thread: And then there was 4 - Mateauz journey with Cerabal palsey

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  1. #1

    Dec 2005
    not with crazy people
    8,023

    As hard as it is...im not going to answer anyone yet...its hard enough getting these words out without crying over everyone's thoughts of me.

    oh must add..the best is still to come.,..klennex's on the ready please

  2. #2
    Registered User

    Dec 2006
    In my own private paradise
    15,272

    i've already used a fair portion of the box of kleenex mazzie!

    i understand it being difficult to answer individually - just know we're all here for you. it must be emotionally devastating to relive all of this - you have lots of people here holging your hand through every step hun

  3. #3
    Matryoshka Guest

    No words maz, just emotion....

    and somehow throughout this you found the time to make me nappy covers.... what a gift you are to this earth, your children are truly lucky to have you as their mother.

  4. #4
    Registered User

    Nov 2007
    Off with the fairies.
    4,370

    You're an amazing woman. Some much strength.
    Thank you for sharing your journey with us.

    xx

  5. #5
    Registered User

    Dec 2005
    Home of the Winery Walkabout!
    944

    Maz hun!

    I knew you needed to get this out and even now it takes me back to what you suffered.You know where I am though hun and if you just want to chat one day, just say the word.

  6. #6

    Dec 2005
    not with crazy people
    8,023

    Happy birthday

    Happy birthday

    It had been 2 days since the MRI...the results were in but as the doctor in charge had gone home no one could tell me them. I was utter frustrated and tormented.

    My birthday was on the 3rd of February. I told the doctors I didnt want to know the results on that day...I dont think I could ever celebrate the day again if I knew that it was the day our lives changed.

    My MIL and SIL's all came to help celebrate...Sammi was there and another friend..yet I really didnt feel like it was my birthday. Their ment to be special occasions....happy times not a day filled with sadness and worry. As hard as everyone tried it just didnt help. All I wanted to do was sit next to Mateauz and felt guilty that I was sitting away from him.

    After everyone had left for the day I rang Jed. Tears burned my cheeks as I heard my babies sing happy birthday to me over the phone and just longed for their little arms and warm sloppy kisses to enlope me. So you can guess this birthday I aint going ANYWERE!!!!

    I trudged up the hall to the elevator, got in and dame it got stuck! Panic set in as I dont do goo din small spaces...breath maz......breath maz.....I pressed the open door and saw that I was between floors...breath maz......breath maz.......just as I was trying to work out what I should do, the doors closed again and the elevator went down to the 1st floor. I never jumped out of an elevator so dame quick in my life and for the rest of my stay there, I never used that dame one again.

    I continued to walk frmo that elevator the 4 min walk to 'green' elevators and up to the 4th floor...were I had to press on a buzzer and wait for a nurse to let me in. 2 stood there chatting, watched me press the buzzer and continued to talk without moving. Another lady was standing with me and couldnt believe it......a doctor came up and opened the door for us......and I polietly said to the nurses that it was alright...I didnt expect them to hurt themselves......stupid woman! blah.

    I had to wait outside mateauz room as the doctors were doing their night rounds. Parents had to wait outside as the doctors discussed each child andonly the parent of the child was permitted in the room.

    My turn......I stood there not knowing what they were going to say when the head Nuro turned to me and said

    you sure have one miracle child there

    I asked what he had ment...my mouth went dry and I swear my eye's popped otu of my head. He had explained that the clot had not grown any larger but had infact started to deteriorate by itself. He still defently had brain damage but to what extent they did not know other then it being quiet sevier. There was the chanch taht mateauz could be or go blind, that his speech would be affected as most CP kids lose control over their tongue muscles, he more then likely wouldnt walk let alone crawl until the minimal age of 18 month to 2 years.....LALALA it was my birthday....I didnt want to hear this...lalalalal

    BUT ****.......No need for the drugs...no need to make THAT decission...i didnt have my childs life in my hands...he was going to live.....he could come home sooner then expected..**** my baby was going to live!!!!!

    It would have had to have been the greatest day in my life....dont get my wrong I loved my wedding day and the birth of each of my children but being told your child is going to live after what he had been through was everything and nothing.

    I rang Jed again...bawling....he thought the worst straight away fo course...hearing a looney wife on the phone not being able to get the words out due to a release of stress and frustration....I think we just both ended up crying on the phone together for 10 mins. Although Jed was over 200km away...it was a closeness to him that I had never felt.

    Our great news soon turned sour for me the next day. It was something that I didnt tell a sole...until Mateauz turn 3 months old. I couldnt take away the happiness that Jed was feeling and the chanch that we could be happy for a bit.

    The clot was quiet large and was breaking up by itself. There was a chanch that a large bit could break off and still cause damage deeper in the brain. It particals would still be floating around until the body disposed of them naturally but there was still that chanch that this could happen again.....the doctor said that when Mateauz reached 3 months that we'd be able to breath easier as the clot should have been totally disinigrated by then. I know...its easy to say I should have told someone...I just couldnt. those who know me well, know I am shocking at keeping secrets...but this is just one thing I couldnt share....I just couldnt stress the people I loved anymore so it was just easier to keep it hush and I made sure the doctor never mouthed a word of it.

    We had been given the all clear to go home...... my baby was coming home. He was still sick...still blue and small but he was coming home were I could take care of him and make him better. More research...interesting..I found some new age research that suggested that honey had blood healing qualities to it...hmmmmmm

    I rang Jed...

    What are you doing tomorrow honey...fancy driving to Melbourne????

    jed had told the kids that they were going to buy something special. He rang me as they reached the car aprk. They had no idea. I stood there...bawling my eyes out, watching my boys looking around at traffic...then Wilhelm seen me and his eyes lite up

    there's my MUMMY


    Nikolaus caught my eye and started crying as he ran for me. I never wanted to let them go. I couldnt stop crying and kissing them. My baby girl looked at me with bewildered eyes.....she was scared...had I become a stranger to her...oh no..i had gained my baby boy back and lost the connection my daughter and I had. I tried to hug her but she cried and lunged for her daddy. I was so upset but so excited to finally have them there. Finally my darling husband scoped me up and planted the biggst kiss and hug on me that it gave me butterflies and made me feel like I was home. God how I had missed his arms around me and the smell of him...even his grizzly adams beard.

    Now I had to reintroduce my children to each other again...and start along process of physio and appointments............

  7. #7
    Registered User

    Dec 2005
    5,951

    Why did I have to drink 3 glasses of wine before reading that!

    Mateauz is definitely a fighter. He may have been a small baby, but he was, and still is, a strong baby.

    You've been to absolute hell and back maz. And now you have the chance to talk about it. Good on you.

  8. #8
    Registered User
    Follow Pandora On Twitter

    Jan 2005
    cowtown
    8,276

    I made it to the last paragraph that time before I lost it. At least Im at home not at work. I really dont know how you do it Maz.