Do you know what it's like to go to bed and wonder if it is possibly your child's last night on earth? Probably not. I do. What makes it even more nightmarish is knowing the decision partly lies in your hands. Last Wednesday night I did exactly this for the 2nd time in 7 months. Lane was showing signs of being ready to be extubated on Tuesday but given our decision not to re- intubate

if he couldn't breathe on his own, Dr. Strolher wanted to

make certain he stood the best chance possible. He chose to wait until Thursday. He said if it were any other kid he'd extubate then. I was grateful for his understanding

and compassion. Facebook was flooded with statuses about Lane, requests for prayer. The response was amazing. As I read each one and all the responses, some from people that we don't even know, I was once again reminded of how many lives this child has touched. Kristi even made Lane's picture her profile pic. It's very humbling to see so many people love your baby. Except that Lane has never been "my" baby. He's always been "our" baby. So many people have taken care of and loved Lane from day one. I'm honored to share him with so many wonderful people.

Making the decision to let your baby go if the only way he can stay is to be intubated or have a trach or have medicine keeping his BP at level that can sustain life is hell. It takes courage, selflessness, strength, love and an enormous amount of faith. These are all things that child has taught me. Watchn your baby struggle to breathe, seeing the fear in those blue eyes when normally he shows no fear, knowing he's tired, is hell.

I went to bed that night with surrender that I don't know what's best but He does, thankful for the blessing that is Lane's spirit and tenacity.

Amidst the unbelievable sadness was the peace that a God who knows us before we are in our mother's womb would never, and will never look away.

"Please God, hear the prayers of many tonight".

Friends

Lane Carter has taught me many things in his short time on this Earth; faith, strength, courage, acceptance, unconditional love, patience, I could go on and on. He has also taught me a lot about friendship. Lane has an ability to touch people in ways others can't. Mandy says there are kids in her class who will only respond if she tells them Lane wants them to do what she's asking. He had 2 little girls the past 2 years in his class that just adored him. They always sat with him and held his hand. Liam and Lane have never played together a day in their lives. Never laughed together, fought with each other, shared secrets, ganged up on me together, or done any of the things brothers do, yet I've heard Liam call Lane his best friend. I have seen Liam finish reading a book to Lane after I had to quit to deal with Morgan. This is a child who has to be threatened or bribed to read aloud to me. His love for and acceptance of his brother is a beautiful thing. Even Morgan can sense that there is just something special about Lane. She loves to "turn" his pump off, watch for the bus, push him in the house after he gets off the bus, put his cart away and generally try to care for him. I have watched as she has tried to feed him her snack, change his diaper, dress him, give him his meds and even listen to him with the stethoscope. I love to hear her say "Lane Lane".

It melts my heart. It's funny to see her try to pick him up. One of my favorite pictures of all is Morgan and Lane laying in the floor wearing their Christmas shirts, holding hands. So sweet, so genuine.

The world may see Lane as a special needs kid. Someone to be passed over and brushed off. I know this as I have witnessed it. There are few words for how this makes me feel. To Liam, Lane is his baby, his best friend, quietly watching over him and protecting him. To Morgan, Lane is her big brother and she plays the role of the annoying baby sister perfectly. One minute she's hitting or scratching him the next she's laying her head on him or climbing up in the chair just to sit with him. Her desire to care for and nurture him will make her a fine nurse one day (I hope).

There is not a day that goes by that I don't wish Lane was a typical baby but I also know that Liam and Morgan are being taught lessons that will shape their lives in ways I never could. The compassion, understanding and acceptance they show are all born out of their love for their brother. I know this is part of God's plan, part of Lane's legacy. I am forever grateful for this.

