Feeling sad

[ronniemom]

Hi everyone,
Haven't been on here in a while. Hope all is well. Just wanted to let you all know that Ronnie is doing really well at the mo. He gets the occasional headache, which bizarrely always seem to happen on a Wednesday when he's at his nans, (me and Nick are at work). I get extremely paranoid come Wednesdays and it seem justified. I cant understand it as he goes to nursery now every other day, just for a few hours and is fine, the one day he does nothing he gets a headache. Doesn't make sense!!!
i feel like i need a chat, i'm really struggling at the moment with this and feel extremely selfish as like i say Ronnie is well, i just find myself most days, like i'm waiting for something to happen instead of just enjoying him, he is such a wonderful little boy. I feel like i've let him down and its my fault he's got to live with this condition. i worry constantly about the future and what kind of life he will have.
I come on here and read about peoples issues and problems and people just seem to get on with it, why cant I. I wouldn't be without him and if he come with Hydro then so be it yet i really struggle and feel like i'm letting him down. Someone tell me off as i think thats probably what i need. A good shake!!!!

[LIZARD]

Well, I think any mom of a kid with any kind of problem will always second guess herself (I do it, too!), but hydro is NOT your fault. Know that, even if you can't be convinced of anything else. I have hydro, and my son has Chiari. Coincidence?? I doubt it, but I can't find any solid evidence that my hydro has anything to do with his Chiari, either, so what do you do? Walk on, in sheer self-defense.

I wish we could give you a clear pic of his future. We can't because all of us are different, but generally, any child who is steadily progressing can expect to continue to, and most will attain some degree of independence. The best thing you can do is what I'm doing with my son: prepare him to the best of your ability. Explain everything to him as you do it. Tell him why you do it and why it's important that it be done the way you do it (especially things like driving and other things that can be dangerous if done recklessly or incorrectly). If he's cognitively processing what you're telling him, it can only help. :)

Hang in. :) It gets better--really!! :)

*hug *hug *hug


LIZARD :)

[ronniemom]

Thanks Lizard,
Can always rely on you for some assuring words. Thanks

How do you keep your signature so i dont have to retype it all the time, cuz as you can see i forgot on my last thread. Cheers

Lesley
Mom to Ronnie, diagnosed with Hydro at 4 months old, VP Shunt. Reason not known.

[hydrograndma]

Hi Lesley - I can feel your hurt and frustration. We all know how you feel but never feel like his illness is your fault. But I am sure you are not alone in your feelings.

I know this is not easy, trust me I know, but if you could only live one day at a time with Ronnie, enjoy him and try to stop projecting too far along the road then perhaps you will calm down a little and remove the stress from your life. Stress can be very debilitating and you have to be healthy for your little one. It sounds to me like he is a delightful little boy, doing well. I know it is sad to see him suffering with headaches. I suppose you have mentioned all of this to his Doc?

My prayers are with you and your family.

Hydromom (Jo)

[ronniemom]

Hi Jo,
Thanks Jo, i know everyone is so understanding and most have a lot more to live with than me, thats why i feel selfish. I just thought god didn't throw things at us we couldn't cope with, well he got this one wrong though i do cope but only becuase i have to.
I've been trying to email you. How are things? How is Raffi? I've been worried as you always reply to my emails.

Lesley
Ronnie mom

[LIZARD]

Thanks Lizard,
Can always rely on you for some assuring words. Thanks

How do you keep your signature so i dont have to retype it all the time, cuz as you can see i forgot on my last thread. Cheers

Lesley
Mom to Ronnie, diagnosed with Hydro at 4 months old, VP Shunt. Reason not known.

(((((((((Lesley)))))))))). I'm glad I could help. :) For your siggy, click on "private messages" and on the far left, you'll see a bunch of options. The first should be "edit signature." Click on it, and you'll get a box where you can type in whatever sig you want. Then click "save" at the bottom. :)


LIZARD :)

[AMBush]

i'm really struggling at the moment with this and feel extremely selfish as like i say Ronnie is well, i just find myself most days, like i'm waiting for something to happen instead of just enjoying him, he is such a wonderful little boy. I feel like i've let him down and its my fault he's got to live with this condition. i worry constantly about the future and what kind of life he will have.
I come on here and read about peoples issues and problems and people just seem to get on with it, why cant I. I wouldn't be without him and if he come with Hydro then so be it yet i really struggle and feel like i'm letting him down.

You just stated perfectly how I feel some days! Honestly, there are times when I think "all I had to do was carry this child safely for less than a year, and all I could manage was 6 months!" There wasn't anything that did that brought Marijke early, but there I am, laying all the blame on myself. I think that this is a natural part of parenting -- but, oh, why do we have to make this harder for ourselves?

[Nat Hyland]

I think the right words are more confused, uncertain, and alone. But you are not really alone, becaue we're all here :D! And Ronnie's condition is NOT YOUR FAULT! It is understandable that you are second-guessing yourself with such a young child, but things WILL get easier. You could not let Ronnie down by trying to do what you think is best for him. And believe me, I know what it's like to be let down by your own family!

Sometimes life can feel like it's just one struggle or disaster after another. The only way I find to live is one day at a time. Trying to predict the future can only make you worry, and dwelling too much on the past will only make you sad. Living for the moment is the only way.

I have tried to attach an article you might like to read to this post, but it is too big a file. If you would like to read it, send me a PM.

Nat.

[MegNJaxMom]

Boy do I know what you mean! I actually had a doctor ask me what I did when I was pregnant to "give" Megan hydro... Needless to say, they no longer are a part of our team.

I hate that it is hard to enjoy Megs... but then she does something amazing (of course, cause she's great!) that snaps me back out of my pity party. It is hard... but that is what this place is for. I also happen to be very lucky that my mom is extremely supportive... on Megan's bad days we usually end up at my parents' house so I don't lose it!

Hang in there, take one day at a time, and try to relish in his childhood as much as you can... it goes so fast.

hugs and prayers,

[gill105]

Lesley,

as heather said i know exactly how you feel, you are not alone and for me that helps to know there are other mums out there that know how i feel. I have come to accept that it isnt my fault that orlaith was born with hydro, i did the exact same thing on orlaith as i did on my older two and they dont have orlaiths problems, but i still feel guilty, does that make sense?? Im that stressed over everything she does that when im in work i ring home constantly and if i see my sisters number on the phone im not saying hello the first words out of my mouth are "whats wrong is orlaith ok". I feel like its taking over my whole life and i really cant let that happen as its not fair on my family.

I find coming on here brilliant as there is always someone who is on that has hydro so are brilliant for the practical advice on what maybe happening with orlaith and then there are the mums who along with everyone else on here give me great advice and make me feel a lot better.

gillian

[CathyE]

Ronniemom,

Are you feeling any "less sad"?

I have read that lots of mums get emotional help from a psychologist/phychiatrist and may even need some medication re the stress of it all. Or just "talk therapy" can help.
Heck, my son was a real challengs and finally got diagnosed - sort of (a GP who specialized in ADHD). Ryan was so well bahaved in school, it got missed! But he did roam the classroom "helping other students" :D

I felt I was a failure as we had nightly fights over homework or even getting ready in time for his cubs (pre boy scout) meeting). I did end up seeking help and did go on antidepressants a few times over the years, and they did help me after the miserable getting started on them periods.

He still has some ADD tendencies, but he is doing very well. Luckily for him he is very intelligent, the problems he had with learning were disinterest and staying on task.
OOps sort of got off topic!

Seeking help is not a sign of weakness! but I prefer to think making a good health decision - when needed.

Good luck,
Cathy