And then there was 4 - Mateauz journey with Cerabal palsey

MAZ - i wish i could erase your mum's comments from your memory - god that must cut DEEP into your soul, i cannot believe she said that to you, or even thought it. My mum is that blunt also. really hurts.

Do people actually say to you that they think YOU caused M and W's circumstances? Where on earth do they get that flawed logic from? As if!! i cannot believe anyone would be that cruel - i mean, i know people can be terribly thoughtless, but it's just beyond me how anyone could believe that dribble.

we all know you would do anything for your darlings, we believe in you. anyone else who can't see that (and it's so obvious), they can go jump.

:

---

Maz, have you ever thought that maybe Mateuz and Wilhelm too, were given to you because you would be the best mum to nurture them and love them, despite or maybe because of their difficulties?

---

Truer words have never been spoken.

My grandmother was a very spiritual person and told me that not only do we choose our lives paths before we enter this world, but we also choose our family and the roll that they play. Your children chose you because they knew you would be the best person to help them through this life lesson. You are their guardian Angel walking this earth.

I have cried more reading your story than I have in a long time. Both through the pain and heartache as well as the joy of hearing that Mateuz would survive. Words can not thankyou enough for sharing your story, it has touched me greatly.

Big big :hug: to your entire family.

Maz, its getting sooo close to Mateuz's first birthday, and you have been reliving all the past year in this brilliant de-brief.

So I wanted to TELL you to remember to be extra, extra kind to yourself. Leave the bloody overlocker alone for a night and have a glass of wine and a bath instead! Keep on crying and letting it all out. You can get really productive with crying too. When I'm reliving stuff from deep down, I try to take deep breaths in and on the OUT breath I visualise black sand exiting from my lungs and the next breath (sob) a clear blue one. Yeah I'm nuts but it works for me.....

Love ya chick xoxoxoxo

The waiting game...

Lucky for us...we have had the most wonderful person guiding me through this. Our physio is the most caring and loving lady. We did have a young girl who was also wonderful but at times I felt like she wanted him to be doing more then what he was at his age.

He's doing so well BUT he should be aiming for this (something that was 2 months ahead)

I head to keep reminding her that he was just a baby and not at that stage but her heart was so in the right place.

Our pead wanted to check the progress of Mateauz brain and what damage was visable. An u/s was booked for the first saturday in May...**** we hd so much trouble trying to get it organised. I tried to get one done at the hospital and explained that I had to bring as toddler with me...well the receptionist said there was no way I could do that and that I had to find a babysiter..WTF. I promptly rang her manager and our pead. I was later to find out that she was fired due to her lack of customer empathy. I booked into an imaging place here in Shepparton on a saturday as then it was just Mateauz and I. We turned up and waited almost an hour only for the radio-ologist to say she couldnt do the scan as no one was qualified enough to do it. We left, I was peeved but what was I to do. I tried the hospital again to get a lovely NEW receptionist who booked me in as soon as I mentioned our Pead's name.

At 11.30am july 17th Mateauz finally had his brain u/s. Of course the technician had to get his big headed superior to come in and big note himself. But it was done and in time for our next appointment with our Pead on the 22nd.

Peter was fantastic....he said there was no sign of brain damage at all..**** what...all those months of hurt, pain and tears for nothing??? NO!!! I couldnt believe it...i felt like I was in a dream. Peter said that there was research showing that stem cells were passed on through breast milk and with a smile he said

So good thing you pushed using your bb's girly

I could have friggen kissed him. Up the rollercoaster we go...weeeeee I was so happy that I had pushed to BF...so happy that I had done all the hard work, yet upset that my little man had to go through it at the same time. Mateauz still wasn't doing his milestones but hey his brain was normal....I spoke to a family friend who was a radio-ologist who quickly put my good news back into prospective.....u/s aren't as effective in picking up dead brain tissue as MRI's were...Dame it! Down the roller coaster we go again.

Everything has been running smoothly for a few months...Mateauz started to roll...then he was commando crawling like a trooper, then **** he pulled himself up to stand...he now run's holding onto the wall or couch for support.

there was still that nagging in me...that knoring right down deep..the one you shove behind the cupboard and yes its come out to bite once again.