I have been taught the true definition of friend. There are many people that find time for us in their busy schedule when we need them. There are a few who never look at their schedule when we need them. These are the people who start praying when they hear sirens that it's not for Lane, answer the phone every time it rings, day or night. Come sit with Morgan even though their own child is home sick. Spend the night at my house with my kids, constantly bring me food, feed my chocolate addiction even though they've made it their mission to make me eat better, teach me to love smoothies, and have an uncanny knack for knowing when to show up on my doorstep just because they somehow knew I was having a bad day. These are the people who drop everything and come to Vandy no matter what when he's here. Who pray without ceasing, who teach, work with, challenge, play with, watch over and love my baby. Those who give up their weekends or nights to babysit or just hang out with me.

These are the people I let my guard down around, those I allow to see the hurt, the fear, the anger. These are the ones I laugh with and whine to. The ones who see the tears when the rest of the world sees only the smiles that mask the pain. Friendship isn't about who you have known the longest...it's about who came and never left your side.

" I thank my God upon every remembrance of you". I love you all.

Baby steps

Take it slow people, take it slow. This is my prayer for the next day or two. Lane is doing better, off the antibiotics as they feel this is all viral, off the Norepi (BP med), on minimal vent settings and even breathing over it. He is still swollen and his output is not what it should be. We have to get rid of some of this fluid before they try to extubate. He probably wouldn't succeed if they were to try with all this fluid he is still retaining. This is where the fear comes in. We said they have one chance for a successful extubation. If he isn't able to breathe on his own and should require a 2nd intubation we have chosen not to put Lane through that. With that being said I now get to live in fear that they'll try too soon and if they would just wait a little longer he'd be ok. I can't live with myself if I thought it was our fault, pushing him when all he might need is a few more days. I know that he's breathing over it and that the longer it stays the greater the chance of infection and he sure don't need that BUT... You can't push Lane. Every time it comes back to haunt you. Learn from the past people and don't cost my baby his life trying to be aggressive in his care.

I know that Dr. Strolher understands this and will have Lane in optimal shape before he even considers extubation but it's still scary.

People are always telling Lane to fight. How many times is he expected to do so? Did anyone ever consider that he might be tired? I know I have. I told him in May that if he was tired it was ok, that he could let go and I'd see him again one day. He showed me that he wasn't ready. He had a great summer, did so well in school, blew bubbles for his friends and saw how much he was loved and how many lives he's touched on Oct. 10 as nearly 100 people came to celebrate the miracle that is his life. Now we're back to being sick all the time. God understands our prayers even when we can't find the words to say them. I am grateful for this. As we are once again faced with heartbreaking decisions. May the grace and mercy of our Lord fall fresh upon us.

Another Christmas miracle needed

Once again we find ourselves in need of another Christmas miracle. It is Dec. 9 and Lane has bi-lateral pneumonia, low blood pressures and a widespread infection, possibly in the blood. We knew he was getting sick and tried to tell the pediatrician he had pneumonia. She wanted to treat him as an asthmatic and prescribed Pulmicort daily. Said he sound worse than he was because it was all upper congestion. We saw an ENT and a pulmonologist. They both sent us on our way. Guess you have to be an EMT-IV and a wanna be nurse mama to diagnose your child's correctly. Stupid people. So here we are in ICU, on a vent. Again.

I have a baby girl that's going to turn 2 on the 22nd,who deserves a party. I have a 3 little kids and 0 little presents and a child that is having to fight yet again to live. Can someone please tell me why none of this seems to bother me? I prayed last night that God would take this numbness and replace it with hurt and fear and the faith I once had. Maybe I know that in the end Morgan will get her party, Santa will indeed come and the magic of Christmas will fill our home once again. As far as Lane goes, well, how many times has he proved them wrong? I know he's sick but I'm counting on God to tell me when it's his turn for our angel again. Ultimately, I know Lane is not ours, none of them are, they belong to God and He will want Lane back someday. Despite it all I just didn't feel that May was it, I don't feel this is it either. I pray God will allow Lane to tell us and that He will back that up. God does speak if you shut up and listen long enough. At any rate, I just wish I could feel God holding on to me, I KNOW He's got Lane, He's never let go of him. I just don't feel His presence like I used to. How I yearn to...how I yearn for peace and rest and mercy for that beautiful baby.