And then there was 4 - Mateauz journey with Cerabal palsey

Gee i just read it all at once... My throat has the hugest lump in it and i just think that you are the most wonderful,strong mother. I havnt got anything else to say...im speachless for once..except thankgod your still hear mateauz.

Maz hun...hugs to you and your family for all you have gone through.

Maz i just read your journey and some stages i couldnt even see through my fogged up glasses from the tears in my eyes. You are an amazing person and you have a wonderful family and a beautiful little man. :hug::hug:

Maz, I've said it before and I'll say it again, you definately are wonderwoman.
I remember at the time of all this happening thinking how terrible it was but reading this and seeing in words just what you were going thru has me in tears and lost for words.
I think Mat has alot of you in him, he is very strong and such a fighter.

Speechless and crying my eyes out. Thank you Maz. Thank you for sharing. I can't begin to imagine what you went through. But your strength, determination and pure guts are beyond inspiration. Although I have read your journey over the last 10 months, to read it in one like this is such a gift.

Wow Maz, thankyou for sharing is all I can say.....

maz iam sat here with tears pouring down my face. what a amazing woman you are...and what a amazing family you have...all my love rach xxxx

a strong woman you are
a strong woman ul always be
the love you have for that child
well all of that is inspiration for me
thankyou

maz you are a a wonderful mum! Your children are so lucky to have someone like you. Jed must be so proud to call you his wife!
Thankyou for sharing. Mateauz has a beautiful family :hug:

There will be more girls...Im just building up the courgage to write it as I find it harder then what Ive already posted

Thank you all for your encouraging words.

I dont consider my self special, an inspiration a wonder mum. I have only done what each and everyone of you would have done for your child. Ive only done what ive been placed on this earth to do...be a mum and try my hardest at doing it.

My children are my inspiration...my means of life, my reason for my existance. I am the lucky one to have them in my life. Each and everyone of them imspire my every day.

Will get back to this in a few days...as I said it only gets better from here so make sure you get the tissues ready agani soon girls :)

thank you all again so much

You ARE secial Maz. AND an inspiration to us all. xxxxxx

I agrree with Falguni hun - you are special. any of us would go to hell and back for our children - no denying that - but to do so while continuing to be so supportive of everyone else the way you have from when Matty went home, to keep your sense of humour, to have kept working as well as being a SAHM, and to NOT fall apart (yes, you've had your bad days, but on the whole, you've kept on going) - THAT is what makes you an inspiration to the rest of us!

stop trying to be humble - it doesn't work for you! we KNOW what you've achieved in the past year - even without knowing the full story of Mat's journey - and finding out the detail just leaves some of us in even more awe of what you went through and what you've achieved hun

Hun take your time. You have been through SO much and it does take time to process all of the emotions that come with it.

You have been an inspiration to me, and have taught me through your posts and the way you do things how much you are a special woman. Special needs children are given to Very special mums. There are many of us that would not cope as well as you have with everything that has been thrown at you, even though you simply got on and did what you needed to do. We love you Maz.

Armed with my tissue box I am posting to subscribe. Gotta read more of your incredible journey. Thanks for sharing and take yr time getting it all down. I can't imagine what it's like to process it all again... but sure it's healing. HUGS

Maz,
I have been crying through your story. I hope Mateauz is as good as can be.

Tissues are ready and waiting for your next chapter.

Sjl

I have finally got the time to give this the attention that it deserves ;)

I feel like I am reliving this with you all over again :hug: and I can't believe it is coming up to a year!

Mateauz has come ahead in leaps and bounds due to your love and dedication to him. I'm sure that as he grows up he will make you proud every day :D

Had a long and emotional day and so much has been palying on my mind...time to get back to our story then...............


........my fingers wouldnt stop brushing through Nikolaus hair in the elevator...I know he likes it when I do this...its one of those mother/son things...a security thing..so he just smiles up at me and I start that gulpy cry. Wilhelm by this stage has decided to superglue himself to my leg and Vy is still sitting in the pram...tranfixed to me....I can see her eyes trying to take in wether im staying this time or not.