The week off Nikoalus baptism I noticed that Mateauz was sleeping 16 hours through at night then 5 hours through the day and back down for another 14 -16 hours at night. He wasnt very well I was soon to find out. He was a bit puffy in his eyes and snotty. I thought nothing of it...until I went to get him out of his cot on the day of Nikolaus' baptism and his eye has the size of a golf ball. His left hand side of his face had dropped and that stupid lump was back in my throat. I cried an cired.

**** he's having relapses....no maz they said he couldnt relapse....**** what happened if he had another stroke...why didnt i hear him......why did I let him get sick.....

I rang the doctor who put us straight in. Viral infection....yay but as the doctor explained when a CP kid gets sick they get really sleepy to try to 'fix' the problem internally. As the alive part of his brain is trying to get better, its not concentrating on helping on doing the dead section's bits so his CP really kicks in. His left arm was stif and he held it very close to his body...his hand was clutched shut into a fist and his leg was awkwardly turning out. I totally freaked out. I should have been able to prevent this...how could I let this happen to him.

Our physio yet again saved the day for me. She showed me the movements to do to help with the stifness in his arm....to help him make his hand flat when ever I notice it scrunched up....as for his leg...we might need to get him a brace for that yet...we're hoping that the walker Santa bought him for Christmas might help him with his balance. Its all about training the brain to doing the right thing..its exhausting but if it helps him live close to a normal life then its worth it. Ive also taken to putting a right footed shoe on his left to help guide that foot back in....and guess what...its working

I suppose I thought we were invinvable after doing so well for those few months....Mateauz getting sick made me reopen my eyes and realise that yes he is a sick little boy, and I have to be extra carefull about the choices we help him make in his life so he can lead the best quality for him.

We see our Pead on feb 13th next year...when we will be booking another MRI. He's almost at the age now were all the professions have said this is when you'll se what damage is really there. So in one part I am so happy that my little man is turing one...he almost didnt make it here but in the other sence I am so scared shiatless to see if he do or doesnt progress. Its so hard to see his beautiful big eyes smiling at me whe I know that he is going to have pain the rest of his life that I just cant take away.

I just thank god that my little guy can still smile, be a happy little boy other wise and say those magic words every mum wants to hear

'mama'

aw Maz he's just gorgeous, your kids are so lucky to have you for their mum.
:hug:

Maz, I totally agree - your kids are so lucky to have you in their life. You are an amazing woman filled with such strength. I pray and hope that Mateauz's next MRI is clear. I hope he has a fnatastic 1st Birthday! What a year for you and your family, I hope the future is bright and filled with love and happiness.

thank you maz

you put alot of things into perspective

Hi - I'm just a newbie here but I really appreciated reading your story. I have mild CP myself (affects my left side). I was only diagnosed when I was over a year old but went through regular physio, operations etc, etc. My parents didn't know if I would walk or go to a "normal" school. I took my first steps at age 2. I am now a qualified lawyer. Just over 2 years ago I met my hubbie and on 2 November this year we were married. Now we are about to start our own TTC journey. If you ever want to discuss things feel free to contact me. Adi

Maz! You keep so much to your self lady! All that worry! Your little boy sounds like he is doing fabulously! I hope all goes well on the 22nd and you have more rejoycing to do

Hi Maz
I just wanted to say how much I respect and admire you.
I'm not far from RCH, so if there's ever anything I can do to help don't hesitate to let me know.
Take care

Maz, I read your journey last night and I just could not post a reply straight away. Infact I still can't find the right words. Just know that if Mateauz has half the determination of his mummy then he is destined to be "Great".

You are truely amazing thanks for sharing

Maz hun, you and Mateauz have both done such a great job to get to this stage. I have every hope that the MRI will be good news.

You have done such a wonderful job. Thank you so much for sharing your story. I can't believe how much I cried reading it! I can only imagine the tears you have shed over this past year.

Thank you for sharing Maz. It makes me feel so lucky to have 3 healthy boys, and at the same time my heart aches for what you and your family have gone through.
You are all so strong!

A Very Special Happy Birthday to Mateauz!! This little man has been in many of my prayers this year.

