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 **********************************
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
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.
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!
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