3 Years Old

(This was supposed to go up yesterday, October 6th, but my connection was down).
It is still hard for me to believe sometimes, but 3 years ago today, on a sunny October day at 2:40 in the afternoon I gave birth to our son Dylan Thomas. I can remember all the details of that day and it seems the next 2 months of his life so clearly. Darren and I were so happy to have a son, the first grandson in the family on both sides, and after the death of my brother it just felt like a second chance in some way. Dylan was such a handsome boy with a perfect little head, his dads cleft chin, and the biggest and brightest eyes I have ever seen. Even from the day he was born all the nurses and his pediatrician commented on his eyes. I should have known then that they were trying to tell me something.

Those next two months with Dylan were glorious. It was such a warm October and the leaves were so beautiful. I took him for walks everyday. He and I formed such a strong bond and connection, it was evident to everyone that he was my boy. But then. In November I started wondering and trying to remember about when it is that a baby can put weight on their legs. With 4 years between children the details of things like that were not as sharp. I had noticed that whenever I tried to get Dylan to resist with his legs and attempt to stand, I got nothing. I played it off and thought nothing of it really, just that I was pushing too much too fast. There were several other instances like this; not being able to hold his head up when on his tummy, not a lot of movement from him. I should have realized. In my heart, I knew, I KNEW something was wrong but could not bring myself to face it. I was too happy, it was too perfect. "He is just such a mellow dude" I told myself, don't worry. Damn.

To find out, at 2 months of age that your son is not going to live to the age of one, and may not make it to 3 months old because of some disease that you have never in your life heard of — there are no words. That first night that we had him in Primary's Hospital and the Doctor was telling us the possibilities: Botulism, a type of Muscular Dystrophy, some thing neurological, or a relatively unknown but common disease called SMA. I looked them up on the Internet the next morning before we went back to the hospital and once I read about SMA, I knew. It fit. I did not tell anyone that except my mom, who still doubted because she had to, wanted to, but deep down with her medical background she knew too.

When I think back on these 3 years, my mind just keeps coming up with the things I would have done differently. I wish that I would have spent each night down there at the hospital instead of coming home. It would not have made any difference in regards to Dylan or his care necessarily, but that is time with him I lost out on. I wish that my mind had been more open and aware, so that I could have read and understood more to help provide better or different care so we could have had him longer. In reality, I don't know that I had any clear thoughts at all from the day we found out until the day he died; and for at least a year after.

The first two summers after he died, I went to his grave almost every day on my walks. This year, I have been only a few times. It is too hard for me to look at his face on his grave, the marker has a picture of him in it, and see this baby who my new baby looks so much like. In so many ways our new daughter has helped us heal and we are so grateful for her and we know how blessed we are that she does not have SMA. But, it is hard too to look at pictures of Dylan and see our daughter and vice versa. It is not an excuse for why I don't go, just the unfortunate reality of genetics.

I don't really know where this post is going. Just the rambling thoughts from a broken heart. I wish I could tell people what it was like taking care of him. What we went through those 9 days in the hospital with the tests to determine it and the horrible confirmation of the disease. How do you explain to people what it feels like to have to tell your parents that their grandchild is going to die? Do you have any idea how painful that is? Or worse, what it feels like to look at your spouse everyday and see your child in their face? To look at them and realize that if we had not married, we might not be facing this, that it is our fault for having fucked up DNA that caused this tragedy? How do I explain to people what the days we spent at home with him doing suction through his nose every few minutes to keep him from choking to death was like? Or waking up in the middle of the night, multiple times, with his oxygen alarm going off because he is not getting enough air and is suffocating, so that means we have minutes to use a cough assist machine, suction, and all our inner-strength to save his life? Do you know what it feels like to sit next to a crib with your child in it while he is hooked up to various machines and think to yourself "I just want this to be over...I don't want him to suffer any more." and then realize what that means? How horrible that must make you feel as a person? How D must have felt when he had to replace the feeding tube and he watched Dylan turning gray, knew that he was dying and he and my mom fought all night to keep him alive so that Dylan would not die while I was out of town on fucking business? Any idea how great that made me feel when I came home and found that out? Think D can get that image out of his head? Or how about making the decision with your husband at 3 in the morning that he has suffered enough, we cannot stabilize him and if we call 911 they will hook him up to a trach machine and then our choices for him are over, so you let him die. Do you understand that, it is basically letting and watching him die?! Do you have any idea what it feels like to watch your child die in your arms as you hold him and cry over him, realizing that this is it? It is just like the say in the movies, the light in their eyes just goes. I will never, ever get that moment out of my mind. I am glad that he died in my arms and had that love surrounding him to the end, but that night will haunt me forever. I seriously, with all my heart, would NEVER wish that pain on anyone, it is consuming and unbearable.

I am sure there are people that think "of course it is bearable, you made it, you're still alive." True, that is something you would think...if you had never been through it and are an idiot. Of course I made it, that is not the question, the important question is did I want to? No, at times I did not. At times I still don't. I know that I am a strong person, I know that I can handle a lot because I have. More than my share. So maybe I was put here to be strong for D and help him through it. I don't know. I just know I did not ask for this to happen, no one does. But I do know that God did not do this to me. It took me a long time to figure that out. After my brothers death I blamed it on God and pretty much turned away from Him. The death of Dylan really brought me back to God, I had a greater understanding of the need to rely on Him and could truly see His purpose in my life. I am not going to get preachy, just stating my feelings people.

I see other little boys that are the age he would be now and I wonder what he would be like. What kinds of things would he be in to, what would his personality be like? And then, I break down. So, I try not to do that too much, I just try to look at those little boys with their parents and smile at the joy they must be sharing. I look at them and I thank God that they are OK and say a little prayer that they get to do all the things in life that my little boy never did. I can tell you this for certain, nothing will make you appreciate your family, friends, and taking each moment as it comes more than losing a loved one. Particularly a child.


Originally I did not mean for this to be a depressing post. I knew I had to write something and just could not let the day pass, but this went farther into the sadness than I meant to, and I am sorry. I just have been thinking about him so much lately and I needed to get this off my chest. I did find the video that was made by a family back East during the FightSMA convention in 2007. I went to that one as it was the year after we lost Dylan and the first year of my chapter with them. This family was making a video to show and hopefully reach a lot of people to make them aware of SMA. I was interviewed for this piece as were other families, but the did not use any footage of that, which is good as I am sure I was a big crying mess. The woman in the interview that talks about SMA and the research, etc., is Dr. Swoboda who took care of Dylan. She is phenomenal, seriously one of the best Doctors on the planet. I am forever amazed at her ability to treat this disease and face this diagnosis with families over and over again, yet still retain her incredible compassion. (The week she saw us there were 3 other cases of Type I, all of them are now deceased.) Dylan is in this video however, right in the front the last baby before the shot of the water. This video will give you a very good understanding of what treating a child with SMA Type I is like.





Invisible Heroes - Full Version @ Yahoo! Video

So after watching that if you are wondering what can you do, do this.

And because, as you know, music is a part of my life I have a playlist of some songs that remind me of Dylan. Beautiful Boy we sang to him all the time, that and Sonny by Mary Black, He's My Son was played at the funeral and it pretty much captures how we felt. I never listen to that anymore. The last one is Held by Natalie Grant. My best friend Sharon brought me that song literally days after he died and said that when she heard it she thought of me, that it was written for someone who had lost a child and she hoped it would bring me strength. It does, I listen to it quite often (thanks Sharon). So, here is the playlist and with that, I am done talking about it for awhile.