:hug: Maz, a testament to how amazing you are.

happy birthday baby boy!!!!

Happy bday Mat!

Happy Birthday Mateauz!!!
Many Blessings to you as your embark on your second year of life!!!

Happy 1st Birthday to Mateauz, and congratulations on all you've done this year Maz, to get your little boy to his birthday as happy and healthy as he is!

Happy birthday special little man...

and huge huge hugs to you Maz your wonderful!

Its been an extremely emotional day for me. I sat here with Mateauz on my lap at 10am thinking back to this time last year were I was in theater just before our rollercoaster started.

It feels like we have been celbrating every day since satruday

We had many beautiful people who were there for us here, last saturday to help not just celebrate Mateauz birthday..but celebrate the love, support, strength and friendship they gave us, unknowingly that was worth more then any million dollar bank account to me.

Our super hero has had such a wonderful day so far...I cant help but watch his beautiful face smile and take in everthing and everyone around him. We had 2 more close friends here today who drove miles to share just a few hours with him. He blessed us with his first steps and its so hard not to cry infront of other people. I hold my breath everytime he lets go of something and see his foot slowly stepping forward.

I have to thank everyone who has left their thoughts, shed tears, said prays for us in this thread and over the last year. It has been an extremely testing time for me personally time for me on so many levels...I say a little thanks every night when I go to bed to someone, I dont know who but I just say thank you for giving me the best life changing gift of them all. With out him I would know the patients I have gained, the strength I have within, the voice I thought I never had to speak what I feel and the monumental love I have that grows more and more each day for every single one of my children...and especially my husband. I cant even imagine thinking about him not being here with me let alone the children we have made with love together.

So Mateauz honey...mama wishes you the best birthday present in the world honey..the gift of being able to walk without pain, 2 love life as much as you already do and to always smile that ever beautiful smile.

Thank you honey...for making our lives complete.

Happy Birthday Mateauz....you sure are one very brave fighter!

Maz, you are such a gifted writer!

Happy birthday Mateauz. May the sun always shine in your eyes.

Wishing Mateauz a really happy birthday.

I've only just read this thread (don't get on here too much these days) and your journey has been so hard, but you have been such a strong lady, a true inspiration and the best mummy a child could ask for. Wishing you all the best for your continued journey with Mateauz and your other darlings.

Julie x

Happy Birthday Mateauz!!!!!!

Maz, What a fantastic day for everyone. To think about Mateauz's achievments over the last twelve months then to top it off with walking independently, his skills can only get better and better every day. What a clever little man you have.

Sjl

Happy birthday for yesterday Mateauz!

Maz - I have just read this post from beginning to end today, and I just wanted to tell you that I think you're amazing :hug:

Maz - I sat here and have read through this through the tears. :hug: to you and your beautiful family. Mateauz truly is a gift to you all and you are just so amazing hun.

:kissing: :hug:

Maz Hun I have been offline for WAY too long. I was thinking about Mat all day on his birthday, but have just been so busy and needed to get things done.

You are amazing hun. February will bring some good news for you. Mat will WALK into the paed's office. Hun he is taking steps earlier than many catalogue kids!!! You go Mat!!!!

If you are having one of those horrid blaming yourself moments, or 'I should have noticed' moments, TELL SOMEONE!!! You do not need to shoulder that burden hun. We are here to help. I know I notice things and fob them off as my imagination but I am making sure I mention what I notice now.

FYI hun, Em will see the DAP in Feb too ;) I hope they can figure some things out for both of us!!

maz,
you are truly a amazing women...strong...loving and always there.
mat - you are a amazing little boy...and a inspiration...a true fighter.
all my love rach xxxx

You story shows just how strong a mother's love can be.

You are amazing.
Lv spring

Thank you for sharing Maz. I have smiled through tears reading your story, such love and strength!

I'm not a terribly emotional person, but as soon as you were talking about missing your other kids while in hossy with Mat - I began to cry and I'm still bawling like a goose!

I suddenly feel very VERY blessed to have never had that scary 'will my son live' moment. In comparison, I barely had a ripple in the road compared to your rollercoaster. Thank you for putting life in perspective.

