My life with the Sullivan boys

What a year it's been, each month giving us new challenges, new joys and new heartaches. January: 5 months pregnant, I jetted off to visit my brother in LA for the weekend, only to return and rushing to the hospital to be with Dermot as he suffered an awlful bout of RSV and pneumonia. Six nights later he came home, I swear he's different. No longer able to suck his thumb and drink efficiently out of a bottle, Dermot left something at Children's Hospital that I wish we could have back. April: Owen turns four! Just days before I'm to deliver #3, we had a glorious time at his party. All his friends and classmates joined him at Pump it Up! Yipee! May: Ryan Joseph Sullivan joins our family after a day and a half of labor, one push is all it took! What a blessing! So begins the battle for sleep. August: Countless visits to and from family! Ryan had his first airplane ride at three months, thanks to uncle Bill! Ryan sleeps thru the night for the first time! September: Owen sta...

Someone I Love By Lori Hickman Someone I love relies on me in ways you will never understand. Someone I love endures pain and challenges that break my heart and renew my spirit at the same time. Someone I love is unable to advocate for themselves for things that most of us take for granted. Someone I love will never have the opportunities that every child should have. Someone I love will need unconditional love and support after I am gone - this frightens me to the core. Someone I love encounters pity, stereotyping responses, and prejudice at every turn, because they look, act, and/or learn differently than others. Someone I love has needs that require me to allow "outsiders" to have power and input in areas that should be mine alone to meet. Someone I love will continue to look to me for everything in life long after other children are able to assume a place as part of the world. Someone I love has needs that require more time and energy than I have to give. Someone I love ...

How did we get here? It was November 17th, 2006. Joe had left earlier that day for his annual hunting trip out to South Dakota. My brother had just arrived to drive up to my mom's place in McGregor, MN with me. I wanted a little help since I'd be with Owen who was 2-1/2 and Dermot who was almost four months. The car was packed, I was trying to calm Dermot down. He was trying to recover from a cold and was crying hard, something he did quite a bit in his first few months of life due to a case of reflux and pyloric stenosis(google it). I was struggling to get him to stop crying, and then, he stopped instantly. Whew, I thought. I set him down in the bouncy chair and finished putting everything in the car. I came back and looked over at Dermot and he was still in the exact position he was in before, I thought that was a bit odd so I went over to him. His eyes were fixed to the left side and he was pulsing his left hand and foot ever so slightly. I thought that was strange so I call...

Merriam-Webster's definition of control is as follows: 2 a: to exercise restraining or directing influence over : regulate b: to have power over : rule c: to reduce the incidence or severity of especially to innocuous levels It's funny how obsessed the world is with the illusion of control. It's funny how the quest for control can make a person insane. It's also funny how out of control we really are. I can plan for things to happen. I can make sure I have the right supplies for any situation, I can tell everyone in my life what to do, when to do it and why to do it, but inevitably they will do it the way they want to do it. Tell a four-year old how to brush his teeth and he will insist on using a different toothbrush, putting the toothpaste on himself and most likely he will go to a different bathroom to get away from me. It's maddening! Prepare yourself for the daily occurrences in life and unexpected things will always happen. As I hosted Thanksgiving dinner this...

How's the diet going? It's going pretty smoothly in the last few weeks. Dermot's partial onset seizures are gone , now we are just fighting with the Tonic seizures. He still has around twenty of those a day. If you didn't know what to look for you wouldn't notice his seizures. His left arm goes straight up, his eyes look up and his body tenses for a few seconds, then he just resumes what he's doing. The brain is an big fat mystery! Dermot's neurologist wants to try just the diet for another month, then he might want to try a different drug for the tonic seizures. I'm not for that. Apparently the most common side effect for the new medication is sleeplessness. No thank you! We've had enough of that in the last 2-1/2 years. We discovered what meals Dermot will eat and have decided to sick to them. Here's a sample of what Dermot eats each day: Breakfast: 1/3 c. of whipped cream two tsp. ground beef 1/3 slice of american cheese two Tbsp. of butter 1/...

Ryan's sitting up all by himself, I'm so proud! I was going to go into some long essay about how important milestones are and how easily they come to most babies, but I won't. I'm just happy with my little Ryan today!

So, here's something I've noticed and it's a big fear of mine. I fear that Dermot's becoming invisible. Not really, but to the outside world, to the "nice" people we meet or already know. To friends and even some family members, it seems as though he's not there. The polite look and then quick look away, the attention that gets showered to Owen and Ryan is not the same for Dermot. Why is that, I wonder. I don't really wonder. I've been there myself. I was the one who shyed away from anyone different. Not on purpose, just out of fear. Not knowing how to treat a child or what to say, do I touch him? Can they hear me? Can they see me? I'll just pretend they're invisible. We've gone to several outings, the country club, Target, the Children's Museum and so on. I've started to notice. So, I want to tell you about Dermot. Dermot is a beautiful boy. He smiles, he laughs, he screams with delight. He has more grunts and moans than most b...