My life with the Sullivan boys

A lot of people in our lives have been gracious enough to ask "Is there anything I can do for you?" Almost always my response has been: No we're fine, thanks. But that's not completely true. Growing up the way I did I learned a an early age to take care of myself, by doing everything by myself . Well in our situation with three young kids, one with special needs, I can't do everything myself. This seems a bit shameless, but what the heck. I've decided to create a list of things friends and family can do to help my family. 1. Call or e-mail us-even if we don't have time for a long conversation, a message telling us you're thinking of us really feels good. My friends Pat, Lisa and Debby have called just to let me know they're thinking of us, it's nice to have a cheering secton. 2. Bring us dinner anytime -what a huge favor, we now have a freezer in the basement that houses ready to heat meals. It saves me so much time. Thank you to Susan and Dixi...

I'm mourning the loss of some of my friends who turned into The Gingerbread Men... I've shared this reading before with friends. It still touches me and I read it often. The Mother at the Swings by Vicki Forman It's a Sunday afternoon. My nine-year-old daughter Josie is at home drawing cartoons with my husband and I'm swinging my six-year-old son Evan at the park. Evan laughs and giggles and with each wide arc of the swing, his smile grows ever larger. The mother next to me smiles herself and says, "Boy, he really loves that, doesn't he? I mean, kids just love to swing, don't they?" Yes, I think, kids do love to swing. But the reason my son loves to swing isn't the same reason her daughter, in the swing next to us, loves to swing. My son loves to swing because he is blind and non-verbal, because he has what is termed "sensory integration dysfunction" and requires enhanced "vestibular input." Swinging gives my son the kind of sti...

This is a fantastic writing from a mom of a child with special needs. I warn you, it's a bit political... I know nothing about special needs. Posted 10/17/2008 3:02 AM CDT Let me repeat that, I know nothing about special needs. Yes, my son Elias has multiple disabilities that affect his balance, movement, vision, communication, and breathe, and yes I’ve immersed myself in the disability world by reading books, blogs, articles, laws, and enough bureaucratic paperwork to fill a truck, but I am merely a tourist in this world, hoping to learn the culture so I can advocate for my son. I can’t claim to be an expert. I’m not even an insider. I’m just a mom who loves her child. For McCain to say that Sarah Palin “understands special needs better than almost any American I know” just shows how out of touch he is with the disability community. Does he know anyone with special needs? Because surely they would know more about living with disabilities than the people who love them. To claim t...

As photograped by wendybphotos.com

Well Dermot is eating again, hooray. He had three square meals today. He seems to be in better spirits too. In case you're wondering, this is a picture of Dermot when he was 5 months old having his first taste of rice cereal. I just thought it was cute. We also found out today that Dermot does not have any of the scary terminal genetic or mitochondrial diseases that he was tested for last month. I didn't make this news public so if I've been on edge for the last few weeks you now know why. I can stop thinking all of the morbid thoughts I was thinking and move on, for now. I also fired the nanny this week, bummer. She had a different style than I'm used to and didn't think it would work with our family. No worries, I have an interview lined up on Monday for someone new and more resumes coming in... I learned a lot from the process and must always remember that I'm a grown-up and am entitled to have things the way I want them. We redecorated the house today and I...

What a different world this would be if people would magnify their blessings the way they do their troubles.

So the new issue for us is to get Dermot to eat all of his food. I can't tell you how stressful it is to feed Dermot these days. He's sick of the whipped cream, and is only eating about half of his meals some days. I don't really know what to do. I'm calling the doctor tomorrow. He's out of the office because of a family emergency. What about my family emergency!?! I want to give up this diet. It weighs on our thoughts all the time. Although Dermot's well-being weighs on us all the time anyway. It's a constant dark cloud walking around with us... I sometimes get physically sick from the pain I feel. I run to release my worries, to relax and to forget for a little while. It works. Plus I'm back to my pre-pregnancy weight, so I've got that going for me. We'll keep plugging along, we have to. It's our 6th wedding aniversary this Sunday, I remember our wedding like it was yesterday. Wow, what a carefree life we lived. As you can tell I'm feel...