We get to the big glass doors and the nurse lets us in with a wink...I really couldnt take the smile from my face. At the door to the room I see 2 of the other mums looking at me a bit bewildered...I feel guilty because we're going home and they still have to stay. All of us do the hand washing routine (something that has since this time stayed with me in a big way - will explain later) and then I let my children, my babies....Jed's and my creations catch each other in their own breaths.
Nikolaus one one side, Wilhelm on the other...Vyolett straining her neck to look in at her 'teaz'.

Hello baby brother, we missed you

I hear Wilhelm say

your coming home so we can play

Tears are again streaming down my face...and as Jed puts Mateauz in the back seat of the pram...I feel this little tug at my leg. I look down to find my daughter searching my eyes for me.

Mama


is all she whispered as I scooped her up and hugged her....

me mama, me mama

Our bond was mending.

Leaving the ward was a bittersweet moment. I felt joyas, releaved..my baby was better...yet there were 2 other mothers in there that were still waiting for their parade, their day. In the short time our sadness had bought us together...and yet I never got their names nor addresses....maybe its one of those times when it wasnt needed...just the comfort of knowing someone is there with no ties.

Driving home seemed to take forever. I remember the feeling of leaving the hospital carpark more then anything...that excited gitty feeling like when your 16 and you first hold hands with the guy your 'going out with'. Mateauz slept while his big brother Nikolaus held the side of his capsule. He never let it go until we stoped about 1/2 an hour from home because he needed a feed and a change....OMG it was so good to put a cloth nappy back on him...I know that many people would think im nuts but it was almost liberating...having used disposables the whole time in hospital due to proticol it was another rope that bound us down that had been cut. That feed in the car was one memory I will have one my death bed...here I was in the front seat, BFing Mateauz and having 3 little kids...leaning over, watching, stroking, kissing their little brother and giggling the whole time. It was the medicine that we needed....it was magic.

Little did I know that our new life was only just beginning.

Ow I had the most lovelyyyyy MCHN (note the sarcasim). She kept referring to him as Premmi and the sick baby. I needed to feed him more...needed to do this....wasnt doing that...your daughter isnt talking enough...make her do this...make her do that....put him on formula.... His left side is still very weak...I really needed support, not to continuously have my parenting skills put down. I reported her to her superior and a day later she had a heartache in the shower and died...ah see karma does come back to bite.

We began seeing the same early ed team that I had with Wilhelm. We started intense physio on day 3 of being home. They told me the exercises, showed me how to do them, and them knowing me...let me to it until they saw me a week later. That first week was so hard.....I knew it was hurting him...it tired him out but I had to keep going. I learnt to massage him with oil before we started so that he was warmed up. He'd giggle when I massaged the inside of this thigh...just like his dad lol. We'd stretch his legs and his arms, do upper and lower body twist, pull ups, belly time and every time he cried I would just have tears streaming down my face. I didnt want to hurt my baby...I wanted to enjoy him, cuddle him and keep him safe, soft and yes dame it have him in cotton wool..why did I have to put him through this 4 times a day...it wasnt fare..I was missing out on having a new born, a baby, he was missing out on it to!

I really struggles with BF at these low points. I felt like I had let him down in so many ways that I owed him Breast milk...I owed him everything and if it killed me he was BF. I started to rebond with him by taking in for a shower with me and then getting him to feed in there...we were both relaxed, it was soothing and I could forget the outside noises in the mean time. Vyolett would also join us, so it was very comforting for her , she would curl up on my lap, hugging her 'teaz' which i really believe was the foundations of the strong bond they have today.

Everyone around me said that I was calm, and couldnt believe how well i was coping...hmmm yeah they werent here of a night time though were they.
For those first few months.....until Mateauz was about 3 1/2 months, I either lay in bed awake or I sat by his bassinet to scared to move, sleep let alone breath incase that 'night' repeated itself again. I just couldnt bring myself to leave his side...he was either in his bassinet next to my side of the bed or in bed next to me, were I would watch him the whole time. Every time we had a sound, I jumped..i just couldnt stop myself...it became a compulsion..as to with the hand washing...scared of germs, scared that I would make Mateauz sick if my hands werent clean enough...I began washing them 3 - 4 times in a row..and scrubbing them. Jed never nagged me about it, he knew I had to do it and just left me be. It was later that he stepped in and with gentle gloves guided me and helped me over come these fears.

