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Some of you may or may not recall, but almost exactly a year ago, I posted a little story regarding my cousin and his wife who had recently lost their 7 month old son, Tobin, to a a genetic condition called CHARGE syndrome. Well as it turns out, my cousin's wife is scheduled for a c-section this upcoming Wednesday to deliver a little girl, whom they have named Hazel. Thank God, all of the prenatal testing has indicated that everything looks good for Hazel to be a 100% healthy baby.


Regardless, after having spent 7 heart-wrenching months in the hospital with Tobin, and with Hazel's birth coming almost exactly 1 year after Tobin's death, my cousin and his wife are still on high emotion and anxiety levels as Wednesday approaches.


I'd ask for prayers that everything go as smoothly and as easily as possible for their family as they bring a wonderful new life into the world.

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  • 4 years later...

I just wanted to share something that my cousin posted to Facebook on Sunday for Fathers Day. It made me think of this thread, the previous thread I posted about my cousin and our experience buying them a Cincinnati Reds ticket package as a gift, and about the thoughts and prayers I've received from and given to my BGP friends over the years I've been a part of this community. Although Tobin is no longer with us, my cousin Travis is now the father of two beautiful little girls...Hazel and Ellie. Travis, his wife Heather, and my entire family is grateful beyond words for all three of their children. I just really felt like Trav did a phenomenal job of putting all of this into perspective and down in words, so I wanted to give you all a chance to read it:



I used to joke that when someone said that they thought about something every single day, something that was of such significance to their existence that they just couldn’t help it, that they probably had a day or two from time to time that they just missed that thought. I thought that until I had a son. I now have two daughters whom I also think about often, but I had a son that I think about every single day. His name was Tobin and he was born on September 4, 2012. He died seven months later and I think about him every single day. Sometimes I just remember him when I think about how many books I read sitting in his rooms at Children’s Hospital, or how sitting in those rooms for over half a year combined with my years as a musician have given me super human waiting skills, or how the smell of Purell foam hand sanitizer makes me feel like I’m trapped in that room again, or how watching the Price is Right every day made my wife and me feel sane, or how I watched Scott Rolen strike out to end the Red’s season that year against the Giants and how I’ll always harbor some resentment to San Francisco sports even though they are in another division, or how the woman that used to come in to clean the rooms was the highlight of every day for me because she was the only person there that made me feel normal about life, or how I had a special way that I’d hold my hand to the side of his face and then push the middle knuckle of my index finger against his cheek (because that was our handshake). Sometimes I just start crying while I’m driving. Sometimes I don’t have any specific memory at all, but I think about him. I can’t help it. I think about him every day.


Tobin had something called CHARGE syndrome. We didn’t know that exactly until after he was born but we knew from very early on in the pregnancy that something was wrong and basically waited for most of that time for something to happen that would prevent him from coming into the world. But that didn’t happen. We kept finding out new things at more and more ultrasounds and myriad tests and screenings. He had clubbed feet so he’d need orthopedic braces… He was missing one of the four chambers of his heart so he would need at least three surgeries… Chromosome tests hadn’t come back showing any of the common birth defects or syndromes etc… Maybe he has something called Turner Syndrome from what we can see… My wife and I just kept going along and deciding we would just do what we needed to do as the situation unfolded. “This is our son. This is his life. This is what we’re doing.”


He lived for almost seven months and I think about him every day. I’m not always sad. I can joke about the whole thing. His life was the same as everyone else’s; it was just shorter than most people seem to think is right or entitled or something I can’t quite comprehend. I don’t believe he is in heaven. I don’t believe in heaven. I don’t think he had a soul or that any of us have souls that exist as some immaterial version of our selves and that can be reunited after our bodies stop working. I do believe that he exists in what I learned from him and from what I can say about him. That’s why I’m saying this now. Up until now I’ve never talked about him all that much to people that didn’t already know. I was reserved about talking while he was alive because I didn’t want a bunch of people telling me things that they thought they had to say or that they thought I was strong or that everything happens for a reason or really anything at all. Many times even now I’ve told people and they don’t know how to react. I don’t expect them to know. I often don’t even know yet how to bring his life up, but I want to because his life is important to how I see the world. I didn’t say anything then because it just was. Sometimes you don’t have to say anything. I’m saying this now.


Tobin’s life was his life. He couldn’t see or hear or speak and he had severe difficulty breathing or even pooping on his own, but he did accomplish at least the latter two for brief periods of time and he surely did exist just as all of us exist. Children are balls of autonomy and I think that at least in that regard he was as much alive as any of us. And I loved him. Not in a way I could articulate then but that I can see clearly now as I interact with his sisters. He showed me that it’s all a big wait. He taught me that very little matters other than how you react to it, and I strive to react with healthy acceptance to both good and bad things. I strive for it so much that I barely even believe there is good or bad, but that’s beside the point. I learned from him that my friends and family are as great as I’d always suspected that they were, and that my life is really about as wonderful as any life can be. His life made me more grateful for my wife and for my family and my in-laws and my friends and for the hospital crew and for all kinds of things that I still find as I process his life and how it has shaped mine following.


And for all that I am not sad for my son, but I am still sad. Sad in a way that I wish I could tell him what he’s done for me and for everyone that encountered him in his short life. But he wouldn’t have understood then and he’s no longer here to understand now. But I’d like for others to know that he lived. That’s all. Maybe in time and by writing I’ll let those that want to speak about him know they can ask me questions and that I’d like to keep talking about him to learn more. For a little while he lived. He made me a father. Because of him I’ll always be a father. I have two daughters that make it very easy and truly joyful to remember and know every day that I’m a father, but I was already a father because of Tobin. That’s all.


Happy father's day.




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