I kept a special Journal from the time I knew that Devon was going to come into the world until the time he left it. Following are some excerpts of what I had written; first for Devon to read himself some day in the future, then for us to read in the future, and remember.
For my son. Feb. 28th, 1998
I have so many things to say to you, and you are not yet even here. I started writing to you in my diary, then decided to give you a place of your own. I want to call you by name but your Father and I have not settled on one for certain yet. But I know who you are. I know when you sleep and when you like to move around. You are not nameless to me. With every passing day you have become more real to both your Dad and me. Your father is amazing, you know. Some day I hope you really find out what kind of a man he is. Some day I hope you grow up to be that kind of man. Every once in awhile we both marvel that you are alive and well, and will be with us in such a short time in our world. I know that in the future you will probably grow closest in a special bond with your father. That is how it should be so that you know how to be a man. Then one day you will no longer be ours, but your own person with your own life. But for now we have a bond that no-one else will ever share. Hopefully this journal will attempt to re-create our thoughts and hopes and fears as we wait for the most momentous arrival of our lives...our first born son. Always know that we loved you first of all.
September 15, 1997
Today is Steve's 38th birthday. Today I took a home pregnancy test and it came back Positive! What a day! I am so excited but I don't know what to think or how to feel. I don't know what I'm doing! Even when I sneeze or hit a bump in the car I get nervous. I logically know that is silly, but I can't quite convince myself yet. We won't tell many people until Oct. 21st which is my first Doctor's appointment. They say by then I will be able to hear the baby's heartbeat. The baby's heartbeat!! I am going to be somebody's mother! Scary! I know I'll be having lots of prayers for this baby...family and friends from all over! We'll take all the prayers we can get! I'm going to have a baby! Where is that reality feeling?
September 21, 1997
Today I went to the store and stocked up on healthy foods. Boy will this be the tough part for me! Ha. Today the baby also logged it's first Instrument Cross Country flight time. I have no morning sickness, no fatigue, nothing! So on a paranoia attack I bought another test and took it. Yup, still two lines! I told you I didn't know what I was doing!
October 21, 1997
Today was amazing. Today I heard my baby's heartbeat! Steve came with me. The doctor came in and set up the earphones-he had a set for me and a set for him. I heard my own heartbeat first, and then there it was! Very fast and strong. The doctor couldn't find the heartbeat again at first for Steve, but when he did Steve just opened his eyes up wide and smiled. It was amazing! I called everybody and told them. He's in there, and his heart is strong! Hello, Baby!
November 13, 1997
I'm in the last week of the first trimester. That's amazing! The whole first trimester passed without many reality checks. I still feel the same! I can't feel the baby at ALL yet! I've had some real bad migraines but otherwise I've been fine...my stomach isn't even hard yet. I went to the doctor's office today, where I tape recorded the heartbeat to give to my mom and Ann. It is so neat to hear your heart beat, little one. It lets me know that you really are in there and doing great. I feel a little unreality, but I love you already. The doctor asked me if I wanted to do a blood test to determine Down's Syndrome and other birth defects. I said no. Even if you are born with any of these detectable defects, I would not terminate you. If something IS wrong, you will still be perfect, and you will need a strong, loving family. I want so much for you! To be brave and strong and honest and loving and HAPPY and Godly. Self-confident.
November 19, 1997
I can feel you! Not much, but I can at last feel you! I'm kind of excited. My ultrasound is scheduled for December 17th! I hope we can tell if you're a boy or a girl!
December 17, 1997
Today I saw you! I got up, drank 24 oz. of water, and we went to the doctors for the ultrasound. I saw you waving at us! She told us you are a boy! I have a son. She scared me at first because she kept asking questions about negative pregnancy tests with you. Finally she just said you were small for the age you were supposed to be by one week. I saw your fingers and arms and toes and head and spine and heartbeat. Steve was asking the ultrasound lady all sorts of questions about your health-all the toes there, could she tell about mental health, all that stuff. He was concerned about you, and loved seeing your little feet and arms waving around. You were very active in there, boy! We called everyone and told them you were a boy. Cathy was pretty excited because she was glad for a boy to carry on the Stants name.
December 18, 1997
As I am laying here writing this, I feel you, moving! It feels like little bubbles or fluttering! Hello, son! For Christmas I bought my mom a big 8x10 picture frame, silver, with "Grandma" etched across the top and "You hold a special place in my heart" etched across the bottom. I put your first photo in the center of the frame for her-your ultrasound photo!