We had an appointment with the Nuro surgeon and heamotologist on the thrusday before easter that was very interesting...but I'll leave that for the next post

I read these and I cry from start to finish and DP always asks ' why? '. For me its as simple as 'Ill never take my time with my son for granted. It reminds me how special a mothers love for her child is and how strong this love can make us.'
Your amazing Maz cz no matter how bad it was/ is at night you have survived it and never let your kids down, that makes you an inspiring mum.

Wow Maz! I missed all this when it was happening and only heard about it afterwards. I am sitting here tears streaming down my face... sobbing. Your story is one that is going to help so many people through... thank you so much for writing all this down.

Waiting anxiously for your next installment.

Maz,
I am truly honored that you have shared this story with us. Your love & devotion for you kids just shines through. It seems that even in your darkest moments you are looking for the light even it is just a tiny speck. Thankyou & as has already been said, special babies are given to Very Special mums. It's at moments like this that I realise how lucky I am & that we shouldn't take anything for granted.

BTW I always wondered how you pronounce Mateauz? & no replying until you are finished ;)

maz you keep having me in tears!

I finally have found the time to grab a cuppa (or 3) and re-read every little detail again from the start. I'll more than likely do this another few times as its hard to read properly through the tears. I had no idea Maz that this is his story, you are one strong mummy and should be proud of that.

The bond within your family shines through your words.

More :hug: to you hun. This is an amazing story that you have lived. You know the saying - God only gives us what we can handle - well all I can say is how lucky your children are to have you hun, because you really are a rarity to have such strength to get through all of this. :hug:

maz,
im in tears again xxx

Happy Easter

It took me 2 weeks of back and forth phone calls with the staff between the Nuro and the Heamotologist to get appintments on the same day.

The thrusday before easter. We had arranged for Nikolaus to spend the night at his friends and Wilhelm came with us. It was hot, I was nervous and my gutt was in the biggest knot.

Jed's parents meet us at the hospital so they could look after Wilhelm atleast while we went to the appointments. I was so thankful to them both for being there...as hard as it was for them, I was reliving their foot steps as their youngest has CP also due to her birth (different thread all together).

As soon as I saw the big Glass windows at the entrance my mouth went dry and I felt my breath be taken away. That horrible monkey on my back feeling came crawling into my head and the fear I felt back in Jan-Feb. I dont think its something that leaves you entirely. The unknown, like reaching out in the dark and being scared of what your going to clamp onto. I tend to go 100 miles a min when im anxious (just ask my overlocker lol) so Iwas walking way ahead of jed and already snapping his head of. He just, as usual, gently took my hand and smiled at me and told me that this time I wasnt alone, he was hear with me and I could cry. His words didnt sink in until we were driving home but I think they were there when the doctor's spoke to me.

Then the smell of the place hit me. There's a takeaway shop that usees hot oil...so imagine that, along with MacCaffe and Macca's itself and the chaemical's used to clean the place. Goosebumps ran up and down my arms and I swear the entire time we were there....I was cold and numb



First appointment was at 11am - the heamotologist. We waited in the Childrens cancer waiting room. All around me were these darling little children, in pain and so sick but with the biggest smiles on their faces. I kept thinking what are we doing here...these kids are sick..not ours.....we waited some more....11.30am a doctor came out and looked about the waiting room, caught my eye then turned around and went back to his office. By 12am I had had enough. Mateauz was ready for a feed and Vy was getting annoyed and hungry. I asked the receoptionist how much longer and she looked at me puzzled. Seems our 'specialist' had come out and seen no one waiting so he went home for the day....so there you go...I was no-one, my child was no-one. We finally saw his side kick who didnt even look at Mateauz, let alone touch him until we were in the hallway leaving. The whole appointment was the assistant conveying with the 'specialist' on the phone. In the end I ended up telling them what a waste of time it was and he told me I shouldnt be like that! **** are you kidding. My child has blood clotting issues are your fannying me around like its no big deal. I told him dont bother about making another appointment because we will not be back....he tried to talking to me and I just told him to can it and leave us alone...we'd been through enough...I was to upset about being mucked around and my little man was now crying for his feed.

