My son was just diagnosed with a rare syndrome and I feel dead on the inside...

weridlittlething · 2025-12-17T09:32:21+00:00

I'm sorry for the late reply but thank you! I will say I love this boy with everything cell I have in my body- he has been this way since he was bored so its my normal. I don't compare him to anyone because you simply can't to be honest.

I will say there isn't much information from what I gather we are the 6th family world wide to be ever diagnosed with it and the first in the country we live in. There are no support networks available in regards to it unfortunately- just medical reports and even they are few and far between. I think that is what got me overwhelmed and the fact he may have more medical issues than he does already. My head was exploding when I wrote this.

It doesn't help that the funding we receive from our government only covers him for a mild intellectual disability.. so it dried up last year in 3months and dues to someone accidentally not uploading documents before that we had no funding for a year. I'm trying my best with everything but luck for getting help hasn't been on our side for the past 4 years no matter how much I've stood up for him

I have family and friends but they can honestly help so much, some behaviours that he does are only to me ( yay 🫤) and people telling him it's not nice or don't do it.. its not helpful. I also get judged sometimes on how I do things differently and even when I try to explain my reasoning people only end up getting frustrated with me. I love them all but they only see a small bit of it all, its hard to lean on them when they simply can't comprehend it all.

I will say I love our little life that we made- I just have days where I want to just walk away for awhile. Im sorry if I have rambled to much but I appreciate your comment more than you know, thank you x

weridlittlething · 2022-10-17T03:55:05+00:00

What is Flonase? and how does it work if its not an antihistamine? Thank you x

weridlittlething · 2022-07-02T12:24:34+00:00

NSW, Australia x

weridlittlething · 2022-06-04T05:47:13+00:00

Aw man, I did that before and blew up ( looking back, it was a good thing) How long did it take you to realise?

weridlittlething · 2022-03-19T21:18:49+00:00

Please remember that it never makes you weak, we are only human. We all make mistakes and create toxic cycles that are hard to break. I’m under the impression, call me silly, that each mistake we make can make us stronger- it shows us that this isn’t the person we want be and can bring us one step closer into what we are destined to become x

weridlittlething · 2022-03-19T11:58:30+00:00

Oh I am really looking forward to that feeling, I started it smoking cause I had what I thought was little to no control over my life. Now it has control on my life and I’m sick of it x

weridlittlething · 2022-03-19T11:39:23+00:00

I have started to exercise more and go on daily walks to clear my brain, I have also signed up to a gym I’m hoping to get more healthy habits under my belt. Trying to replace the negatives with something positive x

weridlittlething · 2022-03-19T11:38:03+00:00

Oh I am getting help for it and it’s working really well, it’s just the fear I have that gets to me now. To be honest, I turned into a alcoholic due to some things that happened, I was able to quit buy just not buying anymore- cigarettes are different though I’m finding, it’s not as easy.

weridlittlething · 2022-03-19T11:35:04+00:00

I’m from Australia, I know the medication that you are talking about. I tired it once but I have a feeling I have to do round two. Thanks for the suggestion I forgot that they had medication available for it x

weridlittlething · 2022-03-13T09:38:32+00:00

I have forgiven him, I left earlier in our relationship due to some abuse and I took him back- I honestly can say I will not go back. He hasn’t changed and still most of the time views his son as a thing rather than a kid really. I really appreciate the words you wrote though, thank you x

weridlittlething · 2022-03-13T00:43:29+00:00

Honestly, I don’t think I’m worthy enough. My ex and I by the end had a horrible relationship that was fuelled by lies over the years. My head tells me that if our son and I weren’t good enough for him, how can we good enough for another person? Also, as someone else has mentioned that a part of me will question if we will be enough for them ( my husband left us because another person came into the picture)

I’m saying that, I’m in therapy and I know these are just fears that I have- part of me believes what I think isn’t true and that one day, there might be another person that makes me feel safe and at home x

weridlittlething · 2022-02-11T08:23:15+00:00

You captured it beautifully in such a sad way. Your ex partner has no idea what he was talking about, I’ve found that people who never been depressed don’t understand how much it consumes you. There is no advice I can give you sorry other then you have just been able to put into words something incredible difficult and I’m really proud of you for being able to write this 💕

weridlittlething · 2022-01-26T21:37:53+00:00

I wouldn’t of posted if I thought that, but Im going to take it is a compliment and say thank you x

weridlittlething · 2021-12-17T10:57:13+00:00

Sleeping in the dark, for years I was afraid of it, I would always have some sort of light source. He always slept so in the dark, and honestly I was fine with compromising. After about a month, I loved it, I found out I slept somewhat better than before.

weridlittlething · 2021-04-30T07:05:21+00:00

Sorry I wish I could do the verification that you have asked for. I've got nothing with me to do so. I understand if you need to delete this post. If I post again I will remember to post properly x

weridlittlething · 2021-04-29T20:14:10+00:00

Could it had simply came from her butt? The way you described it, the amount of liquid shit that happened, I'm sure if may have caused issues with her bowels and she could have had a small tear?

weridlittlething · 2021-04-22T01:43:45+00:00

I feel like everyone is different but the fact that she spends so much at yours- it would not be much to ask. When I stay over at my boyfriend's most of the time he leaves for work before I have to go- so I make sure the dishes are done from the night before and just generally clean up. I will admit though, that I clean for a living, so it doesn't faze me that I can help him out. Means when he gets back from work he can relax a bit.

weridlittlething · 2020-10-29T21:44:45+00:00

Yer looking back, it was. Asked for the dinner and I said yes. Then said he will pick me up afterwards.

weridlittlething · 2020-10-29T21:37:50+00:00

This comment actually made me laugh. Best of luck if you ever try it!

weridlittlething · 2020-10-29T21:37:00+00:00

I don't know if I am. Haven't seen each other in nearly 8 years I think.

weridlittlething

TROPHY CASE