Happy FRIDAY March 13th in Review!

HAPPY FRIDAY THE 13th!!!  Stop hiding.  Nothing bad is going to happen unless you believe it.

Okay he's kinda scary looking... muahahahhahaha....

Truth is....

This is how I woke up.  STILL running a low grade fever and boy did I feel it today.  I know that to most people 99.1 is like - nothing.  But my NORMAL temp is 97.6 instead of 98.6.  So a temp of 99.1 is like a temp of 100.1 for me.

I suffered today with being hot and cold and hot and cold ... ended up with our huge thick comforter on the bed, and the fan on in the window.  Yep.

Speaking of window... and weather.....

I don't think it's going to happen ....  LOL

So Kaedyn was digging through some of my stuff today and....

He found this.....  it's a coin I used to carry with me always.  The penny is Kaedyn's doing, he thought I should take a picture of that too... LOL....

So I spent most of the morning just....  lost.  Hurt so much, so tired - like dog tired ... like if I closed my eyes for a moment I could sleep for a year.  My body is so worn down from fighting all this stuff at once, my immune system is totally shot.  It's just hard.  But I'm trying really hard right now to keep an eye on my health and to be more proactive with everything.  I want to get better, I want to stop being basically bed bound.  :(    I don't want the pain to win.  So anyway ....  after I finally got some energy, I started to make some more Trisomy Awareness Graphics....

This one has a white border that doesn't show .. ha ha ...

So this was awhile back ....  a couple days ago I was 563 after getting a few pets including the Black Tabby (FINALLY!) and the Spectral Tiger Cub (Whaaa! Trading Card Game pet! - I got it off the AH) .... 131 pets at level 25!!  60% of my pets are Blues (Rare) ....

So today - after getting a few new pets this week, I am up to 570 unique pets - only 30 more to go to get my 600 achievement.  136 lvl 25 pets!  Go me!  65% Rares...  Woot!

Here are the 7 new pets I got this week.

But yeah ....  I'm so sick of being sick.

Kaedyn curled up with me last night again (with Daddy already snoring away) ...  and so I turned on the same episode of Guys Grocery Games we were 7 minutes into last night when he fell asleep.  He lasted a whole 8 minutes!!!  So we've gotten a total of 15 minutes into the show!  Ha!  Oye....

Met my water goal for today!  Yip!!

Oh and my Mom posted this today and made me cry.  She doesn't normally tag me in anything except maybe a recipe here and there .... or something about/for the kids ... etc ....   she is not the huggy kissy clingy type of woman, but I know she loves me to death, even if it's not said every time we talk or see each other.  But she tagged me in this today and it literally made me cry.

Oh yeah and .....

Pity, is 100% Curable ...

 Over on my other blog:  My Unique Flowers  ... I wrote a post today that I would love to share with all of you that read this blog and not the other one.  It's important to me..  because I feel so strongly about the fact that "disabled" kids, even though they may have some extra challenges, they teach us so much... they are such blessings in our lives.  If you never go over there again to read about the medical updates on the kids, the issues, the just general health discussion that I put over there to keep it separate from here...  I would appreciate it, if you just went over there to read this one...

My world changed forever, for the better (and worse) ... in 2001. I was pregnant, and one of the only reasons I was staying in my marriage, at that time, was because of that. The changing forever, for the better, would be the baby ... and we're going to focus on that.

I remember the day I found out I was pregnant, I was certain I wasn't. CERTAIN. After 5 years of infertility and miscarriages, there was no way. But Sara (my DR's Assistant at the time) .. came in and said "Congrats, you are PREGNANT!" After asking her if she was serious, I broke down into rivers of tears. It was the worst possible moment I could have heard the news, my marriage was basically shattered. From that point, all I wanted was to see that baby's heartbeat, and to feel some sort of confirmation this wasn't going to be yet another miscarriage. That day came, and I saw his little fetal pole and the heart flickering away, strong as could be. This was it... he was going to stick...

With every ultrasound, my due date would get moved back... a few days... a week.. I was due March 17th, the ultrasound where we saw his heartbeat, they determined I was due March 22 ... If I was due March 22nd, I wouldn't have found out I was pregnant when I did, because I found out a week and a half after he was conceived. The following ultrasound, the due date based on size was much further off then that. So I took the triple screen, which lead to a chance of the baby having Downs AND Spina Bifida.. which lead to an amnio... which lead to me sitting in one of the exam rooms, with my ex-husband, my 5 year old son, and my mom .... when my DR came in and announced.....

........ Your child has something called {Mosaic Trisomy 16} ... he went on to explain it and it feel on deaf ears, I was in shock... I heard "rare genetic disorder" and "happens much in the same way that Downs does" .... and I was numb. Until I heard "Oh and by the way, it's a boy" ....

.... Pity might have been in that room, at that time, but it's hard to tell....  My DR is an awesome guy.  He never let me doubt that that baby would be born..... alive.  However, when I left the room, to numb to even cry ... there were some glances from others, I barely caught them in my tunnel of silence... but they were there... She's been fighting for another baby for so long, now THIS happens...... I could practically hear their thoughts.

What was THIS?  ... a child who would be born with some issues?  Issues I couldn't even be TOLD about because the condition is so rare?   That didn't make him any less special... that didn't make him any less wanted... it didn't make him any less LOVED!

When I got home, I dove into the internet.  Trying to find any sort of information, a light at the end of the tunnel, but I found nothing.  Not until I happened upon the website of the Disorders of Chromosome 16 Foundation.  THERE I found {HOPE} ..  not pity.  I even spoke to the president of the foundation, a woman who's child - with the same condition as mine - was the same age as my oldest son.  She sent me {HOPE} in the mail.  Along with a ton of medical documents, she send me a small, brown, kneeling and praying, TY Beanie Bear, named Hope.  I vowed that bear would be next to the baby the moment he was born.  As soon as I could get it there, it would never leave his side.  (Story is continued... )

Noah with Hope on 2-4-02

If you want to read the rest, PLEASE PLEASE go visit my other blog ...