January 18, 1998
Tonight I told Steve that I preferred the name Devon. We've had a terrible time with your first name, son, so I hope you like it! I can picture a strong man named Devon just as easily as a cute little boy. So, unless another name reaches up and grabs us, you will be Devon Richard Stants. I think it's a good name. A strong name. Well, Devon, I can feel you move, and I can see you growing. I know your name and I'm looking forward to meeting you. I'm a little scared, but excited too. I have the highest expectations of you. You have a lot to live up to if you want to become half the man that your father and grandfather are! They have heart, and courage, and convictions. I admire them very much. I see Steve looking at little baby boys in restaurants now-just watching them. As do I. You have so much potential-you can be anything you desire. I will support you in anything as long as it is legal, moral, and makes you happy. Sleep well, little one! I love you, my son.
February 8, 1998
Tonight you lost your great-grandpa Johnson. He was 92 years old, and I am sorry he could not hold my son and know him. Your daddy was talking to you for awhile tonight. You kicked at him and he finally felt it too. I hope you recognize your daddy's voice when you are born. It was a nice moment. I have felt you move so much today. It always makes me smile to feel you. I feel so protective of you already. You mean so much to me and I haven't even seen you yet. I will love to meet your eyes the moment you are born into this world. Sleep well!
March 7, 1998
Two days ago I pulled out all your little clothes and put them away in a dresser. I am starting to get ready for you. Those clothes are so tiny! It's hard to picture you in them. I haven't felt you move much the last two days, so I'm glad to feel you so active tonight as I write this. Everyone is eager for you to arrive...about 11 weeks to go, son! Are you ready to see my face? I wonder how it feels to be the man. When you grow up, will you feel what I feel when you have a son on the way? That's such a strange thought. One generation at a time! Goodnight!
March 11, 1998
Today we told everybody else we were naming you Devon Richard. Everybody seemed to really like the name. Your Grandma Chiles took a little getting used to the "Devon" part, but she sent me an e-mail later that just said "I discovered last night that the name 'Devon' is Irish and it means 'poet'. I like it. YMLY". (That means Your Mama Loves You, by the way. You'll know that little anachronism too!) Richard means "Powerful ruler". Your name says in part what I hope for you to be-a sensitive yet strong man. Again, it is a good name. Be proud of it! Today I went flying with a student and did steep turns and crosswind landings. He was new at it, so I hope you enjoyed the wild rides we had today! I wonder if flying will be in your blood as much as it is in mine. Usually children don't like whatever it is their parents do, but flying airplanes is special whether your folks do it or not. Flying is in my and your father's blood both. Since your blood was created by our blood, you may not have a chance! And with two instructors as parents, you will have to be good at it! I just hope you enjoy it too-and don't kill yourself! :-) We love you, Devon. Almost 9 weeks to go until you arrive. I can't tell if it's dragging or flying by anymore!
April 19, 1998
Four weeks-you are due this time next month! Tick, tick. I'm still flying airplanes and your dad and I just took a motorcycle ride yesterday. I'm glad I can still enjoy this stuff with you so close. I just never have gotten very big yet! Not many women can continue this type of lifestyle within 4 weeks of giving birth. I feel fortunate. You have been a very good baby on me so far! I am starting to fatigue easily and have been needing naps. I guess that's no surprise at this time. Today I gave each of your blood grandma's and great-grandma's (5 all together!) a book to fill out about their lives. I hope they all do it for you. Some day it may mean a lot to you. We have your car seat here too! We're about ready for you!
April 20, 1998
Well, son, you gave us a bit of a fright yesterday and today. See, I haven't been feeling you move. Plus I gained weight, puffed up, and had the other symptoms of bad things. Then when I couldn't feel you move, I got scared. I told your dad and he was lying on you trying to hear your heartbeat or feel you move. He was feeling you through me, trying to make you move. I kept waiting for you to move, so I couldn't sleep at all. Finally I woke up at 5 am for good. So did Steve. We just lay there together and didn't talk. This morning I called the doctor, and they had me come in and do a non-stress test. I was so glad to hear your heartbeat!! I had worried about all sorts of crazy things in the moments before they hooked me up. The doctor said you were fine but he wanted to do another test next week just to be sure. Your dad was so worried too. We both logically knew you were probably okay, but you are our first and only son, and our hearts worried us where our minds said you were okay. So stay healthy Devon, okay? Don't scare us anymore! We love you son!
May 15, 1998
Last Tuesday I went in for my doctor's appointment. They did another non-stress test. Your heart rate was all over the place...it even dropped of a few times. That made me really nervous. Even the nurse said "This kid is all over the place!" The doctor said you were fine, and that was okay, but I still didn't like it very well. I was scared something was wrong with you. You still aren't moving as much. Are you cramped in there or something?
