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New on the journey and feel like I’m so alone
 

Amumdoingherbest

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Joined: 2017-06-06 Posts: 8
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Hello,
I’m new to this website and infact to everything. My 5 year old has autism and I’d just got my head around this… then I have my daughter who is 10 months old and We are under GoSH for some unknown neuromuscular condition. I’m really starting to struggle. We were in local hospital at the weekend as my daughter stopped breathing and no one had answers. Thankfully she started breathing again…. I just am struggling.

We’ve started looking at equipment. Support sears etc as she can’t sit and she won’t eat solids without choking so everyone thinks maybe a specialist chair will help.

I just feel so alone and lost. I just need to know if this is normal and I’ll start to cope better soon….

12 June 2017 01:30 PM # 1

J Shenal

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Joined: 2016-04-07 Posts: 29
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Hi there!  I understand that feeling completely.  I have a 13 year old on the Autism Spectrum and a 6 year old with a rare chromosome disorder.  At times, it can be overwhelming.  You are not alone!  There are so many parents here that “get it” and we’re here for you!  I have found support groups on Facebook that have become an amazing support system as well.

12 June 2017 03:51 PM # 2

Healing Heart

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Joined: 2014-10-10 Posts: 701
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I’m old to this been doing it over 8 years now, and honestly I still feel lost (although I seem great at helping everyone else find their way…) HA.  Ironic I suppose.  The thing is I don’t think you ever get to a comfortable spot with special needs parenting.  It’s going to be a life long journey filled with ups and downs, pain and joy, I don’t know if it necessarily gets easier, I suppose you just get more used it over time.  If you’re looking for any resources or things to explore I’m happy to help in any way that I can.

My son stopped breathing a couple of times at home which was seizure related, you might want to consider perhaps a monitor like Emfit or SAMiAlert, they also have something called Angel Alert which monitors breathing in the night and movement in the night which might give you a little piece of mind

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Everyday Holds the Possibility of a Miracle

12 June 2017 10:52 PM # 3

Amumdoingherbest

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Joined: 2017-06-06 Posts: 8
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Thank you guys so much!

I just got so low and just didn’t know where to turn and the loneliness smacked me in the face.

I guess your right that you just get used to it which at least I knew deep down. I guess you form the bonds on here and other places to be able to talk honestly about stuff.

Thank you we are going GoSH on Thursday so we are going to see what they say about the non breathing as she’s done it a couple of times since last weekend too. But shall get the angel care we had one for our other children and it really was for peace of mind :)

Thank you :)

14 June 2017 07:31 AM # 4

Stewas01

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Joined: 2017-06-14 Posts: 1
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I totally get how you are feeling. I remember after our diagnosis I felt sick for weeks, had a pit in my stomach and spent a lot of time crying, but 3 years on things are much better, that’s not to say I don’t have those feelings any more but they are few and far between.
The important thing you need to know is that it is ok to grieve for yourself, it is ok to say why me? As parents we try not to forecast futures for our children but we inherently always do. When we were told our daughter would probably never walk or talk I started grieving for what I had lost, the future I had planned that wouldn’t eventuate - I would never be a nanna, my husband would never walk her down the isle, we would never catch up for coffee and cake when she’s in her 20s and gossip about the new guy or girl she was seeing. It’s ok to grieve for what you have lost, it seems weird to grieve for something you never had anyway but you need to know it is ok. Some times I like to think that even if she was ‘normal’ she may never have chosen to have kids or marry anyway, and sometimes that helps, other times crying in the shower helps.
My biggest suggestion is to find a support group, my group of mums with similar issues is all that gets me through some days, they are a life line of support and you need them because your friends really don’t understand, they will try and they will listen but they will never truly understand how you are feeling inside.
If someone had told me when my daughter was 4 months old that when she was 3.5 she wouldn’t be able to hold her bottle, talk, walk or sit I would think there is no way I would be able to deal with that, but we are there now and we can. I think about how things might be different when she’s 8 and how I wont be able to deal with it but I know as time passes I will learn and we will manage, it will be different to anything we expected as parents but we will manage, and we will celebrate every milestone along the way.

This poem pretty much sums up being a special needs parent

WELCOME TO HOLLAND

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…...

When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

14 June 2017 08:12 AM # 5

Amumdoingherbest

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Joined: 2017-06-06 Posts: 8
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That poem is amazing and actually made me cry as it is so good at telling people and myself what’s going on!

I guess I am in mourning and I really hate saying it, like you said I’ve never had any of those experiences that I am mourning… but looking at it like that I can even see the different stages of mourning in my husband and I.

I think I just need to remember my daughter is still unique and she’s perfect at being Olivia.

It’s just good to hear I’m not alone in these feelings as it is overwhelming! I just always felt bad to say I was overwhelmed.

Thank you for the poem again.

25 July 2017 10:19 PM # 6

Healing Heart

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Joined: 2014-10-10 Posts: 701
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Amumdoingherbest - 14 June 2017 08:12 AM

That poem is amazing and actually made me cry as it is so good at telling people and myself what’s going on!

I guess I am in mourning and I really hate saying it, like you said I’ve never had any of those experiences that I am mourning… but looking at it like that I can even see the different stages of mourning in my husband and I.

I think I just need to remember my daughter is still unique and she’s perfect at being Olivia.

It’s just good to hear I’m not alone in these feelings as it is overwhelming! I just always felt bad to say I was overwhelmed.

Thank you for the poem again.

You will always grieve to some extent - you shouldn’t feel bad for feeling that way or even saying it.  There is no shame in saying you’re having a bad day or this sucks or I feel lost and alone.  I know that we’re conditioned to feel and think like we shouldn’t share all the hard parts, or that people run from us if we exhibit any signs that indicate that we can’t conquer the world with it sitting on our shoulder’s all the time.  We’re human.  We’re traveling a path most don’t have to.  Being overwhelemed is natural and to be expected.  I’m overwhelmed every single day - just doing the best I can do.  Doesn’t make me weak - doesn’t make less of a good mom.  Just means we have the ability to keep it real and not sugar coat the reality of it all.

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27 July 2017 05:50 AM # 7

CJMoffitt

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Joined: 2017-07-24 Posts: 7
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Don’t worry dear, always trust on god.

10 October 2017 07:44 PM # 8

Lemming

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Joined: 2017-10-10 Posts: 4
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I think there will always be times that you grieve. Even if things are going well sometimes a little thing can remind you. I kept seeing a mum whose daughter was born a few days before mine and it made me very aware of the things she couldn’t do.
I agree with the suggestion of joining a support or parents’ group.  It was my lifeline. The place where I could say anything and know people would understand.

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