Friday, May 18, 2018

Hd sucks

When you find out when another family has hd you feel heartbroken and wonder will any of our 2 families be free.
All i want is rhe next generation to be hd free. It would be along journey with many heartbreaks but worth it to have hd free babies.
I feel like i did the wrong thing have kids with a chance of having the worst disease. I wish i gave them freedom to live but i didn't make that choice and regret it everyday.
My youngest 2 won't remember me when i get full on sick. They will only know th e sick me.
My only hope is to teach them about hd and make sure they have hd free kids. I couldn't bear to have grandchildren with hd.

Tuesday, February 27, 2018

Hd free kids

I have always wanted a huge family. But hd has stopped that. We have 4 children and have stopped having anymore. But i can't stop thinking about having more children that are hd free. Is it so selfish of me too want a couple of my children that are hd free and can help their siblings if need be. I always thought i would have a whole tribe but hd has taken that from me because with every pregnancy my mental health gets a little worse. I just can't stop dreaming of more children. I wanted 20 at one stage but would settle for 2 or 3 more. I wish i could afford ivf so i only have to have 1 more pregnancy twins or triples hd free would make my dreams come true. I was born to be a mama and have so much love to give.

Why should we have to wait until our kids turn 18

I think it's unfair that i have to wait until our kids turn 18 to get tested for hd. It's our right as parents to find out. We could prepare them better. There isn't a time that i wish i knew.

Huntington's queensland

Huntington's queensland

Hd process

Hd sucks

Biggest regret

I regret not having hd free kids. Until you fully get into it you don't know shit about how bad it is and how hard it is to watch loved ones become monster of the horrible disease.
I wish for everyone that had hd has hd free kids and ends this never-ending disease that distroys families.
I going to making sure my kids understand it and make my grandbabies hd free.
I struggle everyday with this disease someday can't get out of bed. The depression part is so overwhelming. I hate living this way.

Sunday, July 09, 2017

Life moments

Im so lucky i have 4 beautiful children each eqiue on their own. Beth is a such a wonderful cheeky girl always on the go. Making us smile. Whether it's putting my purfume on or watching kids tv. She makes our family complete. So glad she came into our lives. Since she has our bond as a family it strong just like their sibling love. Wyatt is  full on with smile to get his way. He can be very difficult at times but then there is moments when he is so loving and happy well behaved. Cooking with us the other day or being very useful actually wanting to help. Mione is so very much emotional. She can change in a heartbeat. She was spoilted more as a toddler with her speech problems but she is strong person. Always trying to get her way. She has a strong personality. Sometimes very bitchy already has a additude. She never thinks before she speaks or acts. She wonderful at caring. Byron is a lazy unmotivated boy with additude. He is a smartarse like his father. He is well like boy at school wonderful student. Always helpful. All of them different but same sometimes. It's such a wonderful job to be their mama im so proud of my children. I love doing craft cooking watching movies dancing parks being apart of their school life listening too them having family cuddles tickle wars colouring. I'm so lucky that they came in mylife it has made me a better person. Loving them unconditionally has giving me meaning to being a mama. They are the reason i get up everyday. I have the most outstanding caring loving husband. He loves me no matter what i look like. He loves my bad habits. Im so lucky to have in mylife standing next to me. I'm so proud of him and our marriage. We strong together and everyday we try to make each other happy and give each other what we need. If feels like we have been together forever.

Only downside of mylife is huntington's disease and everything to it destroys in its wake. Life is too short.

Saturday, May 20, 2017

My biggest dream

Cure huntington's disease

Trapped an alone

If feel like no one nos how i feel. How can they understand something i can explain. Is more than depression it my whole essences my brain is broken different. I doing my best but feel helpless. I'm off my depression tablets to find new ones. It's already a hard start to a long journey. I feel alone like no one can understand me. I try so hard too not be like my mum. Her mood swings were awful. I don't want my kids to see me that way but it's happening. I feel lost useless broken unworthy. I don't want to damage my kids. Sometimes even if im trying my best im not strong enough. I have no hope. There is no light at the end of my tunnel. My appointment with hd clinic is the 2nd june. Hopefully a mircle could happen but i highly doubt it. Since i was 16 i have tried so many depression tablets. Hopefully i can male it through the next few months. I hope my relationships will be fine. Its hard for the kids to understand why.