“You won't realize the distance you've walked until you take a look around and realize how far you've been.”
It has been ONE YEAR since your life changing SUCCESSFUL reconnection surgery (saying that still awes me). A whole entire year, of you being healthy and I would say 95% perfectly healthy and normal. Yes, there are some things that you shouldn't eat, or eat much of, because as amazing as your bionic belly is, it has its limits. You are now 28 months old. And you are amazing. You talk really really well now. You just moved into a big boy bed, and you are so proud of it and your "new" room. I thought moving you out of the crib would be an ordeal, but you still like surprising me! You haven't gotten out of that bed once, without being told you could get up. Even when you wake up in the morning, you will call out and wait for someone to say you can get up. BUT...don't take that to mean you are obedient! Oh no Riley...you definitely have a mind of your own. Don't get me wrong, you ARE a sweet, loving boy. But, you have a mind of your own about when and how you want to do things. If you know you are going to do something wrong, you will say "Wiley go time out...." before you say what it is you are about to do that will result in your going to time out. Before you were even born, I knew you were going to be trouble! But I love you more than you will ever know, and I wouldn't have you be any other way.
I am so hopeful that your struggle with your intestines is truly over. I would not call the issues that remain for you a "struggle" and while potty training is still a ways off, I am hopeful that it will go well for you. You have begun to really notice the scars on your body lately, and I try to tell you as much as I can how much I love your beautiful belly. I hope you are always proud of it and not ashamed of the long gnarly scar on it, or any of the other scars all over your body. Those are true war wounds right there buddy. A long, hard war that you fought and WON!
I want you to never forget that your life is a true miracle. When doctors at a top teaching hospital in our country tell you that your survival and recovery is between you and God, and all they can recommend at that point is to pray...the fact that you are here today proves that.
I love you endlessly Riley Bear. It has been a long, hard road the majority of your life, with so many setbacks. And while I would never wish your ordeal on anyone, I would go through it ALL 10x over again for you.
"Victory is sweetest when you've known defeat"
Love you always,
Dear Dr. H,
I am sure I have thanked you many many times for all that you have done for Riley. But now, that an entire year has gone by, without you having to peep into my Riley's insides, I am feeling more grateful to you than ever. Did you know that I pray for you every single night, and I have since I met you? Sometimes, in the middle of the day all of a sudden I feel like I need to just say a quick prayer for you also. It's a hard hard job you have. And I will admit, I did not like you in the beginning. You showed up at the bedside of my BABY and are grim and cold and basically said that if he didn't die in the next couple days, you would see what you could do for him. It's probably a good thing for us both that I busted a few stitches during Riley's transport, because you simultaneously devastated and infuriated me at that moment, and I wanted nothing more than you chase you down and whack you with an iv pole. Violent sounding I know. But I was a new mom, hormonal and doped up on drugs and my insides were rotting out. Give me a break here!
Then my dislike turned into "I don't have to like him as long as he's good at what he does". And Dr. H, you are VERY good at what you do! If it hadn't been for your skill and good judgement, Riley would either a) have died (more than once..ugh) or b) probably be on a transplant list for new intestines/liver and likely die while waiting on that list which really just brings us back to option a doesn't it? He challenged you at every turn. He leaked...oh man did he leak. Repeatedly. He got infection after infection after infection. He had raging reflux (still does by the way) and trying to determine if he was launching puke several yards away was due to reflux or an intestinal blockage was a pain. He presented you with impossible situations and you were as surprised as the rest of us when he came out on the other side of those situations a champ. And I fought you. I pushed you. I asked about a gazillion questions about EVERYTHING to do with Riley, his intestines, intestines in general, his liver, his stomach, his broviac, the list goes on and on and on. And you answered them, patiently and throughly. You were straight with me. You gave me the answers straight forward, not flowered up, but not cruelly either.
Overtime, I really began to like and respect you. I realized, that you weren't being cruel that first meeting. You have an impossible job. You are presented with these sick and dying babies and have to look at their parents who are looking at you like you can work miracles and give them the truth...you can't work miracles! Only God can do that. And there were times when you said as much. And for every success story, there is a failure. You see children every day who you can do NOTHING for. When you first saw Riley, he was in a state where he would have been harmed if operated on. So you had to wait for him to get sick enough, that it was the only choice. Operate, or he'd die. He may die during the operation, but if you don't he'll die. And if he died, you would have to come out, and look us in the eye and tell us. I want you to know that I think you are an amazing person for doing the job that you do. And I will continue to pray for you, forever. Because my Riley Bear is here, at home, in his big boy bed tonight, because of a job well done by you. And because you never gave up on him. Thank you for never giving up on him. He is still a fighter, just in a different way now.
I will forever be grateful for all that you have done for Riley Dr. H. More so than I can ever adequately express. And I hope, on days when things haven't gone so well, that all the children you have helped, against all odds, like Riley, will warm your heart and give you the strength to wake up the next day and do it all over again.