Wednesday, June 4, 2008

update

Today was Aidan's appointment with the eye doctor. He just confirmed what we already knew. Aidan is "cortically blind." What this means is that while Aidan's eyes are perfectly healthy, his brain isn't able to interpret visual information. He responds to light and bright colors and high contrast (ex. black and white designs), but he doesn't follow faces or toys. He can't look at me or anyone else and actually know who or what he is looking at. This is what we already knew because of where the damage is in his brain.

This could be permanent or it could be temporary. Because he is so young and because we are doing everything we can to help his brain heal and repair the damaged areas, we're hoping that the blindness is temporary and that it will improve over time.

I don't know what else to say. It isn't like the doctor told me anything that I didn't already know, but it's the confirmation of that fact that really upsets me. My son can't look at me and know that I'm his mother. It breaks my heart.

Right after the accident while Aidan was still in the coma, I had this vision of Aidan waking up like most of us do from anesthesia, groggy but able to say "momma" and able to move. I just thought he might be weak. I pictured him leaving the PICU to the regular peds unit and us wheeling him around in the little wagon or car like I would see the other parents doing. I thought my child would recover and be normal.

Lets just say that my nice pleasant daydream was squashed. It became apparent that I was horribly naive about the extent or seriousness of Aidan's accident. And then again, maybe that isn't the case. I just wanted to have hope that my baby was going to wake up and be the same little boy, that the whole gut wrenching experience was nothing more than a nightmare. So, maybe that explains why I'm so depressed.

I wake up every day and I wish that I could go back and have my old life back. I pretend that Aidan is going to wake up from sleeping in his little car bed and come running in our room and climb up in the bed with me and snuggle. My faith is wavering. I want to put this all in God's hands, I want to just let it all go and move on, but I can't. I can't move on. I'm lost. I don't know if I'm doing the right things to help Aidan. I've been thrown into a world that I knew nothing of before this accident.

Oh, well.... enough of the depressing rambling. Aidan is fine. He was a little irritable today, but he calmed down this evening and was really sleepy.

On the golf tournament front, we don't have any registration forms in. We've had some people say they are going to be playing, but nothing in writing. I have a feeling this whole thing is going to be a flop, and I'm afraid it's going to end up costing us in the end. It's pretty disappointing. I'm hoping that we'll get some forms in the mail tomorrow and Friday, although Friday is our deadline and we have to tell the golf course how many players we have.

Please say a prayer that we have a good turnout for the tournament. Pray for healing for Aidan and for his sight and for me to find some peace in dealing with all of this.

Thanks!
Erin

5 comments:

Kehau and Brandon said...

Don't give up hope and think your dreams are squashed! Aidan will be able to track with his eyes and he will look at you! I know he will. Caleb didn't do it initially either but he can see and track now. Don't listen to the doctors. I try to avoid taking Caleb to the doctors as much as possible. But we will pray that Aidan will be able to track soon! And even though he may not look at you now, he hears you and feels you and knows that you are there and that you are his mommy! Keep your head up and remember that God can do EVERYTHING! We are praying....

Anonymous said...

Aidan knows when you are there. The connection can never go away. He still can be in your bed and you can snuggle with him.
I pray the golf game will be a success. I pray that all the golfers out there will tell their friends about this.
Cindy.

Anonymous said...

Erin

Don't give up hope, you are already on the path to improving Aidan's life. Ashleigh who is 2 1/2 years post ND could not recognise me by sight for well over 6 months. She would calm by my sound and smell I think but she didn't see my face and know it was me. We would walk right up to her and she had no reaction. Yet today she sees almost everything. She smiles and puts her arms out when I come to her and Aidan will see you and know you again.Yes she still is cortically vision impaired but she can see quite well and understands a lot of what she sees.
I have been and still often am caught up in the horrible feeling that I am trapped in a nightmare that has taken over my life and dream of what she should be doing or saying, but Erin I can promise you that even though it doesn't go away it definitely gets easier after the first year. Now I only cry rarely if something triggers a memory or I see another child the same age as her.Most days I am happy and we have a fun family life and Ashleigh is so loved by all who meet her. We rejoice in the fact we can hold her and smell her hair and dress her up and give her a happy life. This December she will have lived for half her life with a brain injury and I think in time I will just always think of her as having been this way, and somehow thats a little easier to bear.
On another note I think Aidan would do well with the AIAHP program. Contact me or Joeys Mum if you want to know more. You guys are doing an excellent job and Aidan is going to improve every day.

Liz and Ashleigh
www.dropshots.com/miniwench

Anonymous said...

Erin,
I wish there was something I could say to make you feel better. Since I've never experienced this I can't really imagine your daily life and what you all have to go through. I think of you every day and I pray that the golf tournament has an awesome turnout. You might have already said this, but were you able to get it announced on the news? Call me anytime if you want to talk, cry, scream, whatever. Wish I lived closer!
Love,
Brandy

Briana said...

Erin- Just because Aidan can't "see" you persay does NOT mean that he does not know you are there. I watch that little boy follow your voice whenever you walk into the room, from any direction. And you are the ONLY one that can calm him down when he is upset. Even though he can't see you right now he knows your voice and your touch and that is very comforting to him! He has already gotten so so so much better and this is just the tip of the iceberg. Stay strong, you are a wonderful mother and you are doing everything you can and MORE for him. -Briana