Just Breathe

Ever felt like the walls are closing in on you? That's how I feel right now. It's 12:30 at night and the only thing keeping me from walking out that door are sleeping in the next two rooms. That's not to say I wouldn't come back, of course I would, but I'd certainly make a run for it, if only for a little while...
Lane has spent most of the day screaming and what time he was calm he kept burying his face in the wedge. I guess I should have reminded him to just breathe too. At times I feel like that's all I can do.
Yesterday our neighbor came over and said she just needed to draw from my strength. She was having a very hard day caring for her mom. She wanted to know how I do it day in and day out. I told her her the truth. I don't know. I know that wasn't the awe inspiring answer she was looking for but it was real. I do it because there is no other choice, because that is what God's plan for my life is, because I love Lane. Why does anyone do what they do?
So Miss Charlotte, I hope your day was better. Mine sucked but if you were able to have a better day today by drawing from whatever strength you think I have, then it was worth it. I have had a long break from hell, I can take a few more days of it if it will ease someone else's burden.
I know this post is more rambling than usual but that's what no food, no sleep, too much alcohol and too much stress gets you. I'm the only one who reads it anyway.
You have no clue as to what someone's life is truly like unless you live it everyday with them. "Be kind, for everyone you meet is fighting a hard battle."

J. Alexander's anyone?

As usual when we're trapped in Vandy, Bill & Jean either bring us food or stay with Lane Carter while we escape for a little bit and go somewhere other than downstairs to eat. This time was no different except that because Will was on shift they decided to take me out to eat. After being assured that Lane would indeed be fine and that I had a whole floor of nurses to watch over him. I consented to go. Which now leads to the question "where?" Jean named several places, one of them being J. Alexander's. I said "you know if we go there, Morgan will be born tomorrow." Why is that?" they asked. I told them how the night before I was induced with Liam, Will took me to J. Alexander's to eat, then because I like tradition, he took me there the night before I was induced with Lane. We had even planned to go the night before I was supposed to be induced with Morgan but then Lane decided he needed to get Pneumonia, drop his sodium levels, check himself into Vandy and have my induction postponed. What a way to put off having a little sister! Anyway, we went and sure enough at 10:45 that night I woke up feeling bad. Turns out that this was the slow start to my labor, only I didn't realize it at the time. Between Lane & Morgan I stayed up all night. By Monday afternoon whatever was leaking was getting worse. We called Dr. Scott's office and left a message with Wendy. Lane's care partner convinced me to go eat and go home for a bit, that she'd stay with Lane. Either you'll have her or you'll come back here. I couldn't argue with this logic so we headed home. I called the triage nurse on the way and never got called back. I get home, take a bath and get ready to head to a hospital, I just didn't know if it was going to be Vandy or WMC. Will finally got a hold of the triage nurse and she said to go to the ER, tell them what was going on and they'd send me up to labor & delivery. In no time I was given a room, and a very stylish gown and told my nurse would be in soon to check to see if it was amniotic fluid. Sure enough it was. Well, I'm staying here tonight. Good Lord, Lane Carter is in Vandy and here I am. This was NOT how it was supposed to be! Brings us back to "man plans, God laughs". One day, one day I will learn that everything happens in His time, not ours.
I was given pitocin to speed things along and antibiotics because I'd been leaking for so long and had a fever there was a chance of infection. Dr. Scott was called even though she wasn't on call but couldn't be found so I had Dr. Ellington instead. She was awesome. I couldn't have asked for better care or a better delivery.
Everyone was called, arrangements made for Liam & Lane. Bill & Jean came. We like hanging out in hospitals together. Thought we'd give WMC a try for a change. Mallie soon arrived, I couldn't do this without her. She helped me get Liam & Lane here. She couldn't miss this one. After all this little girl was being named after her. Finally Susan arrived I had a lot of fun listening to Will, Mallie & Susan talk as I tried to stay awake. Epidurals should be considered the 8th wonder of the world. Maybe because I was in my drug induced happy place but it didn't seem that long before they said I was at a 10 and ready to go. Four pushes later, Miss Morgan Lellyette Farris came into this world. They laid her on my chest and we swear it sounded like she said "mom". Anyone who doesn't believe in love at 1st sight has never had a baby. She was so beautiful and perfect in my eyes. I had tried to distance myself from her thru the whole pregnancy because of all we'd been through with Lane Carter and Angel Baby. I learned the hard way not to take anything for granted. All that was over the moment they laid that little girl on me. I was completely in love. God had given us the greatest Christmas gift I'll ever receive. She was here and she was healthy and nothing else mattered. Over the next several days as I was surrounded by people I love. I felt more happiness than I'd known in a long time. But more than that I felt a profound sense of peace, that up until that moment, I wasn't sure I'd ever know again.
We came home on Dec. 23, Lane came home on Christmas Eve. I got my Christmas wish this year. I hope you got yours and I hope that at some point in their lives everyone gets to know the kind of peace I felt in the first few days after she was born. A sense that God is in His Heaven and all is right with the world.
God poured out his grace to me in abundance and I am forever thankful.

