Friday, September 5, 2014

When everything goes wrong


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As parents all we ever want is the best for our kids. I always knew her life wouldn't be perfect, no-one's is. I just didn't want her to have to go through the things I did. I want her life to be better than mine, easier. Isn't that the way its supposed to be?

Before she was born I was super paranoid that she would have eye problems. My dad wore glasses, her dad wears glasses and I was born with a turned eye, had surgery and still wore glasses until 17. I knew the odds were against me, but I was hopeful that she'd be spared.

I was over the moon when she was born and her eyes were straight. They were perfect. She was perfect.

I've been hyper sensitive when it comes to her eyes since birth. I notice the tiniest turn in her eye. It happened here and there every now and again, but never anything consistent and never anything to worry about. In fact other people probably wouldn't even have noticed. Until about two months ago.

It started happening again. More frequently. It became obvious and not just to me. Others started noticing. I had a gut feeling that it was turning like mine when I was younger. I kept trying to brush it off like my family was, but deep down I knew. I didn't want it to be real, but it was and it is.

Today she was seen by a specialist and they confirmed it's the same condition I had.

First step is glasses and then possibly surgery in a few months. The thought of having to put my baby to sleep for an operation is beyond scary to me, so I'm pretending it wont happen for now.

My heart is breaking. It's breaking knowing that not only does she have to deal with her allergies, she now has to deal with this too. It's breaking because I know what its like to live that life. I know how cruel kids can be to others who are different. It's breaking because I feel partially responsible.

I know on the one hand I'm over-reacting (an anxiety disorder tends to make you do that) and glasses aren't that bad. There are much worse things that could happen to her and I know I should be grateful that its nothing worse. But on the other-hand, shes my baby. Shes my poor helpless little girl and there's something wrong with her and I can't fix it, no matter how much I want to, and I really really want to be able to fix it.

I just have to let it all play out how its going to. Which is really hard for a control freak, and really hard for a mum. I have to trust the doctors and the technology and hope it will work. I know there have been many advances in technology since I was younger and that's comforting, but there's still that part of me that wishes I was a fairy godmother and could click my fingers and make it all go away.

Toni x


Linking with Grace, Sonia and Bel.

23 comments:

  1. Oh honey :( All feelings I can very much relate to. Just go with it - be angry, be sad, feel how you need to feel. And with time you'll let go of the guilt. You didn't choose this, or cause this, it just is what it is. She'll be fine - our kids are strong and brave and resilient!
    Besides, all the cool people wear glasses ;)

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    1. You were actually the first person I thought of as I was sitting in the hospital hearing the news. I was thinking wow how has Emma done this so many times when I feel this sad going through it once.

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  2. Oh Toni!! Sending hugs to you. I can completely understand why and how this is so heartbreaking for you. At least you know that surgery can be done and it can be fixed. Plus kids with glasses are mega cute. I know this isn't helping, but you will get through this xx

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    1. Yea it is good to know it can be done, but on the other hand the surgery scares the daylight out of me too.

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  3. We don't want our kids to have to be 'different', but she is drop dead gorgeous, and cute glasses will look great on her. Fingers crossed for you that it all turns out well for you. xx N

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    1. We've ordered her a cute pink pair, I just have to get used to seeing her wearing them.

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  4. What I would give to have a fairy god mother who could take this worry away for you. Big hugs to your Toni, and like the others I happen to think kids look totally gorgeous with glasses xx

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    1. I know we all think that as adults, I just remember hating them as a child (because I was teased so badly, didn't help that I had the fugliest glasses ever).