Second appointment was 2pm - the Nuro Surgeoun...Rob Hunt. Tall bloke...scared Vy but so calming and reasurring. I was expecting the worst. Ive always hyped myself up to expect the worst cause then you can cope if its bad news and if its good news you get the wave of relief. I think its cause Ive been let down far to many times with all of Wilhelms apoointments...and I think in a sence its a wall to build up so you dont fall in a heap.

Rob gave mateauz a full pyhsical. Was happy with his weight gain, how he was feeding, even overly happy that I was using MCN's as they were helping Mateauz hips (something that I see has helped greatly now) and as I expected...there were the Buts. that all familiar lump was there..bobbing up and down, wanting to come out yet still bounce on my stomach.

If I refer to a part of Mateauz body...its usually the left hand side as this is the side effected by the brain damage.

Rob told us that Mateauz would not crawl until atleast 18 months of age as his hip was tight and his ligements on his left side were weak. His arm remainded close to his body and his hand in a fist. He was glad that his face was no longer dropping but wait...stop my little boy wouldnt crawl until he was 18 months?? NO!!!!!! Why..i didnt understand...

how can you say that

I wanted to scream. He's a baby, he will crawl, dmae you he will get on those little knee's and hands and crawl. We'll bloddy show you mate! Fire was now in my belly...tears were hot but the fire was there!

I cant say I see Mateauz sitting correctly with out intense physio in a few years time

:o WHAT!!!! so how can he crawl and not sit??? It was explained to us that he was to week to get the strength up to go from sitting to crawling and sitting alone would be hard due to his hip. NO NO NO!!!!!

I couldnt look at Rob....I could only sit there and look at my little guy who was now feeding on my BB happily, with that little twinkle in his eye and his hand reaching out for my face, rocking him softly.

Dont worry baby...mama is gonna help you. We'll show them how us Bourke's do it


The next 6 months proved to be some of the lowest and highest points of it all so far...

haemo sounds like a tosser Maz!

so gld you're getting all this out hun - it's fantastic "therapy" for you - and helps the rest of us see all the pain that has gone on for your family - you really ARE an amazing crew hun!

I have to keep tissues near the PC now in case there is another update from you when I sign in Maz. I can't believe how much this is making me cry! Can I say it again - you are amazing!

On the rollercoaster of Emotions

Luckliy for us, we had already been through the system with Wilhelm at Hume services...I knew the drill and it wasnt as frightening second time round. I remember the first time our Case Manager Sue came around she just looked at me and grabbed me in her arms and cried with me. She didnt have to say anything, I couldnt between sobbing either but she was the first person to reach out and do tht other then Jed. The first person that actually thought I needed to be touched and held. My own mother only offered me worlds of ... negetivity....

I thought he was going to die....your in for a long haul now....what he's a cripple..what will you do?

I know I was bought up to be black and white but sometimes my mum, as much as I love her is so cold and uncaring in these things. Its these moments when I feel I dont belong anywere...that I have no real family other then my darling Jed and my children. I tell my kids every day I love them...even if I'm mad with them and ive screamed like a fish wife for 5 mins...i always apologise and tell them I love them, with meaning and love. I just cant stay mad..I cant do to them what was done to me.

I suppose I try and be positive towards everyone.....I try to see the good, as much as someone or something erks me to death so instead of running...I try to get to know the person or situation instead. I was so thankfull for Belly belly in the last 6 months. its been not only an outlet...an inlet....not just friends...its so much more then that...soemthing words cant really describe. Little words...hugs, pm's can sometimes mean so much more to me then 3 little words from those close to me IRL.

