There’s a dangerous game that we all play, and today I was reminded that it doesn’t do any good to play. That doesn’t mean that I won’t stop, but I need to be reminded that it doesn’t do any good.
It’s that game where you convince yourself that somebody’s else’s life is better than yours.
The doctors are actively trying to take Charlie off his ventilator. At first, he wasn’t doing so well, so they decided to take him off all his sedation medication. Once that kicked in, he would open his eyes for up to ten minutes. As I stared into those eyes, fear hit me like a ton of bricks. I have no idea if my baby will be normal. I have no idea what damage has been done to his brain, and it will be a very long time before I know. All the "what ifs" overwhelmed me, and I excused myself for a water break.
While in the parent waiting room, I asked another parent how his child was doing. Similar to Charlie, his child had heart problems, and had to go on the heart/lung machine. Unlike Charlie, there had been no brain bleeds associated with the procedure. I’ll admit to being a bit envious that he had only one problem to deal with. With Charlie, we have to get his heart well, and then we’ll see what else we have to deal with.
Well, I am an idiot. The other parent told me today that his child will have to be put on the transplant list. So here I am thanking my lucky stars for my own problems. My son has lived eleven more days than they said he would. For that, I am thankful.
KM
The Barnyard 
Katy,
It is perfectly normal to ask those kinds of questions. But, I bet Charlie is going to be fine, with all the prayers and support
from all around, a friend of mine her son was not supposed to talk or walk and he does all of it, and he had a stroke when he
was born. Charlie is going to amaze everyone! How is he doing off the ventilator? Is he doing ok? We are all praying
for two very strong parents and one precious little baby Charlie!
Take Care,
Gwen
Like Gwen said, I think it\’s normal that we do that. I can only imagine how hard it is to have all these questions about your son and his future. Charlie is definately a fighter. I hope that he is doing well off the ventilator. Like you said, Charlie made it 11 days more than they said he would, hopefully he\’ll keep on proving them wrong.
You guys are still always in my thoughts and prayers.
HUGS for you and the hub and a great big kiss for little Charlie,
Antonella
I think its almost a natural response to play that game. I can admit to playing that game more than once in my life. What ever life throws at You, Charlie, and The Hubs, I\’m pretty confident that it will be handled…all three of you have amazing strength. Even when you think its just the opposite.
You all remain in my daily thoughts and prayers.
Love, Gina
Katy, I so wish I could just flip a switch and Charlie would be all better!! It\’s totally normal to think those thoughts, it\’s only human, we all do it, ok I admit I do it all the time, well at least this person doesn\’t have it as bad as I do. We all have our own challenges anc can\’t say one person\’s is easier than another\’s. Hang in there!!
Thanks for the reminder that we never know what others are dealing with on a given day. The day my brother died my mom parked illegally to run into his apartment to get something and when she came out someone screamed at her for parking there. I would hope that this person wouldn\’t have done that had she known what was going on in our family. You just never know.
Keep the strength. I believe you will be telling baby Charlie the story of his first few days every year on his birthday for a long long time 🙂
Oh honey, you\’re not an idiot – you\’re normal! Hang in there and keep praying. I\’ll keep praying too.
There will be many times throughout Charlies life that you will envy other parents and their child. Like when you go to a restaurant and your one child is running wild while the parents at the table next to you have 3 children who are sitting like angels. This situation has happened to us more than once. The toddler refuses to sit still! But then I may hear the father speak very harshly to one of his kids and I am thankful that my child is active and is allowed to be a child, not a little adult.
My prayers are still with you, Charlie and Hubby.
-S.
Katy,
What you are feeling is perfectly normal. Don\’t think that it isn\’t. You are in a very difficult position right now. Take every day, every little step as it comes. My thoughts are with you and Charlie and your darling husband. Lean on each other through the good times and the hard, and let us know if there is anything that we can do to help you through this most difficult time.
Hugs and many blessings heading your way!
Becca
http://escape-for-a-sec.blogspot.com/
Sounds like the normal reaction to me! Everyone always thinks that other people have it so much easier than themselves, but that\’s just not the case. Each person/family have their own problems to deal with. I used to wish my family was more like "so-and-so\’s", but then I realized that their life wasn\’t perfect either!
