Tuesday, March 13, 2012

Hello!

Hello!
Life has sure caught up with us. Being back to work full time is proving to be quite the challenge. Although I do find a moment at the end of every day to read my favourite blogs and take a peek at Facebook keeping up my own blog is not working out too well is it!! At the end of the day the exhaustion sets in and all the things I wanted to share just take a backseat to my calling bed.
Nevertheless, I did want to stop in and let everyone know that Nicole is doing quite well lately. I guess that is relative though. She's still on drops twice a day and as of yesterday the tears and fighting has picked up again for any and all lens business.
After nearly 6 months of putting in Nicole's lens without having to swaddle her today I cracked. And I cried. And she cried. After almost six months I had to tie her down and pry her eye open through teary eyes....mine and hers. But damn it I got the stupid thing in.
Anyhow, I try not to dwell on it. I hope it's just another stage that will soon pass. I guess it's all just a reminder of how much easier things could be. Thoughts and feelings that no one can understand except those of us going through it. And believe it or not, through all of this, we actually received an email that preceded to explain to us that although we were going through difficult times so were others. And then it listed all the things other people were dealing with. Yuppers. Thanks for the love.
I guess it's partly our fault. My hubby and I stand strong together. We are each other's support. No one else in our life understands. Not one other person. Sure people empathise. But unless you've lived it you've got no clue. I suspect that because we stand strong people don't see the pain.
Maybe a day in our shoes would help.
There are no morning cuddles. Nope.
There are drops.
There are physical restraints. Tying your baby down to do something so very not natural,
There are lenses. Lenses you pray to get in the first shot.
Lenses you pray you don't lose through out the day.
There are long days of work from which you come home exhausted and find the lens has been lost and with it any and all money made that day and more.
And now, exhausted you crawl painstakingly throughout the house looking for the impossible.
There is laying an infant down and taking their sight away. Every. Single. Day.
There is planning entire days around patch time. How much time left has become normal jargon while others wonder what the heck you are talking about.
There is crying. There is fussing. There is a child begging you to unpatch them. But you can't.
There are endless doctor's appointments.
There is starving your child so someone can force sedatives down their throat for these appointments.
There are surgeries and retinal detachments and glaucoma and corneal scrappings.
There is nothing good.
Nevertheless, we trudge on. Each day passes and we fall in love with our girls more and more and we thank God for all the good that we have. We have learned that life is too short. So we brush aside the ignorant comments and move forward. And smile. Cause truly...life is good.

8 comments:

  1. Oh how I love your posts! You describe so well the drama that is life with a contact! Thanks for sharing your experiences... this band of contact moms/dads really makes this road a little less difficult!

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  2. How is it that I've only just stumbled upon your blog!! Congrats on surviving 4 kids!! LOL. Thanks for the sweet comment. I love having the support of all of you!!

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  3. They are CLUELESS! No other person on earth can truly understand the heartache a parent feels "torturing" her child on a daily basis. If they did, they wouldn't have sent you a stupid email telling you how bad others have it.

    Also, I read a blog about a little boy with cataracts, it is the Glover family blog I think. Anyway, she commented on my blog one time, she told me that it doesn't matter that someone else doesn't have a leg, when you break a toe, it still hurts like heck. That might not be word for word, but you get it. I think about that from time to time. Our kids might have vision after all this, but that sure doesn't matter in the day you are dealing with all this crap.

    You could send an email back and tell them to not try to comfort you, it is NOT working. You don't need to hear how you got it soooo good. Because it SUCKS. You know that it could be worse, but that doesn't make it great.

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  4. Oh how I needed to read this! Thank you for making me feel normal because what we do is ohhh sooo NOT normal!!! I'm sorry Nicole is fighting the lens in the morning now. :( Maybe 18 months is just a phase?!... one that will pass quickly, I hope! I wish I had encouraging words but I am so right where you are right now and the only I have is... this is hard and it sucks! LOL How is that for encouragement?! But you are right, Life is GOOD! And I'll cheers to that!

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  5. You are amazing! And you will make it through Contact Hell... And yes, things could be worse, but that does not make what you are going through any less painful, less emotional or easier for Nicole. If I hear one more time, "well, at least she has the one good eye - she'll be fine." I don't want one good eye - I am fighting for two! And so are you and your family. Don't give up the battle. You will win this war!

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  6. SO frustrating. I have to deal with 12 hours of patching a day, BUT no contact so I am not going to tell you I know how you feel. But, I sort of do know a little bit because he hates the patch. HATES. We go through so, so many a day. His face is red, he is mad, I'm crying. Ugh.

    Anyway, this was supposed to be a positive comment! You are awesome and the positive is that your baby won't remember this BUT she will know that she can see and...I like to believe there is a special Eye Mom award for us down the road..

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  7. I am so thankful my daughter told me about this blog. I am a Gramma of a 6 month old girl with PHPV and I feel bad now reading all your comments about what people have said. I'm pretty sure I've told my daughter that it could always be worse, that she needs to be thankful that this is not a life or death situation. Now I know I've likely said all the wrong things. You'll have to forgive people like me --- we sometimes just don't know what to say. I guess I just need to be a soft shoulder to lean on, on those tough days. My daughter is doing such an awesome job with everything she has had to deal with. I know it breaks her heart when she has to patch her daughter or has to fight with her to get a contact lens in or out. Dr. ap'ts are hard, long days as they poke & prod at her little eye and you just wish you could trade places with her. You are all very strong, brave moms/dads so keep up the good fight. Your children will grow up to be strong & caring, just like you're teaching them to be.

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    1. I hope it didn't come across too negative. It's just sometimes hard to keep it all in and stay strong. You sound like a wonderful Mom and Gramma and being that shoulder to lean on is absolutely the best thing. Thank you for the lovely comment and congratulations on the baby granddaughter. =)

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