May 30, 1998
You're here, Devon! You are
two weeks old today. I couldn't write in here until now for some reason. As I
write this you are sitting in the swing staring up at the living room fan. You
probably can't see it but it's fascinated you these two weeks. I just can't believe
you're really here. I wrote the whole story of your birth in my diary so I won't
write it all down here again too. You are beautiful. You have big, bright eyes
and a very expressive face. You have long hair that's reddish brown. You have
a very sweet personality and have only cried when hungry. You mean the whole world
to your daddy and me already. Your two week checkup was fine. You are in the
15th percentile for length, the 25th percentile for weight, and 75th percentile for head
circumference (you have a big head, boy!). Your daddy set you up with a website with
a few photos on the internet and an e-mail address of your own-for some reason! He's
such a proud papa! Everybody is so happy you are here-we all can't quit staring at
your precious face. At night you've been sleeping in bed with us, and you are so
tiny! You love to curl up next to me on the bed in a ball and fall fast asleep.
I lie there and watch you breathe, and you are so precious and little. I
can't keep my eyes off of you. Neither can your daddy. He'll come over and
look at you curled up on me and he'll smile and say "He's so precious!"
You hated baths at first, but you're doing much better now! I missed so much by not
writing right away, but I just couldn't. We love you Devon, welcome to our lives!!
June 1, 1998
Today I got your first photos back from Meijers. You are so beautiful Devon! You have no idea how much we love you! Yesterday we got your birth certificate and social security card in the mail. That makes you real to the rest of the world too! You are such a good baby. You are very alert and aware and content. Such bright eyes. We have so much hope for you. Last night we saw a show were a family had three sons. One had a serious leg defect and was crippled for life. One died during a heart surgery, and the third had Cystic Fibrosis-which is terminal. We are so very blessed and I never want to forget it.
June 11, 1998
You smiled! June 9th we got several smiles out of you! Your smile is so beautiful! I call you "squeaker" a lot because you squeak when you eat. It's really cute. You're asleep as I write this, and you are making little cooing noises in your sleep. You're adorable! For three weeks we've had you sleep in bed with us. You sleep so soundly there! You will bury your head and face in my armpit, curl up against my body, and stick your feet in my stomach. You whimper in your crib, but the second I put you in bed with me you go out like a light. Some family is worried I'll roll over on your or ruin your sleep habits. Well, we aren't worried about that but this was just a transition for you. For the last two nights you've slept in your own crib by yourself next to us in bed. The first night you were restless, but after that you've been fine. It was just a big adjustment going from warm womb to solitary bed in one day! So, we eased it for you and you have never had a problem sleeping since. It was right for you! You were an angel today-wide awake and alert for hours, eating further apart than 3 hours, sleeping for hours. I got lots done today! Thanks! You're such a "Punkin" as your dad said when he walked in tonight. He misses you during the day. Sleep well, we love you!
July 16, 1998
Dear Devon, you are 2 months old today! I got your two month photos today, and they turned out really well! You wouldn't smile, but you were cute. You know some things that I love about you? I love when your forehead wrinkles up when you're thinking. I love how you cry and look so pathetic and cute and sad. I love how when you're mad your face turns red and your forehead turns white. I love it when you're nursing and you gaze up at me. I love it when you fall asleep in my arms nursing, and you smile big in your sleep on me. I love the big grins you give me in the morning that lights up your whole face. I love when you stare intently at me and coo and "talk" to me. I love watching you grow and change. I love when you hold my hand and I love when you laugh. I love you!
July 17, 1998
Oh, Devon, you had such a rough day. So did I! This morning was your 2 month checkup. The nurse practitioner said you had a cold and that's why you threw up mucus and had trouble eating. She also said that your neck muscles weren't as developed on one side as the other. So now I have neck exercises to do for you to help develop both sides. You hate them. Tonight, for once, it took me an hour to get you asleep you felt so bad and cried so much. I laid down in bed next to you, nursed you even though you'd eaten only an hour before, and held you in my arms until you finally fell asleep. I love you, baby. Get better, okay? It hurts me when you don't feel well. Oh, yes, you cried real tears today too! Those are the first real tears you have ever shed. I hope you don't hold today against me even though I took you in to get poked! The words "For your own good" sound pretty hollow to me when I watch you cry like that. Being the mommy really sucks sometimes.