Praise God from whom all blessings flow

Unrelenting disappointment makes the heart sick. Indeed it seems to deaden a part of the spirit. "but a desire fulfilled is like a tree of life" Proverbs 13:12. The kind of life you might have convinced yourself you'd never know again. God gave me one of my heart's greatest desires on December 22, 2009 as Morgan Lellyettte Farris made her entrance into this world. I have prayed for this day for almost 3 years and though ultimately my prayer was answered it was not without some trials. As I look back over the year I am once again amazed at the way God works in my life. On December 20th 2008, I found out we were having a baby. I was so excited but decided to wait until Christmas Eve to tell Will. I couldn't wait to surprise him with this Christmas miracle. I bought him a lighter to engrave the baby's birthdate on and even wrote him a poem to tell him. He was so happy. The hope of new life filled me with so much joy. Christmas Eve was perfect. That night I knew what it meant to sleep in Heavenly peace. On January 23 I went to Dr. Scott and heard the words no mother ever wants to hear. "I'm a little concerned, I can't find the baby's heartbeat". I was sent for a more in depth ultrasound and it was confirmed that there wasn't one there. I walked out of that office numb. Why would God give me what He knew I wanted so badly only to take it from me? Have I not paid my dues with Lane Carter? "Delight yourself in the Lord and He shall give you the desires of thine heart" Hadn't I done that? I held up my end (or so I thought) now where was my prize? Snatched from me before I even really had time to realize what I'd been given. I confided in only 3 people that this had happened. I knew they could help me try to understand that this was God's will. On the 26th of Jan. I went in for my D&C. This experience left me with an overwhelming feeling of emptiness. Time soon healed me physically and for the most part emotionally. Every now & then something would remind me and the sadness would wash over me like an ocean wave but I never let it pull me in. We had genetic testing done to find out what was wrong and if we should try again. Dr. Scott herself called one night with the results. The baby had Trisomy 13 and wouldn't have lived even if it made thru the pregnancy. It would have had many serious health problems as well as being severly delayed. "Do you want to know what it was?" she asked. "Yes" I answered' "It was a little girl" she said. I hung up the phone and tried to take all this in. I guess God knew how hard having 2 special needs kids would be if she even lived and He certainly knew how hard it would be to loose one. So He spared me all the pain, in a way but why put me thru it in the first place? When God takes something from your grasp, He's not punishing you, but merely opening your hands to recieve something greater.
Fast forward to March of '09. It worked! I'm having a baby! Now comes the hard part. Trust in the Lord enough to believe it will be healthy. I prayed the same prayer every day. "Lord, let it live and not have Hirschsprung's and please let it be a typically developing baby." With every passing week and good appointment it seemed as if we might be granted a miracle. On August 23, we had a party to reveal what we were having. Mallie cut into the cake to find a pink baby rattle! It's a girl! This was the 1st of many "coincidences". If you know me, you know I don't believe in coincidences. Every thing happens the way it does for a reason. God took one little girl from us only to let us find out that we were being given another one. You see August 23 would have been her due date. Now it's December 20, I wake up feeling sick and uncomfortable. I hurt but didn't know exactly what it was and something was slowly leaking. This was my water breaking but since I've never gone into labor on my own and it wasn't a big gush, I didn't know that's what it was. "Coincidence" #2, December 20 of '08 is when I found out about Angel Baby as we call her. One year ago to the day. And Finally Morgan has a little red spot on the back of her head. Lane had one when he was born and Mallie said it was his angel's kiss. I took great comfort in this thought as he fought to live. It made me feel as if he had someone special watching over him, who I don't know, but someone. I believe Morgan's is from her sister. Just a little reminder that she will always be watching over her until the day comes that we can all meet her. I believe God gave me the little girl He wanted me to have, maybe with many of the same traits as Angel Baby but in a strong and healthy body. Morgan is here, she is "fearfully and wonderfully made", beautiful and healthy. Praise God from whom ALL blessings flow...

