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.
BellyBelly Life Member - Love all your MCN friends
Jun 2004
The Festival State
3,008
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.
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
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.
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
Last edited by ~Saram~; December 30th, 2008 at 08:32 PM.
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!
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!
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.
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