I did go through a very bad stage a few months back. I found it increasingly harder to read my baby buddies.....dont get me wrong I was so happy that their babies were perfect for them...I felt betrayed and yes..jealous that my little man wasnt. I began to feel left out as chatter evoled around their childrens highlights and them doing their mildstones perfectly while my little man was still having this nasty clot floating around and struggling some days to be. I often hated them for being so happy...i just wanted a little piece of what they had....I know it wasnt their fault...their absolutely fanatastic girls and deserve happyness...I was just hurting and needed to scream and cry yet felt like if I did no-one would hear me. I began to post less in the thread and within time it has died....yet the same girls post somewere else and yes I am part of it..and I still find it hard to read what their children are up to without having that stabbing jealousy. this is not me...im not a jealous person...its what this disgusting sickness that Mateauz has done..robbed my baby of ever being normal and im going to have to see the pain in his eyes for the rest of his life. Its something no mother ever wants for their child....yet I have 2 children that I cry for constantly, that both have such different needs yet still have the same thing in common..a mama who loves them unconditionly and will be there for them when they fall so I can pick them up.

yep - you guessed it, im sitting here bawling my eyes out...like a goose. It hurts like hell to know that you cant take it away from you kids...no bandaid can ever cover the owies...no kisses from me will make Wilhelm have none behavioural issues. No medicine will make Mateauz be able to have the strength he needs when he is sick...its the world biggest torment..and yes you question what the hell you did to have your children deserve this cruel punishment? this torture. You hate yourself because as a mother your ment to be able to fix anything and everything....you gave birth to a child and if its sick then most people think its the mothers fauly...sociatey points and unspoken finger, a sidewards glance and under the breath mumbles about it.

Yet...what does one do in this situation.....think of what can be instead of what should be and haul arse and move on!

Hun there is nothing more I can say than :comfort:

You know we are always here for you hun. Keep looking forward, Mat is proving the medico's wrong every day. You are gorgeous hun.

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?

big hugs to you :hug:

Im TOTALLY with Dragonfly on this one and was going to say the same thing...
Your little boys are here for a reason AND they were given to you because you can help them be what they need to be.

You are one special woman, reading your journey makes me think and realise and reflect over my last 9 months with MJ and i just shake my head. I had no idea what you have been going through, it makes my whines seem so insignificant really...

Thank you again for sharing this amazing story and your raw feelings and emotions - you are so brave :hug:

Maz you are an amazing strong woman. I really admire your strength & determination.
I really don't think I could go through half what you & your family have been through. And you are all still there together every day.
I know it is so hard for you guys, but to me, you have the perfect family.
Your babies have the best mother in the world for them. You.

Maz, you have nothing to be jealous of.... Mat is ahead of a lot of the babies from our belly buddy group. It is me who is jealous of you and Mat!

Thanks Maz every time i read a new post from you my respect and admiration for you and your family increases! You're amazing people with incredible strength thank you agaiin so much xxx

oh gawd.... I may have to get on a plane soon and give you the biggest damn squishy cuddle I can. :hug: will have to do for now.

:hug: Maz, I had no idea! You are such a strong and outstanding woman!

Reading about being in the hospital took me back, but even Veygas being in hospital for 3 days seems so insignificant now compared to what you and Mateauz have endured! I know how hard it is leaving the rest of your family at home, being without the immediate love and support, and send you big :hug: for that too!

You are amazing and admirable and your love for your family shines through!

xxx

This is the first time I have sat and read your whole story Maz...You are incredible and an inspriation. If I can be half the mama you are to your special blessings (all 4 of them!!) I will have succeed.

:hug:
Much Christmas love to you all.

Maz- You ARE incredible. You are such an inspiration, whether you realise it or not. I think you're amazing Xx

Maz your are an amazing women for going through that on your own..so to speak! i agree with the other who have said your an inspiration to all the other mothers out there
********************** HUGS **********************************

Hi Maz,

When it comes to family I know how you feel, they can be insensative. My aunt once said to me "Can they fix her?" do you think if her disability was fixable they wouldn't have already 'fixed' the issues???? So insensative.
Always remember you can't choose your family but you can choose your friends. You can always choose to be around people who are supportive of who you are and what you do. I have minimal contact with my birth family but I have my 'family' that I have made who provide support and a shoulder to cry on when times get tough.

Good luck

Sjl