Johnny Angel, How I love him...

Today we we're invited to a family book celebration at Liam's school. They had spent the past several weeks writing about different family members and then compiled it all into a book complete with illustrations, a dedication page and an about the author page. They divided into groups and each read their works to their family that came. Liam wrote that his brother was a special needs boy, that he ate from a pump and that he took care of him. He went on to say how very much he loved him. He told how his Pa had once made him a playground and how he'd just made bunkbeds for him that were awesome. He mentioned that he had an older cousin named Lacey. They like the same things and he likes to play with her. He even included the dogs. Of course he said they were both annoying and then just had to add that his mom sometimes kicks them. ( oh great, now thanks to our budding author everyone thinks I go around kicking helpless animals.) That's ok I guess, Will didn't escape our son's honesty either. Now we all know that his dad is bald and loves to smoke. He did go on to say that he (unlike me, evidently) loves the dogs and works at the fire station. This is what he wrote about me in his own words: ( now I'm guilty of plagarism since I copied this exactly without the author's permission). " I love my mommy. My mommy takes care of my brufer. She like to whach weel of forchin." He read the whole book proudly. You can tell he loves his family despite all our flaws. His little face lit up when we walked in, so happy he was that we both came.

A few weeks ago Liam got to be the star student for the week. They're allowed to bring pictures and special things to show and talk about each day. They fill out a sheet telling about all their favorite things and this and the pictures are posted in the hallway for everyone to see. The parents are asked to write a letter to their child to be read to them on the last day. Now that you all know what Liam wrote about us I'd like to share what I wrote about him.
Dear Liam,
This has been your week to be star student. I'm writing you this to tell you you are my star every day. I am SO proud of you for many reasons. I love your sense of humor. You make me laugh every day and you enjoy making others laugh. Finding the joy in life is a blessing, sharing it is a gift. I love your kind and gentle spirit. You have always cared about others, even from a very young age. You helped Andy find the bus, helped carry the drinks when the lady across the street fell and are constantly looking out for Lane. You inspire me to be more compassionate. I love your imagination, your desire to please, your curiousity and the way those brown eyes of yours sparkle.
I love, admire and am constantly amazed at your compassion and acceptance of Lane. You've treated him with nothing but respect and dignity every day of his life. Life with Lane isn't always easy but you've never once complained. If everyone would treat all special needs people as you do your brother, the world would indeed be a better place.
You are growing into a fine young man with lots of character. You have been a gift from God to me since he moment they handed you to me. I am honored to be your mom.
I love you Johnny Angel, to the moon and back!
Forever, Mommy

So much of my writing (or rambling) is about Lane's struggles and triumphs it seems if Liam hardly ever gets mentioned. I wanted to take the time to share a little of what makes that little boy so special and why he makes my world go 'round.

Deliver us from evil...

It's 6:00 in the morning. As I sit here tired from having not slept again last night, a hundred things on my mind, wondering when the next seizure will hit Lane again, he's had 2 already this morning, the sound of sirens shatters the stillness. "At least they're not coming here" I think. Followed by "Lord help whoever they're going to." I used to love that sound, part of being a firefighters wife I guess, now it makes me sad. In the beginning, it was the excitement of it all. I'd watch Will & his friends get a call, grab their gear and race out of the squad building, I was carried away with this new way of life, filled with pride that my Will and the other guys were on the way to help, be the heroes for a short while. Now I always pray that whoever is waiting on them gets the help they need. I've been on that end 3 times now with Lane and you never know when we'll go again. Part of me still finds the excitement in the medical part of it but now more than ever I know the sorrow and fear that usually follows the sound I once loved.

Lane has so many bad mornings, so many seizures. WHY can't we get these under control? How much worse will they get? I fear I already know the answer to that. Why did Dr. Mencio leave the decision whether or not to have hip surgery for Lane up to us? I am NOT an orthopeadist or a PT for God's sake. Why can't someone just tell me what he needs? Why do I have to pray the exact same prayer over and over every day for the past 3 years? The only thing that ever changes is the symptoms I'm asking God to relieve for that innocent little boy. My faith waivers on some days, a fact that I'm not proud of but will admit to. Other days it is the rock I stand on. Obviously I am still a work in progress on this journey of faith. I've come a long way but have such a long way to go. Will I ever get there? I pray so, Lane is here to teach us all the most important lesson anyone will ever learn. The reward for all the hell we've gone thru? Eternal life in Heaven with our Father and all those we've loved. I mustn't lose the faith I've clung to for 3 years even when I've felt the devil's presence so strongly here lately. That's a very unsettling feeling but I guess it's all part of the great test we're put to every day.

I still catch glimpses of the Lord at work and it is still the most awesome thing in the world but it's harder now. I guess I don't look for them as hard as I did during our 3 month incarceration in the NICU but if you allow yourself to, you WILL see. On Oct. 30 I was called by Lane's teacher and told that he was having a lot of trouble breathing. He was scared and crying and getting choked and thus creating a vicious cycle. I picked him up and took him to the doctor. While waiting a lady came in with her son and noticed Lane. At 1st it was the usual "oh, I love his hair!" comment then she asked if he was sick. I said yes and briefly retold why we were there. She sat down and started talking to her son then came back over to us. She asked if she could pray for Lane. Of course I said yes. She laid her hands on him and asked the Lord to heal him, make him as He intended for him to be and asked for the peace that passes all understanding for both of us. It was very beautiful, much more eloquent than I described it. You want to know the cool part? He stopped crying and wheezing after that. He wound up being diagnosed with RSV but no x-rays were ordered, no trip to Vandy and best of all it was the last time he made that awful gasping for air sound. What is it about laying your hands on someone that's sick while you pray? I still don't know the answer to that, other than it instructs us to do so in the Bible I believe but I do know it seems to be very effective. I've tried it here since then with Lane and seen results more quickly. Well there goes seizure # 3 of the morning. Ok we've now had 4 seizures and it's still so early. This is what makes me so mad. There I've said it. I am mad at God for this whole seizure thing. I know without a doubt that He CAN heal my baby with a whisper, stop these from tormenting him. What I don't understand is why WON'T He? I do hope being mad at God doesn't buy me a ticket to hell after all the times He's carried us on this journey, all the mercy He's shown us, but it's heartbreaking to watch your baby in so much pain and fear when there's not a damn thing you can do to make it stop. I do so long for some glimmer of hope and happiness in the days that lie ahead. Right now I feel torn between clinging to the faith that's brought me thus far or turning and walking away. The consequences of either choice are eternal. But then I look at that precious child, that red haired, blue eyed angel with a heart as pure as the driven snow and choose. For now, one more time, I will reach out and take the hand of Jesus and ask for forgivness. Even if I struggle to find it in the darkness that surrounds my world as of late.