Wednesday, December 12, 2007

I was told, by Joel, that my last update was too harsh concerning my comments about "some doctors" and about "how those with special needs are sometimes treated." I just want to apologize if I came across this way, but I also want to clarify my thoughts.

As for the comment about doctors; I am just frustrated! Some of them did make mistakes and "dropped the ball", as one doctor confessed to me. Also, it's not like the mistake was made on something complex, like Gavin's heart condition. I think I would be able to accept a mistake made on that because he was born with a very complex heart condition, but keeping him hydrated? I just don't find this to be too complex!

As for my comments about how those with special needs are treated; Again, I'm just frustrated! Also, I'm just being the 'voice' of someone who can't voice their opinions. Hence, the name of this blog: Gavin's Voice. I feel that I need to speak up for Gavin since he and others aren't able to. I NEED to! It helps me to feel like I am doing SOMETHING, when there is so much that I can't do to help Gavin and others. This is not an easy thing for me to do either. I actually feel very exposed knowing that others actually read this! Sometimes I think that I should stop blogging, but it helps me to express my feelings, plus it's a way to let others know how Gavin is doing. This way we don't have to answer so many questions, etc. I do feel a little weird when I think about others knowing so much about me, my feelings and our family. Maybe all of you should start a blog too! This would be more fair don't ya think?!

Anyway, I just needed to get these thoughts out there. Besides, I figure, if people aren't happy with what they read on here.....don't read it, right? I am sorry if I upset anyone though.

Today I came into the room to find Caleb having a heart to heart conversation with Gavin. He was saying: "I wish you could taste the milk that you get. I hope you don't have to be on oxygen anymore. I hope that you don't have to go to the hospital again." It was so cute, yet so heart breaking for me to hear and see! He was also really worried when we were driving to the pulmonologist office today. He saw the hospital, because it's right by their office, and he said to me; "This isn't a doctor that Gavin is going to have to stay at, is it Mom?!" Thankfully, I was able to tell him that Gavin would be coming home with us! Although, we learned at the visit that they want to do a sleep study which means an overnight stay at the hospital, and also some other test to rule out trachea malasia. Ugh! I really don't want to ever step foot into a hospital again! But, at least Gavin's home with us tonight! Caleb, and all of us, are happy about this!

Have a great night!

Love, Alicia and Family

7 comments:

Anonymous said...

Alicia, Thank you for your blogs. You have every right to be frustrated. Thank you letting us know how you are feeling and what we can pray about. You are right, if people do not like it, don't read it. If the word gets out maybe the docters will keep their eyes open and this does not happen again.And like you havesaid in the past maybe they need to listen to the parents more. We pray for Gavin, you and the family. You and Joel are great parents. May God Bless you now and always. Love The HIlton's

Melissa said...

You have every right to say what you want! Don't apologize - this blog is an excellent and productive way for you to work through everything! You all are going through alot of changes and it takes time to absorb it all and find the joy in the small victories. I bet you will find as I have that you tend to blog about more positive then negative. If you ever feel like this is turning into a crapping forum then, put the blog on hold. If it brings you some peace then continue, but if it brings you down take a break people will understand. I say if they don't like what you blog about then they don't have to READ no one is forcing them.

Having a special needs child is not all sunshine and roses where you know what you are doing all the time. I often feel like people think I KNOW everything about my son because he is my son, but my standard snipe-behind-the-back comment has been well sorry I didn't birth his handbook. We are learning to deal with this just as they are learning to understand our children and their diverse challenges. Besides I like your blog!

2 Corinthians 4 7-10

Thinking about you alot lately - need to call you. Thanks for the book I have one for you to read also

Melissa.

Kimberly Hass said...

Alicia,

I as well want to thank you for your blogs. I appreciate so much the time, effort, thought & feeling you put into each one. I have thought many times that this would be a difficult thing to do -- I know I couldn't do it, so I won't be taking your advice and starting one myself! So thanks again for opening yourself up to us. You don't have to apologize for anything you say -- it's your blog!

Cindy said...

I often feel the same way you do about my blog. Do, I say too much? Am I too honest? What do people think? But at the end of the day it is a way for me to clear my thoughts, to work thru them, and hopefully understand. And I can't tell you how many times I've reffered back to past posts for needed information. Also, It's for my children. So that they can read and maybe understand down the road. And YES everyone should BLOG!! It would be more fair, wouldn't it? Let everyone expose their fears and emotions!

Nicole said...

Alicia,
I TOTALLY agree that you should NOT apologize for what you write/feel! It's not about what other people think of you or what you write....it's about you and what your going through and Gavin, sweet little 'buddah' baby!! Dang, he is so stinkin cute....one thing is for sure....you guys make cute kids! LOL!
Back to my point though....if this is what you want to do, then dang it...do it! Dan always teases me and says "Oh, yeah, I forgot, it's all about you" YEP!!! In this case though, YOU (and Gavin, and family).
YOu said the one thing you can do is speak for Gavin...but you do so much more than just that, ALicia... the love you give him, the support and most of all, your trust in God!!!! I just finished a book by Max Lucado...called "Facing your Giant's" (Excellent book by the way) anyway, he said in it tonite, that GOD promises us Complete Peace...not partial, half or whatever....TOtal complete peace....how awesome is that!?! Just reading that...gave me peace! I tend to be neurotic and anxious about things...thus the book....lol.. and just READING about what God does for you and me...just warms my heart. God chose you and Joel as Gavin's parents for a reason, don't ever forget that!!!
Love you!
Nicole

Annette Selden said...

It's such a hard thing that you're going through, Alicia, and often people in your situation are afraid to be as honest as you are. It helps me to know how to pray for you, Gavin, and your family when I read your blog.

No one can know your trial exactly as you experience it, and while I wish I could give you some nice, tidy answers I can't--and nobody can. Unfortunately, there will always be people who misunderstand and who want some nice, happy, easy answers to what you're going through.

Doctors should be accountable for their mistakes--I've had family members who've paid for their mistakes as well, and it's difficult not to be angry.

I will pray for your peace and comfort as you work through this.

Love,
Annette

Inspired said...

Alicia - please visit my Blog at renabeana.blogspot.com

Love,
Julie