you never give me any warning....when you come undone...ohh its like a winters morning.....
Yep im listening to barnsy. Yep dh, dj and vic are asleep. And im wide awake.
Down loaded this song two days ago. Kinda by mistake. Kinda not. Listening to it now...i guess makes everything clear-er.
I know I cant win the fight with djs fits. I cant. We cant. How can we when we dont understand it. Angelman syndrome fully? Honestly? Im not admiting defeat. Hardly that. I will still be here fighting for dj. I'll always hold him while he fits. Comfort him comming out of them. I'll not run and hide as much as part of me wants to. I have to be. Thats what mums do. Dh working means its all me. Which is expected. I need to find my groove again. A new one that dosent have me on my knees begging that higher power to quit hurting me. My family. Those I love.
I need to find me. I need a battery recharge. An escape that leaves my body as is. Not adding to the scars I have. Thats hard as the hours dh works I get little time but again I need to make it work, some how.
I wish that I knew what I want to say. How to express it. My head has a million things running through it. But no words to allow it to flow...i feel worn. I feel older than 22. I guess im morning a life that could have been while trying to celibrate a life that is. Im trying to act as an adult when being faces with a reality that other adults seem to struggle with; alot. Yet im ment to breeze through it all? Not sure how I can; yet. Im sure once I see a shrink it'll be clear-er.
At the end of it all I have my boys. My dh. My life. But to live my life and not just exist it...well...i need help in that regard.
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Dansta 22 + DH 31 + DJ 2yrs+ Vic 9mths = Nut House
Saturday, June 25, 2011
when you come undone
Posted by Dansta at 10:52 PM
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2 comments:
Hi Dansta, DJ has such a rare disorder that there is probably not a lot of specific support in Australia? my blogger friend lindy,is in Scotland ,her blog is the gigglefest, her son Jack has Angelmans. She is a lovely lady, full of beans and a sense of fun, and if anyone knows what you go through day to day and the thoughts in your head and your worries, she will. this is her blog and her private email.
http://lyndylou-whocares.blogspot.com/
lyndy@talktalk.net
Hey there girl,
I know exactly how you feel and I have come undone so many times over the years. My son is now 13 and he is the most precious child to me, he has been through so much and has been extremely brave and has taught me to live in the moment more than I ever would.
Angelman's Syndrome is either a deletion on chromosome 15 or an inactive gene. If the seizures are not being controlled by medication then ask your neurologist about a Vagus Nerve Stimulator. It's only a small op, Jack has one implanted and it has had a huge effect on his seizures although it can take up to 2 years for the effects to lesson but so worth it! I wish someone had told me about it years ago instead of trying lots of different meds and the Ketogenic Diet.
There is a support group here in the UK that supports families with children who have a rare chromo abnormality, world wide. They have members in over 88 countries. This is their website address: http://www.rarechromo.org
If you get a chance to talk to these ladies on the phone then they will totally understand because every one of them has a child with a rare chromosome abnormality. Once you join this, there is a support group on facebook too.
If you want to add me on facebook, I am Lynne Mckenzie and I am the one wearing the Kiss me Quick pink hat.
You can also email me at lyndy@talktalk.net for any kind of support, I'll be there for you cos I know what you are going through. Hang in there girlie X
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