house do not really celebrate Valentines, can you tell? Sure hubby got me a box of chocolates and a dollar store card, and I got him a dollar store card too, but that's the extent of it, no overpriced dinner out...though I did consider getting McDonalds tonight.
For us the more important dates are the ones WE set, like our anniversary....will be 9 years this coming August and that's a special day and one where we celebrate our marriage and love and committment for each other. Other than that, each day is a celebration, and date night, flowers and gifts is not just for once a year but when we have the opportunity and desire to give.
I respect that many people DO celebrate Valentines, so I do want to wish you all a Happy Valentines, I do hope that it was everything you wanted it to be. What's more, HAPPY FAMILY DAY!!!!, I just love this new holiday and wish that everyone takes that day and spends it with their loved ones and enjoys this new holiday together, as a family.
Posted by MyLifeMyWorld at 5:35 PM
Thursday, February 12, 2009
I just found these new sites and great ideas from other fellow bloggers and thought I would share....I haven't tried them out yet but LOVE the ideas and am dying to get right in there and order.
Below are the great links and products I found...thanks fellow bloggers
1. This first one you can take your picture and turn them into REAL art...they look awesome and I'm planning to do this as soon as I find the "perfect set of pics". The price is not all that bad either, when you consider what art costs.
2. The second is turning your blog, like this one, into a real bookstore quality book. I really like this idea and plan to do that to this blog....again the price is reasonable and I haven't tried it but it looks pretty easy to use too. Changing blogs into books for your reference is called "slurping". Interesting names they come up with eh? Blogging, slurping...what will be next.
On a side note, it's been a good day, not much new except I got something in the works and will share in a day or two....it's going to be soooo good!
Posted by MyLifeMyWorld at 6:53 PM
Tuesday, February 10, 2009
Posted by MyLifeMyWorld at 1:49 PM
Sunday, February 8, 2009
Today marks the first edition of "Not Me! Monday". Basically it's a fun thing to share about all the things I did NOT do this week because well, I'm perfect! You can read others "Not Me" days by going to the list at http://www.mycharmingkids.net/, so let's give it a try.
1. I did NOT postphone getting one of my side signal lights fixed on the bus this week because that would mean I'm not an eager beaver at work. I did NOT wait until Thursday even though it went out on Monday, to get it fixed because I was tired of taking my personal time to go to the garage. NOT ME, I'm a perfect employee!!
2. I did NOT ignore the mess of garbage on the floor of my bus on Wednesday either, because I sweep it EVERYDAY like I'm suppose to.
3. I would never yell at my husband especially over how to parent our teenager and dealing with discipline. Afterall, I am the perfect wife in the perfect marriage and NEVER raise my voice.
4. I am always on top of the bills, and NEVER would ignore paying them, out of laziness, afterall those 1.50 late payment charges add up, and I am very frugal.
5. I of course NEVER swear, most especially when a car runs a red light and almost hits me. NOT ME, and NEVER in front of my daughter either. I am a perfect mother and would NEVER color her language like that.
6. I NEVER EVER would go over to a friends house on Saturday night, drink way too much (which isn't a huge amount considering I haven't drank in 3 years) and become quite inebriated . Oh NO, NOT ME, because I am a perfect party guest and am always in control.
7. By midnight, I was NOT hugging my friends toilet for dear life, DEFINATELY NOT ME! because that would make me a huge party pooper, and well, I'm perfect and can always handle my booze.
8. I did NOT take a taxi home, strip off my coat and shoes and spend the wee hours of Sunday morning caressing my own toilet while my husband held back my hair and laughed at me. I would NEVER do that either, that would be so immature, and I am the defination of mature.
9. I was NOT reminded of WHY I don't drink often and WHY it's been 3 years since I desired more than the occasional glass of wine. I was NOT reminded of this because that would mean I had forgotten and naturally I have the perfect memory and would NEVER need reminders.
So that was my week of all the things I did NOT do! What didn't you do?
Posted by MyLifeMyWorld at 4:10 PM
Friday, February 6, 2009
Today was an awesome day for me, I'm feeling great and here's why:
1. This morning S and I chatted on WebCam....I'm so glad she got that for me for xmas, it's so fun to see who your talking to and chat it up. Oh and also of course to see the bean in mommas arms.
2. I had a showing today and it was a real person...lol, not just a real estate agent. That makes 3 showings (first one being just a real estate agent), 2 actual buyers come through. Open house is tommorrow and apparently there is a showing during that time too!
3. Family is doing awesome at keeping the house museum clean....big step for 3 kids and a messy husband.
4. Work went off without a hitch
5. I got my blog revamped and I love it
6. I'm wearing my pre-pregnancy clothes! I'm not a real jean lover by far, my jeans are the stretchy kind, and I do like them. It was nice to put them on and have them fit.
7. It's Friday...need I say more?
8. The weather outside is SUNNY! and much warmer than Thursday, and will be warmer tommorrow. +6!! I hate winter, makes me sad and cranky...I'm like the energizer bunny whose batteries are running very very low during the cold, but today with the sun and the warmth, it's like someone just changed my batteries! I was bouncing and dancing just in a real feel good mood!
Need I say more? Hope all of your Fridays went off just as well as mine!!!
Posted by MyLifeMyWorld at 3:30 PM