Sunday, January 20, 2013

Why don't we know?

As more time passes from the day we found out(ok, yesterday), and I'm trying not to over do the whole posting thing. There's some things on my mind though that I just cannot shake. Like why don't our pediatricians educate us more? Sure, I understand that this is something weird, and not that common. We get warned about all sorts of uncommon things, why not this?

It really wouldn't take that much to warn people either. If it saves 350 babies eyes a year, well, that's 350 babies eyes a year! Think about. We never know what we're looking for. Looking back at some pictures today, we've realized that we have been able to see it since about September 6th. So, our son was only a month old. We had no idea what we were looking for though. Why couldn't we have been warned?

Now that I think about it as well, we never really saw the pediatrician checking our son's eyes. I've asked women on my birth board, and most of them responded that the pediatrician only checked their babies eyes sometimes. How is that OK? Why don't they check them every time? A lot of the women also commented that the well check visits usually got a check, but if they sick absolutely not. Really? So just because a baby is sick means you shouldn't check? I really don't understand the logic behind doctors today. It's like they are trying to find an excuse to be more and more lazy. Sure, you might get a lot of parents who would think their baby has this when they really don't, but you could also save babies eyes. You could avoid the possibility for chemo, and surgery on a 5 month old baby! Why is that not worth it enough?

I really don't understand it, and it's honestly motivated me to become an activist and/or a pediatrician! I mean we know about all sorts of rare things, so why is this one left out?

Now I'm stuck with all these thoughts of maybe if we knew what we were looking for, we would have been able to catch it when it was still small enough to save the eye. The more time goes through, the more I sit here and think I don't want him to lose his eye. I'm scared for him. I'm scared I'll be afraid of him without his eye. What if I can't look at him because it scares me?

You've got to realize this is coming from a very paranoid, anxiety-having momma. So, I get freaked out by the silliest things. Thinking about an empty socket, freaks me out. Or his prosthetic being obvious.. I feel horrible for it, but I still am afraid.

I mean, maybe if we would have known what to look for, this would have been much easier. Maybe we could have just done chemo and been done. I've heard of children losing their eyes to this around a year old, then two years later the cancerous cells come back, so they have to go under chemo. Really? Is this really going to be this much of a long road ahead? Is it really going to be this difficult.

As crazy as it sounds, lately, I've been looking at other babies in pictures and I'm jealous. I look at their eyes. They have the normal red eye, whereas mine has the white. Why does my baby have to have the white eye? Why couldn't one of theirs? Sure I don't honestly wish this upon anyone, but in actuality I do kind of wish it was anyone but me. What did I do that was so horrible to deserve this?

I'm sure some of the things that I'm saying are silly, but it's just how I'm feeling through this whole process. Work gave me Thursday, Wednesday, and Friday off. Just in case. Just to give me some time. Needless to say the cat is out of the bag, and everyone knows. They just want me to be able to have the days if I need them, if we get adverse results on Thursday. Adverse results.

I'm not prepared for this.

1 comment:

  1. Amanda,i just wanted to tell u my SIL has a prosthetic eye.And i have to remember which eye it was.Other wise u dont know it if u didnt know. I cant even begin to tell u how sorry i am for your beautiful baby boy.I am praying that this cancer hasnt gone anywhere else. God i pray for that. I am the one who told u im fight stage 3 colon cancer.And i meant what i said about trying to help u.Im doing IV chemo.And i also did 6 weeks of pill chemo and radiation. I have to say IV chemo is way worse than the pills.But my IV chemo is way more stronger.Please know im here to support u and your handsome baby boy. You will make it through this with him.He is your son.And let me tell u.Your love for your sweet baby.Will get u through this.I can so understand your fears.And not knowing if u will be able to handle his eye missing until they get him one.And it has to heal.But when u see your baby boy after surgery.The mama in u will jump into action.Your a good mother honey.I feel your love for him.And i feel your fear for him too.And i wanted to say.Please dont beat yourself up.U and your husband DID NOTHING WRONG!!! Some cancers are in your genes.And there isnt much we can do.It isnt our fault.My mom blames herself for my cancer.She had colon cancer.But she just had to have surgery.And no chemo or radiation.I had radiation for a 4 1/2 inch tumor in my rectum.They were trying to make it smaller and keep it from spreading.I know its not my eye honey.And im sure u are still in shock.I know i would be.I will keep lifting u all up in prayers.I know its hard to believe that a loving God would let this happen to your sweet baby.I wish i knew what his plan is in all of this.But i dont.When i lost my 4 babies.I hated God so much.But he did bless me after that.Plus my first son got mentally ill at 16.And has been in a mental hospital.He is going to be 31 this year.I remember yelling at God saying what have i done that u would do this to my son.Well im sorry i wrote so much.But i fell in love with your sweet son.And i so want to be here to support u with so much love and understanding. Hang in there sweet Amanda.And i am so sorry u guys have to even deal with this.Loving hugs always and all my love too.