Today, my "niece" (aka, one of my best friends little girls) turns 8 years old.  Jenna and I were due the same time, met via the "March 2002" pregnancy board, and later bonded because we both had preemies.  I knew about Noah's issues long before she even thought there was an incline of a possibility her daughter might be born early.  So I just wanted to send out a little special "HAPPY BIRTHDAY" to her :)   I hope she's having a great day, we wish we could be there.   In a few weeks, it's Noah's turn!

It's too early to be annoyed!!!

I am involved in the Disorders of Chromsome 16 foundation... due to the fact that Noah has MT16 (Mosaic Trisomy 16) ... this is an awesome site, and has been my anchor in Noah's life and especially the pregnancy.

After talking to the genetic DR at about 19 weeks pregnant... he gave Noah no hope, none. He told me "he will be so mentally and physically delayed..." .... that ... "it wouldn't be worth it" ... and he HIGHLY encouraged me to "interrupt" the pregnancy....

I'm sorry... my child did not ask to be born, nor did he ask for this genetic disorder.... why should I punish my child by killing him before even giving him a chance to live.

Yes I am Pro-Life, BUT..... that is for myself. I believe in certain situations it is up to the mother, but.... I am Pro-Life.

Anyway.... I told this DR no, and then he had the balls to look at my now ex husband and ask him ... I was thinking... it doesn't MATTER what he says........ luckily my ex agreed with me.

Anyway.... my Mom is doing a Power Point for school on Noah (it could be on any subject chosen) ... and she sent it to me asking if I would change anything - there were a few things... but then I noticed she also sent me an email with a web addy saying "Did you know about this?"

http://www.genzymegenetics.com/pdf/publications/gene_pdf_publications_mcdermet.pdf

And I hadn't know about it.. at first I thought it was cool, but then I realized that A: it paints the site in a somewhat nuteral light, although making some more negitive comments... like.... #2 in the Conclusions.... "(the stories on the website) my not provide a complete picture for prospective parents" ... they are calling the website biased.... the DOC16 ...

In a way HELL YEAH WE ARE BIASED!!! These are our children!!!

BUT........ is it fair to genetics DRs to paint a picture so grim that you lose all hope for the survival of your child!?!?!! That isn't biased at all. Based on a few medical studies, trained in thought on negitive negitive, negitive. What about the positive things????

When I said to that DR when he was telling me that Noah would be so mentally and physically delayed he would have no quality of life..... and I said "that is not necessarily true" he caught my eye line and bore his eyes into mine, and said "He will be mentally and physiclaly delayed" ...

And although, Noah IS delayed.... he was making it sound like it would be to to the point where he would be at an infant mantality forever.

Noah is mildly delayed - unless pointing out a few things he has trouble with.... with just looking at him.... you may think he's 3 because of his size ... but he is so smart and spunky and he is awsome!

And it just really annoyed me this morning... humph :(

It's all about Nathan...

I was so touched tonight (last night) ... by a YOUTUBE video called 99 Balloons. It is a story about a little boy named Eliot... one who thrived despite his Trisomy 18 diagnosis... and gave his parents 99 days of pure joy.

I was sitting here, on my laptop crying... when Noah came up to me... just on my nerves tonight because he - by 10 pm - had not gotten his PJs on... saying he "can't" ... his leg hurts ... I really discourage Noah from saying he "can't" do anything...

Because he can... he is here, he is alive, he can do ANYTHING he puts his little heart to...

Although, he is way too use to having me wait on him hand and foot ... although I really don't, I do in ways...

The second that Noah gets an unusual cough or cold, or fever, I'm starting to flip out... trying not to panic... "I want to sleep upstairs" he says... "Okay" I quickly give in because, I want to, need to, keep an eye on him - must have him with in ear shot... the second I ignore it, he's vomiting all over his bed and crying, yelling for his Mommy...

I live with constant fear that I bury... and usually, I keep it buried very deep... so deep that I forget about it... until that unusual symptom pops up, and my heart and mind start to race...

Well, tonight, I watched Eliot's video several times... I listened to his Dad talk to him, I was lucky enough to catch a glimpse of the miracle he is... to watch him grow and thrive ...

It touched my soul so deep, that it hurt...

Because I understand all too well...

And Noah was beside me... watching the "baby" on the computer screen... saying "That looks like Nathan" ... because like Eliot, Nathan had a feeding tube for what seemed like forever, but really wasn't... I kept telling Noah "that baby is like you" but he doesn't understand... he's 5 years old, he can't understand yet how special he is... all he knows is he gets a lot of attention... and too much of it from doctors lately...

It is awful when your child, at the age of 5 or younger, uses terms like IV and asking if they are going to take blood from him, insisting he has none left... and wanting to know why the DRs always hurt him...

But instead of Noah associating it with himself, he associates it with his little brother... and at the end, when the celebration of Eliot's 99 days comes... and Noah realizes that he was no longer alive.. but an angel... he says, "Nathan is okay, right?" ...

... and I just cry more...

I have 2 special needs children, 3 if you count Calahan's ADHD... lol.. but I have been honored with 2 true miracles...

I wondered what I would write about on here... what I would say, what my first post would be about.... and tonight, it came to me... do what I always do, and share Noah's story...

Touch some souls... honor who Noah is... share what a miracle can be...

As he sat next to me, watching another miracle on the computer screen... I looked at my son, grateful, and yet I mourned a child I never met, but was so happy that I learned of his story..