Man plans God Laughs

This was a favorite saying of Laura, Lane's EI therapist. It certainly seems that way at times. This was supposed to be a perfect Christmas. Will was off both Christmas Eve and day, something that rarely happens, and our little girl was due the 26th. Plans had been made to induce me early so we could all spend Christmas together at home. We've already spent one Christmas apart when Lane was in the NICU, I really didn't want to have to do it again. I wanted to have her on the 21st but Dr. Scott wasn't going to be in the office so we decided on the 18th. Well there was no room at the proverbial inn. All the rooms were booked for that day. How fitting. So we moved it to the 17th. Keep in mind lots of people had everything worked out for the 18th but we changed it anyway. Then Monday the 14th Lane has a bad day and sleeps the entire day and night. 2:oo Tuesday morning he starts coughing and moaning. I kept him home even though he missed jammie day at school. After the 10:00 feeding I noticed his tummy was tighter than I'd ever seen it. That's not good. Dr. Sharpe had us come in to turn down the Baclofen pump again to see if it would help. He was concerned with his listlessness just as we were. We consulted Dr. Morgan's nurse and decided we needed to head to the ER. We were given a diagnosis of Pneumonia (again) and told that his sodium levels were low. This was causing the lethargy they thought. We were admitted. It's OK. It's only Tuesday. I have till Thursday, surely we'll be home by then. Yeah right. Little did I know. We developed a plural efusion which is where fluid is leaking into the space between your lungs. Depending on the amount it can either resolve itself by being reabsorbed into the body or you get a chest tube to drain it. And yes that means surgery. After an ultrasound and a lot of run around, it was finally determined that Lane's was a minimal amount and would probably resolve on its own. Thank God! The thought of another surgery for that poor innocent baby right here at Christmas when he already had Pneumonia was sickening. And then there was the whole inducement thing to worry about. Do we go ahead or not? We decided to postpone it. Lots of people had their opinion about this but ulltimately Dr. Scott made it easy and just said she wouldn't do it. I love her. I went to see her on Thursday and we decided to try for the 28th. Good, that's settled. Of course she won't be here for Christmas but she wasn't due till the 26th anyway. Now back to getting out of here. Lane's CRP levels ( these indicate infection) were on their way down. From 400 to 200. Wow! that's great you say. Yeah, it is except that it's supposed to be like 10. Just keep giving him IV antibiotics and pray they keep droping. Then he gets dehydrated, the IV is shot and his poor little veins won't give anymore. I watched them poke and prod to the point of bruising him something awful. All the while the doctor keeps ordering more labs. Well she's not the one trying to draw these nor is it her baby that she listens to as he screams. I just want it to stop. Why Lord must Lane continue to endure this hell? Put me thru it not him.
So here it is, the 18th. They got an IV in last night and were able to draw labs from it but of course it wouldn't give anything this morning. The few drops they did get were sent to the lab with a prayer that it would be enough. None of us thought it would though. We'll wait and see. He was puffy so he was given a dose of Lasix which caused the dehydration, which caused his Potassium levels to drop. It's a viscious cycle. You can't fix one problem without giving him another. Do you have any idea of what that's like? Of how helpless and frustrated I feel? On a lighter note, Will and the nurse managed to piss off the stupid dietician and then I went over the doctor and got Dr. Morgan to get me some answers. She didn't seem to care for that too much. I have reached the end of my rope and I will do what it takes for Lane. They started in on the blood pressure thing again but yet they never do anything about it other than get all bent out of shape over it. Find out why it's always so high and try to fix it or shut the hell up.
So here we sit. Trapped. They keep ordering labs they can't get, worrying over why his sodium dropped. It came back up and then dropped a little but stayed in the normal range. We may never know why it dropped. We don't anything else about Lane, just add it to the list.
Our nightmare continues. We find ourselves closer to Christmas Eve as each hour slips by, closer to my delayed induction date and no closer to any answers or idea of when we'll go home.
My Christmas wish this year? The same as it was 3 years ago. Just to take my baby home and be together with my family. It is the season of miracles. Will we get ours?

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.