August 10, 1998
I love the smell of your skin and the softness of your hair on my cheek. I love when you look into my eyes and I love it when your head rests on my shoulder and your arm rests on mine in a "hug". I love picking you up in the morning and seeing you stretch awake. I love looking at you sleep during the night with your tiny hands curled up under your chin. I love how your bottom lip sticks out when you're sad in a little pouty face. I love seeing you and your daddy playing together. I love when you wrinkle up your forehead in concentration or that big-eyed look of surprise on your face when something new happens. I just feel my heart fill up with love when I think of you. If I go away for an hour or two and leave you with your dad or grandma, the first thing I do when I come back is look for you. I feel incomplete when I'm away from you. It's like a part of me is missing. I love you so much, son. You will never know how much. I can see how you could be a source of a lot of pain for me in the future. I love you so much that I am vulnerable to you-and to anyone who hurt you. I don't know what I would do without you. I don't mean as in when you grow up. I want that. I mean if anything were to happen to you, it would take part of me with you. You are loved by a lot of people, Devon! Consider yourself lucky, special, and loved-because you are!
September 2, 1998
I've been having a milk supply problem, so I took you to the doctors today to be checked. They found out you are now 11 lbs. 10 oz. which is okay. You also have an ear infection. The doctor also found something a lot more serious. He is running some tests on you. Your legs do not support any weight and they basically just flop around or lie uselessly. You never kick them and rarely even move them. Your arms are very weak too, and offer no resistance when grabbed. So he told me he wanted to run some tests on you. Today you got blood drawn to be checked for Muscular Dystrophy. I am so scared for you. If you have MD, you will die. It is a genetic disease, but there is no history of it in my family so that is my only hope right now. If that test comes back negative, you will get a CAT scan on Tuesday to look for Cerebral Palsy or some other brain disorder. If that doesn't come up with anything, a specialist-a neurologist-will be coming up from Indianapolis to see you. This news was a big shock to me. We have decided that whatever these tests tell us, and whatever your fate, we will give you the best life we can, and we will love you forever. There are dozens of people praying for you tonight. The doctor told me there were rare cases where a baby doesn't develop properly then just catches up and is fine. I pray that is you-a rare case that turns out the best. It's so hard-you are curled up asleep on me right now, and earlier you were smiling and laughing and it is so hard for me to see you and not know what is the matter with you. It's a punch in the gut, this waiting. Life or death. I love you my baby, and I hope you grow up, have a family of your own, and read this journal entry to your grandkids and laugh at how very, very scared I am today. I love you, Mom.
September 3, 1998
Today things didn't improve. I called them to see how long the tests will take, and they said the middle of next week! Then they said they didn't get enough blood so I had to take you back this morning to give more blood. They couldn't hit a vein and they tried both arms a dozen times or so. Finally they got a "hit" but they could only get a small amount of blood. I told them that was it, no more tries, they could work with that or find another way to do the test. The nurse had pity in her eyes as you cried and cried for the 20 minutes or more we were in there while they poked you. Now we have to wait to find out whether you have MD or not. All the way home I cried and wailed and cried some more. I think I bothered you because you cried a little too once I started. Oh, Devon, you are my world and I can't stand this. If you have a disease, we will give you the best life we can, but I just need to KNOW one way or the other! Last night we just held each other and cried ourselves to sleep. You know what? Everybody keeps telling me I'm so strong. I have tried to be strong my whole life, and you know what? I don't want to be the strong one anymore! I want to be weak and taken care of and for my son to be FINE. This feels unreal and un-attached. This can't be happening. Things like this only happen to other people. Right? God?
September 10, 1998
Your CAT Scan and MD results came in as I started writing this. Your CAT scan was normal and your blood test was negative!! No Cerebral Palsy, No Muscular Dystrophy!! Oh, thank you God! This is a huge weight off of my shoulders. I don't even know how to tell you how relieved I am, Devon. You may very well still have something, but now that I know it's NOT MD, I can rest much easier. Anything you may have, I think we can handle just fine! Family and friend support has been amazing. We love you so much, and I am just SO thankful for what it's not! ON to find out what it IS now!
September 13, 1998
We found out that if we prop your arms, you can lift your head-and body-from your stomach! You have very strong neck muscles! That's encouraging. How can you have a neuromuscular disease with such strong neck and stomach muscles? But why are your arms and legs so weak? Start working those muscles, boy! You do well in the water, and you move your arms all the time. You just have no muscle tone. Your doctor visit went great today. Your 4 month checkup passed great, with the shots not even making you cry! You are developing right on schedule other than the weak legs. You move your head a lot further and more frequently, you laugh, you smile, you sit up straight, you grab for objects, you suck on individual fingers and bring your hands together. You hold objects well. The doctor said he'd wait for the specialist to see you and not see you until your 6 month checkup! Whew! If it were bad they'd want to see you a lot sooner, right? Your muscles have to be stronger by then! I insist!
