Friday, November 24, 2006

Home is Where the Resources Are...

It's a constant topic of conversation in our home... where should we live next? We have many stairs in our condo and carrying 23 pound Mieko with her back brace on is getting more and more difficult. Plus, there's not much room for her to get around in her walker. Every year there are lists of Top 10 cities for families, singles, retirees , etc. I often wonder aboaut the best place to raise a special needs child? Where are the best doctors? hospitals? special education programs? support resources? Safe neighborhoods and decent schools are great, but there's a lot more to consider for some of us.

I've become very attached to St. Paul. There's great comfort knowing St. Paul Children's Hospital and Gillette Specialty Care are just a few minutes away. There's also the Univerisity of Minnesota in Minneapolis and the Mayo Clinic in Rochester, if we need a second opinion.

I'm very impressed with the special education services in St. Paul schools and Mieko's not even old enough to go to pre-school. She's been getting special ed services at our home since she was about 6 months old. The teachers, therapists, and social workers are dedicated and compassionate. Most of the staff I've encountered at the Rondo Early Childhood Special Ed program have been with the district for years and have a great depth of knowledge.

There is very little the school hasn't been able to provide for us. They have a vast lending library of toys and equipment. Mieko's walker, gait trainer, chairs, benches, bath seat and much more all came from the school. If it's not the right size, there's a wonderful Occupational Therapist who adapts it for us. There are also play groups and support groups for the parents. We really couldn't ask for more, except maybe more money in the budget to expand these programs. Even though my hubby would love to move to the burbs (he works out there), I think we'll be staying put. Financial resources are another big consideration, but I'll leave that for another day.

I realize just how good it is when I meet other families who aren't so fortunate. We recently met a mom with a T18 baby from Nebraska. They live 3 hours from ANY hospital. One hospital agreed to take their son as a patient, only if the parents agreed to sign a Do Not Resuscitate Order. The family discovered this was illegal. Their son is now getting the care he needs at Children's Hospital in Minneapolis. But it took reaching out to some other T18 families through the Support Organization for Trisomy (SOFT) to help make it happen. Just another example of why we need each other.

So, how do you think your area rates for special needs kids? Wouldn't it be great if someone actually did this kind of nationwide research and made it easily accessible?

Tuesday, November 21, 2006


I thought there is no better time to start this blog than Thanksgiving. This is now Mieko's third Thanksgiving. I remember getting the Trisomy 18 diagnosis at about the 21st week of pregnancy, just before Halloween. Every holiday, birthday, family gathering, all I could think about was whether she would ever experience what we all take for granted. She has surprised us all. It's hard to think of anyone being a long-term survivor at just two and a half. But in the trisomy world, Mieko is unique. Everyday she impresses us with her perseverence and spirit.

But we're all human. We get weighed down with the phone calls, e-mails, appointments, work, meetings. All those things that seem so urgent. During the holidays, we may slow down for a few hours and enjoy our time together. This Thanksgiving, I'm going to remember all of the families who don't have time. Their time with their children has passed. Every special day is marked with an ache for the one who's not there. It is a parent's worst fear and one that hangs over my head.

People sometimes tell me they're inspired by Mieko and all she's accomplished. I'm inspired by those families who've lost their children and still press on. Like authors Amy Kuebelbeck and Deborah Davis. They are currrently compiling the stories of families and how they made the most of time on earth with their children. It's called Gift of Time (see link below). Just seeing that they can go on and teach others, gives me hope. Thanks.