The Power of the Powerless

I love to teach. Most people who know me know this. I started, ironically, working with special needs kids (God had that one planned all along didn't He?) then on to a day care, a preppy Franklin pre-school, and finally to Liam and the kids I kept here. My greatest challenge came with a little round face angel with eyes as blue as the Heavens above. I've done well by most of these kids and have been complimented on my ability and enthusiasm for the job. I would like to tell you about someone that is a far greater teacher than I'll ever hope to be. Someone our society would regard as a taker, incapable of giving. Someone some would classify as a "burden" rather than a gift from the hand of God. Someone who in almost three years of life has never uttered a word but whose very existence in this world speaks volumes. It speaks of faith, hope and courage, of compassion and acceptance, of unconditional love. My so called "powerless" special needs baby has taught me all these.
I will care for Lane on the most basic levels for the rest of his life. He cannnot sit, feed himself, dress himself or do anything else that life requires of us. My life's calling now is to raise my "incapacitated" son, doing everything for him. I will never "hear" him say thank you or I love you but it doesn't matter. I will go on providing for him and treating him with dignity and respect. He has taught me not to need my own emotions reciprocated like I seem to need with Liam and even Will. I have learned to appreciate those fleeting moments when he does connect with me through a smile or if he stares at me with those blue eyes that seem to know so much, with a gratitude I never could have known before. I'm reminded as I watch him stare with wide-eyed wonder at those beloved puppies of his or that crazy bird Laura brought him to always delight in the simplest of things. There are far greater things than money can buy. A lesson that seems to get lost quiet easily in this town.
He has taught me compassion for other people. We all have our cross to bear, some are just heavier than others. I now realize that what you think someone's life is like may not be anywhere near the truth. "Judge not, lest ye be judged". I have a whole new understanding of this now. I've learned to accept that this way became my journey and I will not only face it with courage but embrace it and sit back and marvel at how God is using this to mold Liam into an young man with character and wisdom beyond his years. I can't begin to know how far reaching the lessons Liam is being taught now will go. I know with every fiber of my soul that he will be a better person because of his "powerless" brother. I know Liam has walked every step of this journey with the grace of an adult not the grief of a child. In Liam's eyes they are equals. This is not a child not fully understanding the severity of his brother's disabilities, this is complete acceptance and unconditional love for who he is. He has shown Lane nothing but respect, love and dignity. There are a few adults who could learn a thing or two from my little boy. He answers his friends questions straightforwardly, never making excuses for him because there are none to be made. He is simply his brother or "his baby" as he used to call him. I am grateful to be their mom. "And a little child shall lead them" Isaiah 11:6.
Lane has taught me courage. First as I watched him fight to live and now as I watch him struggle to learn the simplest of tasks. I know that I will never give up on him. He has given me the courage to face every challenge we are presented with. Be clear, fear is still a big part of my life. You never know what's going to go wrong with him at any given moment. And of course there's the fear of the unknown. What does the future hold for that round faced little angel that's snoring in the living room right now? How long will God allow me to hold that baby in my arms, tuck him in with puppy, kiss him good-night, drag him to therapy and doctor's appointments, sing to him, read to him, pray over him and love him? And my greatest fear... how will I ever let him go if that is God's will?
The answer to that lies in the greatest lesson that Lane Carter has taught me. FAITH. I've been brought to my knees before my Father's feet many times during this journey. Lane Carter has given me a priceless gift. He has brought me to my Saviour. I've believed in God my whole life. I've never doubted that He existed or anything like that. But Lane has made ne hunger for a deeper understanding. I know that I must "praise Him in the storm". Lane would not be here if not for the grace of God. I've seen God at work in many ways since we began our long road home. His healing touch is still with us. I know with every ounce of my being that Lane will be made perfect and whole one day. One day he'll be able to run to me and throw those fat little arms around me and say I love you mommy. One day I'll be there to witness it. I take great comfort in knowing that some day Heaven's gates will swing open wide for my baby. "Blessed are the pure of heart, for they shall see the face of God".Matthew 5:8 Something in my soul whispers don't get distracted with what you can see. It is for freedom that He came and freedom we shall have.
My heart aches over what Lane's life could have been but rejoices over what it is. To be able to say you were the reason someone knew God is a quiet an accomplishment for someone so "powerless" and broken. This is what Lane Carter's legacy is. Pretty powerful if you ask me.