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  5. Oh Hun. I'm so sorry to hear this. Everytime I read your blog I note a lot of similarities between us - it's rather eerie. I too have health problems that I knew would probably be inescapable for my kids but still I hoped. When my eldest was born she had Brachial Plexus Palsy which required years of physio, chiro and specialists but we were lucky as when we went for the surgical consult (I think she was around 1) the doctors were pleased to announce she'd made a recovery and no longer need surgery. It was such a relief not having to do surgery but she still required physio and all that because it left her with a gross motor skill delay which she still struggles with at age 5 even though all the physio and that has stopped. As a baby she also had the milk protein allergy, eczema, and sensitive skin which also kept me busy. I was devastated then when a few days before her first birthday we found out she has a severe peanut allergy and a mild macadamia allergy. She outgrew the milk protein allergy and the macadamia allergy but we were shocked by the severity of the peanut allergy. If you have a peanut butter sandwhich and then FOUR hours later touch or even breathe on her she has a reaction and sometimes it isn't immediate; one time the reaction didn't occur until the night when she was sleeping and I found her the next day with a swollen face (luckily her throat didn't swell). But just as I thought my daughter had escaped my problem; asthma - she had her first attack. I was heart broken that I had passed it onto her and frustrated that not only was she not getting a better life (in terms of health) she'd actually fared worse. I'd love to say my second daughter fared better with her health but she didn't. Early in pregnancy they discovered she had a dilated kidney and she was also not growing properly. I could do nothing but submit myself for continuous tests and ultrasounds. Then when she was born they gave my baby an ultrasound on her kidneys to see what the dilation was like before operating on her and miracle of miracles it had resolved itself and didn't require surgery. I took my baby home and thought we were in the clear. Then a week later she became sick with a flu-like bug but doctors said she was handling it OK so we soldiered on. Then just when we thought she was doing better we took her back to the doctor for a check-in as it was going to be a long weekend and next thing I know we are being rushed to hospital and they are putting her on oxygen and hooking her up to machines. Stupid RSV virus nearly took my daughter and I sat next to her little body for a week while she struggled for every breath. Thankfully she was OK but it left her wheezing for 6 months and then she lost a lot of weight (she fell completely off the chart) and didn't gain it back for a very long time. We saw many specialists in regards to her weight and she became a pin-cushion until we finally got a diagnosis for that at 18 months. Even now at 3 she's very tiny and can still fit into a lot of her baby clothes. We don't know yet if I've passed on the asthma to her but I'm sure it will happen. Feeling helpless and yet still trying to do anything you can to try and control an uncontrollable situation is something I know well. Good luck with your little Miss and the surgery.

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    1. Isn't it amazing how similar we can be to other people we've never even met before (in real life at least). I have chronic asthma too and I've been paranoid about passing that on to her too. It actually slipped my mind until I read your comment.

      It makes me so sad when drs don't listen to mums. How horrible what could've happened to your daughter with RSV. Glad shes ok now.

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    2. Haha, sure is :-)
      Thanks Hun. I feel very lucky that she's still here.

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  6. Aw. It's not your fault but I know how hard it is to see your kids suffer in any way. I am sure that because you know too well how it felt when you were young that you'll be the best support for her.

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    1. Yea that's what Trent keeps saying.

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  7. Don't blame yourself, Toni! Your little one is so lucky to have such a wonderful and caring Mummy. I hope it all works out best case scenario for you and your gorgeous little girl

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  8. Don't beat yourself up hun, be glad that you caught it early so she might be able to get away with only wearing glasses for a short amount of time.

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    1. Yea I'm hoping they can fix hers a lot earlier than they fixed mine.

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  9. Oh you poor thing, what a hard time for you. Hoping she has the best possible result. xx

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  10. This would be a hard situation. Hoping the turn will be resolved with early intervention. BTW I think she looks very cute with her glasses!!!

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  11. A year ago and look how far you have come

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  12. Surgery is always a scary thought but sometimes it is necessary despite our fears.
    I had a turned eye as a kid and it wasn't until I was 7 (ish) that I had surgery. I still recall it and the fact that I thought I was pretty cool for having had it, the surgery that is. I only had to wear glasses for a little while after that and haven't worn them since. I am thinking a trip to the optometrist is needed though as I feel that I might need them back one day.

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  13. It must be so difficult for you as a parent to go through this, but from the point of view of your daughter, at least she will have someone to turn to who understands what she is going through. And Im sure you will do whatever it takes to make her experience nothing like yours. #Imustconfess

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  14. And look how far you all have come. xx

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