September 28, 1998
Well, I took you to a chiropractor. She said you have a tight muscle bunch on the right side of your neck, and it could cause muscle weakness. BUT she can't figure out why both your arms and legs are weak. Usually it's the left or right side. If nothing else you don't mind going and I doubt it hurts your condition. We go down to Indianapolis Wednesday to see the neurologist. I doubt he'll do anything the first visit but charge us an arm and a leg for a consultation. You move your legs more now so there is some improvement. Not much, but some. Where you can move at all, Devon, we can strengthen you. I'm afraid of whatever disease you may have. You're my sweetheart and I want you to feel great! I researched off the Internet every disease that could cause "hypotonia" or muscle weakness. I found like 40 of them, and made a spreadsheet with symptoms and treatments. Most are manageable. You may be crippled, but after the MD scare we can handle that! One was bad. It was called Werdnig-Hoffman disease but you have strong neck muscles, a loud cry and a strong suck so that can't be it. It's fatal by 2 years of age and when I read that I thought "Thank God it isn't that!" I got your 4 month photos taken, and you grinned in every one of those 6 poses! The photographer wanted you to lean on your knees and push your head up for a full face shot. You can't do that and I had to explain why. I was sad to see other, younger babies do that-and bounce in their mommy's laps. You can't do that either. I so want you to be okay, "normal". Your grandpa rubs your legs with a magnet every day to make you grow stronger. In the back of my mind, I worry every day. We love you.
September 30, 1998
Oh, my baby. Today the specialist told me that your symptoms best match Werdnig-Hoffman disease, better known as "SMA Type I." Spinal Muscular Atrophy. It's fatal within 2 years. I remembered reading about it and thinking it was the only one I couldn't handle out of 40 neuromuscular diseases for children. We take to you the doctor this Friday to do the EMG. So we are back on Terror Train. I have a feeling this time. I think this is it. I think you have SMA. I think you are going to die, my baby. I am terribly afraid that I have clothes for you in the closet now that you will never wear. And that you may never get to read all these journal entries. That you'll never know how much I love you. So many fears. Three days left to know. I love you so much, my baby. So I again make this wish. Please read this with your children asleep in their beds, and smile at your mama's fears. The day you read this for the first time, give me a call if you're far away, or come give me a hug if you're close. Because today I fear that day will never come.
October 2, 1998
My sweet boy. Today I learned that you are going to die. You will never read this. You will never know how much your daddy and I love you. You will never know how many tears were shed around the U.S. for you tonight. Your EMG showed conclusively that you have SMA Type I. You have less than two years to live. We WANT you to be healed. We WANT a miracle. But barring a miracle, we want your time here to be joyous and painless. I feel like my heart shattered into a million pieces and each shard is piercing me. I feel like a huge hand is crushing my chest. I can't face this yet, and have not even begun grieving for you yet. I fear that when I do allow myself to feel, I will lose my mind. Mostly I think of the things you will never do. Your photos up to a year that may never be completed. Never sitting, or crawling, or walking. Never playing basketball. Never saying "I love you mom" or knowing I was saying it to you. Your big bright gray eyes look into mine so trustingly, and you smile at me, and I feel my heart shatter all over again. I see the curve of your cheek and your long eyelashes resting on your cheek while you sleep and I feel that crushing sensation in my chest again. You are such a part of who I am that when you are gone I will never be whole again. I love you so, my baby. I only wish you could know that. In heaven, maybe you will. Here is what I wrote to our friends and family today: "Well, the test was conclusive. Devon tested positive for Spinal Muscular Atrophy Type I. We haven't discussed it with his doctor yet so I don't have specifics. The only things I know are that he will gradually lose all capability to move, have trouble sucking and feeding, and not be able to cry or breathe well. He'll never sit up or craw or walk, of course. He will have respiratory problems, and may end up on oxygen or a respirator if we choose to try to continue his life when it gets to that point. He has, from now, approximately 7 to 15 months to live. Most are gone within one year. I guess I don't have anything else to say right now. I appreciate the prayers. Mostly I just don't want him to suffer. Most people don't have the opportunity to know how many days they have left on this earth. We know for our Devon-within approximation. We will give him the best life we can for the time he has left-and make more beautiful memories in this time period than most people get in their lifetimes. Right now we are trying not to be too sad, because we don't want to waste one precious day with him. HE doesn't know, of course, so he smiles and laughs at us. Our goal in life right now is to keep him smiling. Please keep praying that we can accomplish this. Nothing is harder in this lifetime than trying to smile for your baby with the knowledge that his days on this earth are going to be so short-and so hard. I'm so glad God loves children. I know that when the time comes that Devon will be welcomed home with open arms. Right now that is the only thing keeping me sane."
October 3, 1998
I am still writing to you, even though you will never read it. I have cried a couple of times, but not once for real. I am afraid that once I begin I will never stop. Losing you is incomprehensible and so unfair! You have so much potential and are such a sweet and wonderful boy! I can't imagine you gone. If I try I will go insane. I don't want a life without you in it! You are so sweet, sleeping on your daddy. I need you, Devon. You are a part of me and with you gone part of me will be gone and I will never be whole again. Today your daddy asked if I would write or plan a bit of your obituary. How can I do justice to you, my baby? How can I write something to be read at your death, something to view on your tombstone? What mercy is there in such a tiny coffin? How am I supposed to stand there and accept the condolences of people who are grateful that it didn't happen to them? I knew life would continue to throw trials at me, because it does most people. But how am I to go on without you? All the cute phrases and neat poems in the world don't make this easy to take. Your bright gray eyes, your expressive face, your little dimples, your 1000 watt smile, how you grin with your mouth wide open, the shape of your head so like your fathers, the smell of your skin and the softness of your hair. The light touch of your hand gripping my finger. The utter concentration on your face as you play with Big Bird, try to talk to me, or watch us-or TV! So many people, so much love. I don't think I can do this. If God would do it, I would trade my life for yours--in a heartbeat. I love you so, my baby. I love you so. Please don't leave me.
October 8, 1998
Well, we've known about a week now. You make it impossible to be sad. Last night for the first time you stuck your tongue out at us while you blew-you gave us a raspberry! I found out yesterday that when you do die from not being able to breathe, it could be by carbon dioxide poisoning basically. Not a suffocation thing. Thank God for small favors. I just don't want you to hurt, my baby. I just don't want you to suffer. Such a sweet boy. We love you so.
November 1, 1998
We still don't have the results of your muscle biopsy, but nobody has any doubt any more. Your neck is weaker than it used to be and it is so sad to see that. I really can't think about it. We are going to see Dr. Bach in New Jersey. He claims that you have a chance to live more than a year or two. We shall see. To be honest Devon, I don't even know what I wish for you: A life in paralysis, dependent on a respirator, or death as an infant. That's why you are in God's hands. You always were. We dedicated you to God in September, and we meant it. You are his child and your future is solely up to him now. You are very handsome. I want you to know, whether you read this journal someday or whether you know it in Heaven, that I love you more than myself. You are so very precious to me, and you will never be forgotten.
November 15, 1998
Well, Devon, the trip to New Jersey was very productive. Dr. Bach says you can live. Your oxygen saturation and CO2 levels were both just fine, and he said your breathing was great-almost like a Type II not a Type I! He said you didn't need a Bi-Pap yet. That's great! But after NJ, you went on a food strike. You wouldn't take a bottle and my milk was low and I couldn't get it to let down what I did have. I fought you and my own body every day for a week. You lost weight. They talked about feeding tubes. I cried and worried. I forced food down your throat. You cried. I cried. You kept dropping weight. Finally I put rice in your milk, built up my milk supply, and fed you formulas with cereal for calories. Finally you started eating and slowly gaining weight. Thank God. You went up 3 oz. in the last 4 days. That's good. Keep gaining, Little One! Today you ate GREAT and I am so thankful!
November 21, 1998
We went to see a Gastrointestinal (GI) doctor who wants to put a feeding tube in you right now. I said no. I'm waiting and weighing you every day. As long as you don't lose weight consistently, we will put it off. I don't want you to get it because it would be like SMA wins Round One. I know SMA will win the war. It is taking you day by day. Your arms don't move as much, your neck and trunk muscles are weak now. You can't hold your head up hardly at all any more. Your daddy and I don't think about it so we can enjoy you as you are-a perfect, sweet son. We made a decision about you two nights ago. We decided that when the time came we are going to put you on a ventilator rather than let you die. This decision has been pure hell for me. I don't want you to be paralyzed and machine kept. But others have happy lives like that and we can't imagine you not in our lives-handicapped or not. You're so skinny but you're still so big to me! I'm probably silly for fighting the g-tube. I love you so much. I smell your skin and feel your fuzzy head under my chin and hear your breath on my cheek and I just feel like I'm holding a special piece of Heaven in my arms. And when you look up at me with your big gray eyes and break into a big smile just for me that lights up your whole face; I feel pure joy. And when I watch you sleep so deeply with your long eyelashes resting on your cheeks and your head resting over my heart and your fragile back under my hand, I feel peace. Pure peace. You are the most important part of me.
November 28, 1998
Well, here you are in sunny Florida! This is your first year here if you don't count pre-natally! This is our 6th Thanksgiving in Stuart, FL. It's a great condo. You are six months old, so you're interacting quite a bit with us. You've been on the beach and dipped your feet in the ocean, you've eaten at the famous Conchy Joe's, you've chilled on the sand. You're in our annual Thanksgiving photo sitting up at the table with us. You are SO handsome! Your smile lights up the whole room. You're do so well lately. You also do great in the airplanes. I wish you could be a pilot too someday and join us in the air. I wish you could grow up and be the man I know you are capable of being. I wish you were healed completely, but barring that I beg God that you will be happy. Your dad and I love you so much we would give anything we have for you-including our lives. Always know you are loved.
December 30, 1998
Only two days left to 1998. Weird. In the last month your eating habits have become erratic. You'll eat just great then stop eating. You've quit gaining weight, but haven't lost any. After Thanksgiving you slowly declined eating until one day you wouldn't eat at all! Then you pigged out, gained 4 ounces in ONE day, and I thought you were okay. Nope. You've yo-yoing. I guess a feeding tube is in your near future. You were less than impressed with our first snow of the year. Christmas was wonderful and you were completely fascinated by the tree lights. Unfortunately I caught a cold. I tried so hard. I washed my hands until they chapped. I breathed the other way every time I fed you. I didn't touch your pacifier or bottle nipple or hands. It didn't work. Yesterday you got a fever of 102. You sleep all day, wouldn't drink, ate only a little and fussed at night. I gave you Tylenol and your fever came down to 100. Today was the same but I couldn't get any fluid down you at all. As of today you are totally weaned and are on the bottle only. You just can't do it. I dried up before I was ready but with you refusing to nurse I didn't have much choice. Bad timing. Nursing would have helped you with this cold. But even a pump didn't help. Anyway, you were fussy and sleepy and feverish all day. By night the mucusy nose kicked in. Since you had only had 1/2 ounce of formula to drink ALL DAY, I took a medicine dropper and dripped it down your throat one drop at a time. I got 5 oz. down you that way. You acted like you really appreciated it, and didn't fight at all but opened your mouth for me. Your daddy kept suctioning your nose-which you hated. I boiled everything and you are now in 'cold mode'. Poor baby. Your oxygen levels are still 98-100% so you're fine for now. I'm terrified this will weaken you and/or put you in the hospital. The doctors said it would. Here we go, round three with the serious fear roller coaster rides. Please be okay, Devon. I am so tired and scared and tired and scared and tired. Please snap out of this without hospitals! Please protect my son, God.
January 8, 1999
Well, you're fine! You gained 8 ounces in 2 days. What a guy! So you fend off the feeding tube yet again. :-) I love to see you eat. I love you! We can't imagine our lives before you came along and we can't imagine our lives without you. We pray for you to be healed but I don't think my faith is as strong as your grandpa's. But you have the Johnson stubbornness and the Stants strength. You should be fine. We love you Devon. Always.
February 13, 1999
It's the day before Valentine's Day. I do so poorly writing in here! You will be 9 months old in 3 days. You go boy! You are barely gaining weight now, but you don't choke and can still suck fine. Your breathing is still fine and your length shot up onto the chart. Whoo-hoo! You have some neck control, your ankles and arms move a lot, your upper arms move more now, which is new, and your legs move more too. On the changing table you can bring one leg over to the other. In the bathtub you move constantly. All in all you're doing well, baby! We had thought of adding a little brother or sister for you, but we're scared to death they will have SMA too. Would you like to be a big brother? You're doing great! I'm going to start you on a special diet as soon as I get it together. I'm willing to try anything to keep you here with me! You are so cute. Always there is hope. I love you baby.
March 9, 1999
Today we got our blood DNA tests back. You have deletions in both Exon 7 & 8, and Steve and I both have the recessive gene. And, buddy, you are not eating right either. You haven't in three months now. The last four days you ate 23 oz. which is great. But before this you lost about 11 ounces. I suppose the g-tube is this month. I was so hoping you would beat this. You wouldn't have the gene deletion. You wouldn't need the feeding tube. You'd never need a ventilator. You'd LIVE. I need to believe it. I love you and you have so much to offer this world. Now you have a cold which is no good, but thankfully it seems to be just as mild as the other two you had. Thank God! A cold puts a huge amount of SMA babies into the hospital and so far you have never been. We are very fortunate!
March 10, 1999
You ate 27 1/2 oz. today! It's a RECORD! Thank you, Devon! Today is my birthday (27) and you gave me a card and a balloon and your cold is about gone again. You are the best baby in the whole world. You really are! 27 ounces on my 27th birthday. Was that my present? :-) OH! Since December of 98 you've been saying "mama"! It's so cool. For awhile I didn't think you knew what you were saying, but I think you do now. Steve and Ann have heard you say "Grandma" too, but I haven't. You find and chew on your thumb a lot too, which is cute. You are still doing well strengthwise. No complaints.
March 18, 1999
Guess what? I saw tooth #2 for the first time yesterday! You are getting to be such a big boy! You grasp objects more now, and do this head shake thing to play with your daddy and me. "no-no-no" you shake your head back and forth and smile and smile. You also love to be hung upside down, and you tilt your head backwards and roll your eyes back in your head and arch your back to say you want to keep going back. And you'll laugh and laugh and give a big 'gummy' smile. You love to play and be adored. And when I leave you with your Grandpa, the second you see him you'll lower your eyebrows and glare at both of us and cry. It's so funny and cute. You know I'm leaving. But you're okay 20 seconds after I walk out the door. I guess you realize it won't help then. Smart boy! :-) I love you!
March 25, 1999
Today you got a Kid Kart and big bouncy seat! Sue sent it to you-her daughter used it before she passed away of SMA. She sent this to you knowing you'd need it! I hope when we get it adjusted you love it as much as she did! You looked like such a big boy in it! We also got your Bi-Pap machine yesterday. You weren't overly thrilled with all that air up your nose, but you adjusted pretty quickly. I was very proud of you! You are such a good and good-natured baby!
May 9, 1999
I just haven't felt like writing in awhile, Devon. Today is Mother's Day. My first Mother's Day with you, not pre-natally. You gave me a great card, a beautiful e-mail, and a "bag" of goodies. You even signed the card yourself with a little help from Daddy. We went for a Corvette ride, then we went for a plane ride, then went and picked up some lunch and drove out to a park and ate. We came home so you could nap, then you sat in your Kid Kart out on the deck and watched your grandma plant flowers and your daddy wash cars. Right now your daddy is out there painting your shelf red for me, only he doesn't know I know he's doing it. What a sweet guy, huh? Let's see...you hated the Bi-Pap after that first day, so we got you a different one. You will tolerate this one fine for naps now but refuse to wear it at night. And your eating is down. For two weeks you ate only 9-11 oz. a day, and no solids. I called the GI doctor 6 times and she wouldn't return my calls. We are scheduling your g-tube surgery for sometime the up-coming week. I hate to do it right before your birthday, but I don't want to wait any more either. You won't eat solids any more so it's bottle only. You are eating less than 15 oz. per day and have lost a pound and a half. You even ended up in the hospital last Saturday, May 1st. Steve was in Texas at Jeff's wedding. You ran a temperature of 103.1 in 45 minutes flat, had a pulse of 200, diarrhea, and ate only 7 oz. of food all day. So at 10:30 pm your grandpa and I drove you to the ER. Your chest X-rays were clear, thank God, and your bloodwork was fine. They admitted you for dehydration prevention. The IV was a nightmare. It took them over an HOUR to get it in and you were screaming your head off the whole time. We finally got a room at 4:30 am and we crashed. They Tylenol suppositories worked well even though you gave one back to them via diarrhea. :-) By the next day you were eating again and I took you home. Your daddy got home around midnight and missed it all. You came through fairly well. You have 3 IV spots that are yellow now, but otherwise you seem fine. You'd even smile at nurses and doctors-unless they touched you! I didn't blame you. Your Grandma & Grandpa & Uncle Hank & Aunt Ruth came to visit you a lot, and I got to eat all your meals. I was only supposed to feed you water but I sent Grandpa home to get your formula anyway. You needed to be fed, on an IV or not. Nobody said a word. I was supposed to leave the bars up on your cage. I refused. Nobody said a word. I knew what was best for you and wasn't going to let them dictate it. I love you baby. Happy Mother's Day! Please be here for me next year too!
This is as far as I got. Sometime I will put the ending on here...