I hope you'll share this story with the Breastfeeding association as it is so well written they may like to put it in their magazine so you can inspire even more mothers and nursing staff.

Words can't describe the awe I feel for your journey and how determined you've been. Not even to do the best for your kids, but to do this post.

We thank you Maz. :clap:

ONE YEAR AGO

I sat in my brothers car feeling overtired, numb and like I was in a tv commerical. My brother was trying to be chatty (as he does when he's nervous) and I was a silent cold fish. All I could do was look out the window, staring into the sky behind us to see if I would see a glimps of the airplane that was taking my baby boy to the Mercy.

So much had happened the in the last 12 hours. I remember sitting in the gutter out the front of the emergency department, ringing Sam and baaling my eyes out. Dont ask me what i said...I just remember how calming her voice was and how it felt like a warm light compared to the cold I was feeling.

Yes...today one year ago our lives changed for ever. My beautiful baby boy was about to go through the most horendous time of his life and I couldnt stop the landslide coming.

The friday before hand Sammi and Trev (along with Caleb) came up to our place. Sammi took the most beautiful photo's of my little man....I never realised how much those pics would mean to me until after the dust had settled. I look at those pics and wondered how much pain he was suffering on that day. He was crying so much and I kept saying to Sammi...look at how blue he looks....Im pretty sure that you can see how blue he was in some of the pics. I also worry that I made him upset when taking the pics. But there's only so much cotton wool in the world isnt there.

So this morning I was in the lounge and in bounds my little red head...He didnt see me at first...I just whispered his name...Mateauz...and he instantly turned around and ran for me with his arms out and his big cheese eating grin on his devine face.

Today's the day I will reflect on the last year.....I'll thank who ever I can in my mind for the comfort, the support and love that we had over the last 12 months.

Thank my hubby for being not only a pain in the butt but for being my strength and tower of support.

Thank my gorgeous Nikolaus who has not only had to deal with an autistic brother but now a baby with so many different needs that he puts his own aside and helps when he can. Thank him for putting up with a maniac mother who flips at the worst times and yet he still says nothing. Thank him for his love and his midnight cuddles and thank him for being so patient to us all.

Thank my devilish Wilhem who loves his 'little guy' to pieces and tried his best to be patient with him. Thank him for being as beautiful in nature as his daddy is and for reminding his big brother what a pain he can be.

Thank my darling little Vyolett who chases 'teauz' and gets what he wants...showers him with kisses and comes and gives her 'mama' a cuddle when she is crying. Thank her for being a mini me..in so many ways and for making my life interesting on so many levels.

And thank you to my little Mateauz. My little miracle...you were the only baby we didnt intentional 'plan' you were our surprise baby who has bought so many positives into our home and hearts. Yourve taught me to be patient...to see things on the flip side.....to see the bigger picture....to strive for the impossible..to believe in myself. Although your only a year old...you have given me so much more then you have realised.

I live for your smile, your hugs,the sound of your voice......the feel of you. If I had to relive the last 18 months, as hard, as scarey and as life threatening as they were, I wouldn't change a thing.

I love you sunshine boy.......more then words can say.

Oh hun, you've come such long way on this journey. You've grown stronger and so has the rest of the family. He is a miracle in more ways than one and hes so lucky to have so much love around him..
Enjoy today and reflect on the good times xoxoxoxox

Maz - you're a truly talented writer.

Thank you ever so much for sharing your story. I am so glad you found it within yourself to do this. You are very courageous.

Maz - you have written your story so beautifully - you are an inspiration to us all

oh Maz, that is just beautiful. Today must be such an emotional day for you. Remember we are all thinking of you.
And I want to say also that Sammi, you are such a wonderful, caring person. Maz speaks so highly of you. I am so glad you two have each other :grouphug:

I hope one day you give this to the kids to read when they're older and can understand it. I'm sure they know how you feel towards them, but if there is ever any doubt, this will put their mind at ease. You are such a brilliant mother, you should be very proud.

Now go give each and every one of them a big kiss and cuddle! :D

:cry: that's beautifully worded Maz

simply beautiful Maz....
i think i have someting in my eyes....*very dusty here..sniff sniff

There is nothing more to say than :comfort: You know we are here for you babe.