I’m so very very sorry. I wish there was more I could do or say.
I have tears streaming down my face and a lump in my throut as I hold back the sobs.
I am sorry. Those are the only words I can think of. I am sorry for you and your wife, that you will miss the life your son would have had. And I am sorry for your son, that he will miss the life that you surely would have given him.
Please let us know about Ian’s progress.
Tokyoplayer, you have a wonderful heart. I’m so sorry for everything you and your wife are going though. My thoughts are with you.
Of course, while I pretend to be all big and strong, I’m really scared. Fucking scared. This is my son but I can’t do a damn thing about it. We don’t even know what the problem is. The experts disagree, and all we know is that Ian doesn’t have a normal brain.
It’s just not fair. :mad: Why this? Why us? It feels like someone has taken a hot iron and punched it though my soul. I can’t sleep and I can’t find rest. there aren’t words to describe the depths of dispair.
I think that since no one was there for me, I’ve always looked after children. Without kids of my own, I’ve been the best uncle I could. Shit, I’ve even taken great care of pets, because I’ve always believed that someone should be there for you.
Tears stain my keyboard as I try to comprehend what is happening. What will it be really like to be there for a severly handicaped child, 7/24? If we have the good fortune to have a son who lives?
Will he breath on his own? If not, do we ventilate or not? What if he struggles to breath? Do we use a resprirator (spelling wrong, I know, but fuck it)? What will he be? What is the meaning of live?
There are no certainties in life, I know, but this sucks. 
I am sorry I cannot lessen your pain. From reading your posts, I believe that you and your wife will have enough strength and love to handle whatever comes. Ian is blessed to have a father such as you - for however long.
-Robin
I’m sorry, TokyoPlayer. I wish you and your wife the strength to get through this.
Damn. It’s 4:17 am and I’m back from the hospital. It looks like Ian wanted to come a little early.
They admited TW and gave her medication to stop the early labor.
I’m off to bed now.
Don’t trouble your already full heart and mind with trying to find answers to these questions now – you’ll know the answers instictively as Ian’s father when the time comes that you must face those questions.
Regardless what challenges you, your wife and Ian may face, here’s wishing you joy at the birth of your son.
Aw jeez, I am so sorry, TokyoPlayer. Best wishes and good thought to you, your wife, and young Ian.
Evidently it’s mine, too.
All I can do is wish you strength. And I do so, wholeheartedley.
I have to start work soon but having read your recent update, I just wanted to say that you are in my thoughts. Strong, grow up big and fast thoughts to Ian, and keep your chins up Mum and Dad.
TokyoPlayer, you have no idea how very strongly I wish there was something I could do to ease the pain of this for you. But all I can do is offer you my prayers, and hope that you, your wife, and Ian will find peace soon.
My parents lost my brother when he was 5. That is my narrow window into what you are going through.
But I will tell you that everyone in my family now (years later) each have come to peace with Kevin’s short life and death. He is a rich blessing to so many people. In the brief time our lives overlapped, he left an imprint, like a watercolor on my soul, that endures to this day.
Ian is a precious, beautiful child of God. And his life, however brief, will have an impact on your life that may take many years for you to realize as beautiful.
I wish your family peace and love. I am thankful for little Ian and all he will mean to you and your family.
I couldn’t even find the composure to reply yesterday when I read this.
I’m praying for you, your wife and your Ian.
This is terrible, but at least Ian has the one thing going for him - you guys as parents. I can’t imagine any better way to handle this, with such honesty and determination. I’m just so sorry about the pain and fear, but I’m glad you’ve resolved to work through it and be there for your child, and I’m sure your other children to come will think of him fondly as well. My absolute best wishes to you.
The latest. TW was hospitalized last night and they gave her medication to stop the early labor. After taking x-rays of her pelvic bones, they’ve decided we can try for a viginal birth. That would be really good. They also recommend that it’s best to go forward, so we gave permission to remove the IV and drugs. We now start the count down, but the doctors have no idea how long it will take. Things may stop on their own.
We also had another pow wow with our doctors and set the rules for treatment. According to the team, if Ian doesn’t breath on his own, it will be a strong indication that the breathing problem is due to the nervous system problems and not to being premature. In that case, we have directed that they are not to take heroic measures, which would likely be futile and painful. We prefer to spend our valuable time together.
However, if his breathing is labored, there is more of a possibility of this coming from being premature. We’ve authorized treatment which we’ll revew as necessary.
Since we’re now looking at a vaginal birth, I will be allowed to attend! The hospital has a rule which the father has to attend two birthing classes (which I hadn’t since it looked like we were going to have to have a c-section). In a very un-Japanese move, they had a nurse give me the run down for what was covered in the classes. We’ll have a mid-wife in as well, so we’ll pick up on the breathing as we go along.
TW will remain hospitalized until the birth and we’re getting set. It’s been another long day, but I’m hoping for the best.
I really would like to thank everyone for your kind words of encouragement. It’s hard being here without family on hand, and for everyone to be so kind really makes it much easier and gives us strength. 
TW and I are growing closer and closer to each other through this. More than a quarter of everything we say is to tell how much we love each other and how much we appreciate what the other is doing. I hear stories of pregnent wives snapping at their husbands, but she’s never done that once. She’s always concerned about me, and I have to keep telling her to worry about herself and Ian. I can take care of myself during this time.
I’m sending thoughts and prayers to you, TokyoWife and Ian, TokyoPlayer. That’s all I can offer. I just wish the best for all of you whatever that may be.
Still praying for you and the family.
Regards,
Shodan
This August marked the first anniversary of the miscarriage of our first child. On the anniversary, we gave the child we never saw the name “Matthew John” and said goodbye with a little letting-go ceremony just for ourselves. Even looking at the name now makes me tear up.
I just wanted to let you know that you aren’t alone.
I’ve been following this thread, and I wanted you to know that my thoughts and prayers are with you and your family, too.