Hi Katy, you are right in that we never know what someone else may be going through, but you wouldn\’t be normal if you didn\’t have these thoughts. This whole situation just reminds me to stop whining about the unimportant things in life, for while we are doing this, there are people facing genuinely difficult situations. Baby Charlie is in my prayers, as well as you and your hub. May miracles keep unfolding before your very eyes, and you all all be blessed always. Much love and positive vibes to you all.
I think we all play that game. It is part of life, I think. I think you are strong and holding your own. It can\’t be easy. My thoughts and prayers are with you always..
g.j.
Katy,
What you are thinking and feeling is totally normal! As to being scared, who wouldn\’t be? My kids are all (supposedly) "normal," but I get scared, too. My daughter is 17 and talking about moving out on her own. This terrifies me, but I believe that God will provide and get me (and my daughter) through this one day at a time. It is frustrating and maddening and there are the times of asking "why me?" I try to tuen that around when I start to feel that way and ask, instead, "Why not me?" I am sure words are little comfort, so cling to your husband and your baby and know that We are all out here praying for you.
Love to you all!
Christine
Hi KM,
I am so saddened to read of your struggles with Charlie, but, first, congratulations on the birth of your son. My prayers are with you, Charlie and your family.
KM, I don\’t know what a normal reaction is when someone we love is in danger. I know that I am consumed with anger and fear when the ones I love are threatened or when I am in danger of losing something I want with all my heart. So what if for a few minutes we envy another\’s fate over ours. There are so many thoughts that pass through my brain when I\’m afraid. Soon enough the envy passes. All I can do is put one foot in front of the other – do what I can – comfort those who are hurting just like me – pray – share my experience. It sounds like you are doing all those things.
KM, none of us know how to do the crisis of life. How could we? You are doing the best you can under the most difficult circumstances life has to offer. Know that I am thinking of you.
Betty
Stop beating yourself up girl. You are going to play that game for many years to come. We all do. You have no idea how many times I\’ve played that game! But then you come to your senses, count your blessings, and press forward. Hang in there! Charlie just may surprise everyone. : )Sue
What you are is a mom who loves her baby! Don\’t apologize for how you feel! And don\’t think less of yourself for feeling that way. It\’s just part of what you are going through. Also, don\’t let yourself get caught up in the "what if" game. You will drive yourself crazy! Get through today, this hour, this next five minutes. Take it all as it comes, piece by piece, and you will make it through. Hang in there.
You and your precious family remain in my thoughts and prayers! BTW, I heard "Girls Just Wanna Have Fun" on the radio yesterday and smiled as I thought of you. Life does keep going, as a amazing as it seems.
HUGS!!
Katy, you are going through the most difficult time I can imagine anyone going through. You are entitled to think whatever you think and feel whatever you feel. I wish you, your husband, and son courage and strength.
How true, how true. I know I play that game far too much, over much more trivial things. I just wanted to give you cyber hand squeeze.
Katie,
The grass always looks greener on the other side, that is until we get there and realize that
things are just the same or tougher! Charlie is winning every day that he survives, and
hopefully he is healing too. Every day is a little more ground gained. Take care of YOU!
Cheryl
Happy 2-week birthday to Charlie! I have been reading your blog for quite some time, and post occassionally and was quite dishearted to hear of Charlie\’s unexpected early arrival. He sounds like a fighter though! And he is sooo cute! I agree with all the other comments that what you are going through is normal (as normal as it can be with all you and your husband are going through). No one is going to expect you to act a certain way or not think certain things. You are speaking from your heart when you write about Charlie and you need to express ALL your thoughts and feelings even if it is to all of your anonymous peeps out here! We listen to what you have to say without judgement and pray for your family. And I think the reason you are compelled to keep posting is that it is one small fraction of your "normal" life you can hang on to right now. You can not spend 24/7 worrying about the what-ifs, you do need to spend some time on yourself even if only for 5 minutes each day. (I write this as a mother and know that the last sentence I just wrote is a lie, you never stop worrying about your kids or get 5 minutes to yourself!)
Post about Charlie when you can and know that we are keeping him in our prayers.
Lori
We all play that game at times Katie… at most of us play it for the most frivolous of reasons and yet there is nothing frivolous about your hope… Keeping up positive vibes for dear Charlie and strength for you and your hubby!
Take care!
KC