Thursday, 17 October 2013

Liam: A Son's tale. Dysautonomia Awareness Month

Today's guest poster is one close to home, my youngest son, Liam. Liam is discussing what it has been like to live with a mum who's been chronically ill for so long. I know a lot of us have children and we wonder how our illness is affecting them. It's Carers Week here in Australia, and the reality is that Liam and his elder brother have taken on a carer role since I became ill. Often children don't get a voice in this situation, so today he gets to share his story and his thoughts on being the son of a sick mum (and I get to go through my stock of tissues). 
(Me and my boy. The crazy is strong in our DNA.)

My name is Liam and my mother lives with Dysautonomia. She has been battling this disease for seven years now, it has been hard to deal with from the start to now. At the start it was very hard because none of us knew what was going on. It was scary for me being only eight at the time of diagnosis of my mother's condition. It was scary because I didn’t know if my mum was going to be alright, or if she wasn’t. Sitting in the dark did not help. As a message to parents with this disorder, don't keep your kids in the dark, because they start to make things seem worse then they really are. Because they get overly worried. I personally felt really sick for a long time because I was worrying about it so much.
(Note the photo bombing Thor)

In the latter years it got harder for me because I could see my mother deteriorating before my eyes. The so called 'bad days' got worse and went for longer periods of time. She wasn't eating and she would spend days at a time in The Batcave feeling horrible. When these days would occur I would do my best to help by doing the simplest of things, like making cordials and Vegemite toast. When I would bring it in, even in her weakest moments she would give me a smile to let me know that it will be alright. I would stay in her room for a little while keeping her company just to let her know that she will never have to deal with this on her own.

My advice for kids is when a your parent comes out of this state don't jump straight to their side and start asking questions just let them go at their own pace because you have to let them keep the independence. Questions to stay away from are ones like, "Are you ok?", "Would you like some help with that?", "How are you feeling today?", "Do you need anything?". And don’t suggest things for them, you just have to step back and give them some space. Its really hard but you just have to “respect [their] authoritah!” (must be said in a Cartman voice). If they ask for your help you do it without question just stop what you're doing and help, well that's what has worked for me. Eg When Mum says she needs a drink, she tends to need it straight away, as she's about to become ill or her bp is about to drop. 
It does take a while for you to get used to it all, because you want to help them. But when you know, and sort of understand what's going on, it does get easier, it almost turns into a routine of what you have to do and when.

And don't worry too much because it does get easier, it just takes time. But all of a sudden it clicks, and you feel much better about it. My turning point was recently when my mum got her pacemaker (Jeri). She started feel better. She seemed so much better because the last couple of months before she had her surgery, she became really ill, and that's when I got really worried again. It was a similar feeling to how I felt at the start, but when Jeri was put in, I saw her actually happy and it really made me feel so much better.

Throughout the entirety of this battle mum has been putting me and my brother first, for example taking us to cafes after school for MLT time (Mum, Liam, Tom time). We would sit and chat while having hot chocolates talking about our days and having a great time. All the while she was battling quietly. These were really great moments with my mother, I have always admired her for her strength even in the hardest times, I am so lucky to have a mother like her. I am so thankful for all the sacrifices she has made for me and my brother to try and show that she was ok so that we wouldn't worry about her.

Thanks mum from your little Leemy. 
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For those unfamiliar, a short explanation of Dysautonomia can be found here.

One of the most famous people with a form of Dysautonomia is former Yellow Wiggle, Greg Page, who lent his name to a research fund at The Baker IDI, here in Melbourne, Australia. Donations can be made at The Greg Page fund For Orthostatic Intolerance.


Information about one of the current research projects under way in Australia at The Baker IDI, can be found here.


7 comments:

  1. Oh my goodness. What a all round amazeballs person your son is Michelle! I thought his post was insightful, helpful and funny. And I loved seeing the pictures of you both together. Your relationship shines out of them. Well done Liam, you are awesome. :-)
    Rach in NZ

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  2. Looks like we've got another great writer on our hands in your son! Thanks for sharing this!! I am glad to hear the pacemaker is helping!

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  3. LOVE IT! Awesome Contribution Liam, thank you sweetie.

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  4. I have to agree you have an amazing son. My children don`t handle my illness very well, though I know it must be hard on them and I often feel guilty for circumstances that are beyond my control. Reading you`re blog was very insightful and I felt much happiness for how your son is dealing with this. Wishing you the best always. Thank you for this fantastic post. I plan on sharing it with my children in hopes that they better understand this and see that their not the only ones having to deal with a sick mother with a very misunderstood illness like Dysautonomia. With Love from Jade in Australia. Hugs.

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  5. Hard to type because of the tears in my eyes, the song was the final straw! What a wonderful human being you are raising, bless you all xx

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  6. Awesome, just awesome...WOW. You've raised a great egg Michelle :) Blessings to you all!

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  7. I am grateful to hear the children's perspective. I began having severe symptoms while pregnant and was diagnosed shortly after my son was born (he'll be 7 in January). He has never known the carefree, energetic, happy person that I used to be. From a very early age he assumed the caregiver role. As soon as he could crawl, he'd come over and put my head in his lap when I'd be laying on the floor. Now, if I can't get up (from wherever I am) he will come and cuddle next to me. He wipes my tears away and kisses my forehead, all while telling me "it's ok mommy, you don't need to cry". He knows when I need more help than he can offer and will go seek it out for me.
    I hate that he has such responsibility at a young age, but am grateful for him everyday. I am glad that he is so strong for me and only hope that he continues to grow up understanding my illness and not resenting it. You have raised a wonderful boy Michelle! His attitude gives me hope!

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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx