This is a "record" or some thoughts I have had through the journey of SMA and its various stages-from when I found out about the disease my son had to the process of accepting it-and beyond.
It's funny about life. I just read a quote from Stephen King that said "The world has teeth and it can bite you any time it wants to." I've had a few things happen to me during my life. Some people have easier lives and some people always seem to be in crisis. I am somewhat in the middle of that road. I have had some very high highs and some very low lows. Life has balanced itself out in the end, as I think it does for most. I thought I was pretty strong. I thought I was ready for anything. I was wrong.
There are a lot of horrible things that can happen to a person during their lifetime. The one that is afflicting us is facing the death of our infant son to Spinal Muscular Atrophy Type I.
It's funny. People tell me I'm strong. That they admire me. That I seem to "handle" it so well. Sometimes I do feel strong. But they don't see the times I start to shake for no real reason at all. The times I feel the panic rising up in me like a tidal wave, so loud in my ears that it deafens me. They don't see the times I walk out of the room so my son won't see me in a moment of despair. What am I supposed to do? Walk up to people and share with them something terribly intimate and painful, something they'd really rather not have to know even existed? Force death and despair on them? Yes, people tell me I'm strong, but I know the truth. I know I don't have the luxury of self-pity because it's not about me, it's about my child. And then you find out you are not the only one in this situation. That there are 500 families right here on the Internet facing the same thing and who knows how many more not on the Internet facing it as well. You find out you are no stronger than anyone else. That you aren't as strong as you hoped you were. That you are stronger than you thought you could be. That you aren't alone. You find out that everything you feel and think has already been felt and thought by a thousand families a year or ten or thirty before you and your son came along. That next week someone new will come along and say "My son or daughter is dying. What am I supposed to do now?!" and the whole cycle begins again.
You know what the hardest part of SMA is? It is not what people think. People think the worst thing about SMA is the death of your child. Granted, that is one of the worst. But the worst part of SMA for me is not facing the thought of the actual death of my child. It is watching him die in front of my eyes daily. Watching his head begin to flop around as he loses control of his muscles day by day. Watching him roll over one time-and finding out it will be the last. Sitting him up in my lap and seeing the concentration on his face as he tries to stay there on his own-and fail. Picking him and up watching him hang down in my arms like a lifeless doll. Seeing others hold him with his legs hanging down un-moving and his arms increasingly becoming the same way every day. Seeing him cry when I try to feed him more than he can handle. Seeing his chest become shrunken in as the disease ravages his respiratory system and wondering when the time will come that he can no longer breathe on his own and what will we do then? Seeing the bright eyes and the huge grin on the face of my son who doesn't yet know what he should be able to do by now. Watching his weight plateau and knowing that decisions need to be made now. Do we go through the surgery for the feeding tube into the stomach? Do we wait? If we wait too long he could be too weak to get it when he needs it and thus could starve to death. If we do it too soon the surgery could weaken him unnecessarily or he could have troubles coming out of the anesthesia and be stuck on life support for the rest of his life-if you choose to go that route rather than taking him off and letting him die. Life and death decisions and if you make the wrong one your child is the one to suffer. Watching time become totally screwed up. Where a day feels like a year as I watch him undergo testing as he screams and cries pitifully and looks up at me like "Why aren't you helping me?" Where a day feels like a year while I try to get enough food down him to keep him from starving. Where a year feels like a day as I know that each day passing is bringing us closer to the time he will no longer be in my arms. Wondering about contractures and scoliosis. Wondering when all his functions will become paralyzed-such as breathing and eating and excreting and even the ability to blink-or throw his radiant smile at us. Wondering if he'll ever be able to say "Daddy" or "I love you". Wondering if he'll live long enough to know what is happening to him-and wondering if you want him to or not! It is a daily death.
Some days are managed better than others. Sometimes you forget and you are strong and you are not sad. You are happy to have him here and share in laughter and games and watching his rosy cheeks and new teeth and drooly smile and bright, old soul eyes that are wise and happy and sad and innocent all at the same time somehow. All mothers of SMA babies know exactly what I mean. Some days you see the proud, proud look on his face as he sits in his first chair that allows him to sit up like a "big boy" or see him light up all over as he grasps a lightweight toy in his hand and waves it in front of his face. As a parent you never take a moment for granted. You take a million photographs and take them to see your loved ones and you thank God for every day that goes by without a hospitalization or major trauma. You rejoice in the little things...the day he moved his legs out of the water, the day he ate 25 ounces, the day he maintained a little neck control, the day he said "mama" for the first time and you knew it was a miracle. Most people don't know how long they will have with their loved ones and when you do know it is shorter than most-unfairly short-you can take advantage of every day and every moment like so many people wished they had done after their loved ones were gone. You never get a day back, so spend it wisely! And no matter what happens, no matter how bad SMA can get, you never regret having had the privilege of meeting this beautiful soul in this weakened body. This child is as close to an angel as we will ever probably see.
One mother said it all very well, I thought. I will copy what she said here as it is exactly what I believe every parent feels. Some do not get past the initial stages, which is a tragedy for the child and their life. But more parents are stronger than you would ever believe. Here is what one mother posted on an SMA Guestbook:
"When Molly was diagnosed with Werdnig-Hoffmann's, I was told to take her home and enjoy her. Enjoy her, I thought, HOW? It was a crazy notion. I had a hard time even holding her, she felt so broken in my arms. All of a sudden, in the blink of an eye, this was not the baby I knew, the baby I had bonded with-- a little girl who would take ballet class, chubby thighs in a pink leotard, daddy's girl who would one day run and jump squealing into his arms upon his returning from work, a pesky younger sister into all of her brothers' things and irritating them to no end. I was grief-stricken. It was as if, in a way, Molly had already died. I imagined the months ahead would be nothing but torment and torture while we waited for the inevitable. For the first few weeks I barricaded myself in the house, I wouldn't answer the phone, I didn't feel like eating, and a sick knot had settled in my stomach that I thought would never go away. I tried my best to take good care of Molly and to be strong and positive for my two boys, who needed their mom more than ever. But I was a mess! Then something strange and unexpected happened. I began to bond all over again with Molly. I started slowly, but with much enthusiasm, to get to know and love the child I had carried in my womb and given birth to. The REAL Molly-the little girl who was there all the time, but had carried a secret with her until she was six weeks old. I started to do what I thought was impossible-take joy in my child. And, oh, what a sweet baby she is! So good. So pleasant. And a smile that makes my heart leap. I enjoy Molly for who she is NOW. I don't love her because one day she will star in the third grade play. I don't love her because she is destined to be her high school homecoming queen or basketball star, or because she will graduate college with honors. There is a pureness of my feelings for her that is unexplainable. The only thing to say is that it is both painful and beautiful. I still have moments of great sadness for Molly, and the journey I am on is not fun, but taking care of Molly is nothing close to the burden I imagined. Taking care of Molly is a gift. It's not one I would have willingly chosen, but I am able to understand and accept the unique blessings Molly brings with her. I grieved for Molly once, with her diagnosis. And in all probability I will experience unimaginable grief for her again in the not too distant future. But for the present, I am happy to be spending time with my adorable daughter. Molly deserves a family who smiles, laughs, and plays with her without hesitation or pity. And we're doing just that. My friends think I am special and unusually strong, but through FSMA I know the truth-there are many of you out there coping with amazing grace and dignity. Your stories have offered me such comfort. I hope, in return, I can do the same for someone else."
And, ladies and gentlemen, I think that says it all for now.
April 19, 1999
5/4/99: I have since found that Molly has passed on to heaven since the writing of this letter. Our prayers go with her family.
February 20, 1999
Devon is 9 months old now. He doesn't eat as much as he should, and only weighs 15 lbs. 4 oz. But he can still suck, swallow, and doesn't choke or seem to have any respiratory problems. If I could just get him to eat as much as he needed to, he'd be in great shape! He normally now gets about 18 to 20 oz. of food and drink per day. We're working on it! He loves to smile and play, and his Daddy is his favorite toy. He has the biggest gray eyes and the best smile in the world!
March 31, 1999
Well, not much new yet! Devon is now 10 1/2 months old. He still only weighs 15 lbs. 8 oz. and isn't gaining enough to keep his doctors happy. But he still can eat orally without any difficulties-it's like he just isn't hungry! He's been sleeping all night long, every night for a month or more now, too! He's always been good about that, but lately he's been perfect at night! He's now eating about 22-23 oz. of food per day. He can move his legs and ankles some, and he moves his arms and head a lot. He's talking a lot more now too! He's been saying "mama" for about 4 months now, but won't say "dada"! He chatters a lot, and talks to us a lot-in his own language. He's a very happy baby, and is doing just fine so far. We will have a big bash on his first birthday coming up here on May 16th!
April 23, 1999
Devon has undergone some more testing-a swallow study which determined he is NOT aspirating, and a sleep study which determined that he is just fine at night! No breathing, oxygen, CO2, or other problems at this time. His eating is still the thorn in our side. Today he only ate 13 ounces of food. He is getting a lot of mouth "gunk" and it prevents him from eating properly! He doesn't choke on food and can still suck fine. I don't know if all this mouth gunk is from teething or what, but it is preventing him from being able to eat his food. He had gained weight and gotten up to 15 lbs. 13 oz. but is now back down to 15 lbs. 4 oz. We are discussing g-tubes again. I would love to be able to wait until after his first birthday since it is so close and I would hate for him to be sick or sore for his birthday. He may or may not have another one. Of course if his current eating patterns keep up we won't have much choice in the matter. But he's been laughing constantly for over a week now! He will just laugh and giggle and smile at us! He is such a happy baby-and cute too!
May 31, 1999
Devon's eating has continued to be the hard time in his life. We made the decision to go ahead and get the feeding tube put in. So on May 11th he went into Methodist Hospital in Indianapolis, Indiana where he underwent the surgery for the g-tube. They let us stay with him and carry him into the "prep room". They let us stay until they put the mask over his face to knock him out. I had requested they not use a ventilator even under general anesthesia so that we might not have the worry of him coming off of the vent. They agreed to try, and did indeed succeed. Devon is such a little fighter! They did the operation with no ventilation required! The pulmonologist flat out did not believe them and said "I don't believe it! That's impossible!" Ha. The wait was terrible. We were sitting in the waiting room for only 20-30 minutes but it seemed like a lifetime waiting to hear how your baby is doing. Finally they came out and said he came through with flying colors and that it was one of the easiest g-tube placements they'd ever done! All that fear. He spent one night in the hospital and we took him home the next day. He was hooked up to every wire and machine known to man and I hated to see him like that. I took one picture for posterity, but no more. I don't want pathetic pictures of my son, I want him as he truly is-vibrant and happy! Since then he ate orally wonderfully the week after the surgery! The next week and a half he hasn't done so well orally. He is teething his entire upper gum at once and he is drooling like a crazy baby! He can't swallow with all that gunk in his mouth! So we got a suctioning machine to help and we are thankful for the g-tube because now we don't have to worry about him starving to death on us! We have a lot of trips scheduled for the next month or two-from Michigan last weekend to Kansas this weekend to Wisconsin the next and on and on. Devon is a great little flyer and a decent little driver. :-) I got video of him this morning moving his leg back and forth. He can still move arms and legs and head, and on one of his 1 year photos he was holding his own head up the whole time. We had TWO big birthday bashes for him this month! He got lots of presents and lots of love. He's quite the guy and we love him SO much!
July 7, 1999
Devon has passed away now. He died in my arms, looking at his daddy on June 22, 1999 at 11:45 p.m. Maybe I'll put that whole story on here...maybe not. I'm kind of tired right now to do it. There aren't many words or thoughts to say right now. The journey of living with SMA has finished now for Devon and we who are left behind are the ones who suffer now. But I would rather suffer any day than see my son suffer. Thankfully, he did not and God took him before the vicious SMA cycle began and he DID start to suffer. We will never forget him and he will be a part of our family as long as we live no matter what the future holds. I ask you to remember him too. He was the most precious, special little boy I have ever known and we will never be whole without him again.
March 21, 2005
I write this six years after Devon passed away. I almost feel safe writing it since I doubt anyone else goes back and reads these pages any more. It's been so long, now it's just for me, I suppose. I miss him. I love him. It still feels unreal. I can't do this right now after all...I will try another day.
November 29, 2005
Here I am, after Thanksgiving. I don't know what or why or when the urge to write something, to do something, to change something will come, I just know that it does sometimes. I want to redo the pictures on Devon's site now that I have a better scanner and a better idea of what I'm doing. I want to scan in even more photos that aren't on here yet. I hate these green "bars" down there. I want to have something to change so that it isn't the end, which I guess doesn't take Sigmund Freud to figure out. Even after all this time, part of you still feels like it isn't real and the other part of you (as the Greenday song puts it) "bleeds just to know you're alive". You want to feel it, you want to remember and even to hurt sometimes, because they were your CHILD, they mattered, they lived, they breathed, they laughed and cried, they WERE and they ARE.
I scanned in a big photo of Devon at a year and another of Kaylee at a year. Well, here:
Can you believe those two? Blow it up and look at Devon's eyes. So sparkly and beautiful, and he had less than a month to live. I am glad that we didn't know, and I am glad that I can see his eyes sparkling...even as I look over at his sister's eyes and see them sparkling too. You know the difference I see? Cover up his nose/mouth and Devon's eyes look wise to me. Deeper. I can get lost in there...the old soul eyes he was born with in the body that had a secret. That lock of hair that is sticking out off to the side by his ear is the lock that is now in an envelope with his name on it. His first haircut lock of hair...taken right after his funeral and right before he was lowered into the ground. My precious, sweet boy.
Time keeps going by and I look around and sometimes I'm amazed that I'm 34 years old instead of 24. That my baby is 5 years old and my other babies have been gone for almost 7 years. That someone who used to be painfully shy now talks to people all over the world-literally-about very personal things. Sometimes it seems perfectly normal and other times it all gives me a jolt, a "is this for Real?" feeling. It seems impossible sometimes, when I look at pictures and close my eyes, that such a bright, happy little boy no longer exists on this earth. It shouldn't be. That little man would be7 years old right now. How can I even imagine that--and how can I not? Somebody asked me awhile ago if I felt "whole" again. It's kind of a double question, but the short answer was "no". But I have a new normal again. A new whole. I am not broken, but I am certainly changed. And within that new normal is the knowledge of what should be, what can't be. Missed opportunities, missed milestones, missed lives, missing pieces of my heart...
I love you sweet boy, I miss you.
Jan. 14, 2006
Hi Devon. I'm slowly working on updating the pictures on your website. It feels good to get good clean scans in there now, the better to see your bright eyes and sweet smile. :) It's bittersweet going through the albums again. I have photos of you all over the house, but they are a part of the house, a part of us, the rooms, and they make me smile. Going through the albums causes a little pain, too. I hate that there are no new photos of you. I hate that I can't take you to Olan Mills and get an 8-year-old photo of you this May. I am saddened that the photos I have are the only physical memories I have. That your "little" sister is five times older than you ever made it to be and that you and Sidney aren't here to celebrate Christmas with us this year. Or any other year. I see you at a year and I know you'd have a big mop of hair by now and I am sad that I have no idea what an 8-year-old boy would like for his birthday. You wouldn't be the sweet baby I knew any more, but I believe you would be a sweet young boy, it was in your eyes, your very nature. Just like your sister's feisty was in her the moment she was born. The other day she told me about a little boy who pushed her and a few other kids too. I asked her if she cried or screamed, and she said no. I asked what she said when he pushed her, and she said "I didn't say ANYTHING Mommy, I pushed him back! Hard, so he'd stop pushing me!" I was never able to do that as a kid, I was too shy and polite to ever defend myself, and Devon, I saw that spirit in you too. I was proud of your sister in a way for her ability to stand up for herself; and I would be proud of you for having a gentle heart and spirit that didn't want to cause harm to someone even if they deserved it. You trusted me so much, and you would always smile for me. If I was behind a camera, you would Always give me a smile. A real smile. You loved me sweetheart, and I loved you. We were joined together for one year, one month, and six days; all day, every day, and the piece of me that was torn away when you left is like a scar...more sensitive, different from the rest, sometimes painful, and no matter what, while not visible to most people on the surface, still always there. You were my first child, my first son, my first little love, my first big joy and your loss my first devastation. Most people think that after this many years the sense of loss fades. The immediacy of it fades, the sharpness of it fades sometimes, but the loss itself? No. Like any loss, you adapt, you put one foot in front of the other, you take it day by day, you smile and you live and most people forget. But you don't. *I* don't. I remember the little crook in your ears, the 'beauty mark' on your forehead, your Tarzan yell with your pacifier, your belly laugh that never failed to crack us up, your love of being upside down and your special relationship with your cousins. So many little things...sometimes if I'm not concentrating I can even smell you, the special smell that was just you. I tried to keep that smell on some clothes for awhile in a plastic bag, but it faded, it always fades, and now I can only catch it unaware, like a dream that if you try to reach out and grab, is gone. Dear God, I miss him, I miss him in my life. Sweet Devon, I hope that where you are there is sunshine, beauty, music, love, joy and peace. And I hope that it will truly seem like a blink of an eye until I am able to be with you again...
Visitor Number since April 19, 1999