I wanted to share a couple of things that happened recently.  I received this e-mail from Bess Raulerson, mom of Grace and founder of Hope for Trisomy 13 and 18 (www.hopefortrisomy.org). She's in school to become a physician's assistant and was surprised to see Mieko's news story from 2005 listed as a class reference. Here's an excerpt from Bess's e-mail to me:

" When I clicked the Trisomy 18 link I could not believe I saw you! It is a link to your video story when Mieko was still with you. What is so amazing to me about this is that I remember how I talked to you on the phone after Mieko was born, or perhaps before, about heart surgery and you were one of the first mom's I talked to who was successful in getting surgery for her child. Now, here I am in PA school and the example they provide about a child with T18 is none other than one of my all time heroes, Mieko. Since you have never been to medical school, it is hard for me to explain just how horrendous a picture they usually paint about children with chromosomal abnormalities. Often they just talk about T21 and sometimes mention a quick something about T13 or T18 as being incompatible with life. I have given lectures at colleges and conferences and know that the majority of those attending know little if anything. What I was happy to see is that the child they presented as an example was a child who was given a chance and the fact that this was not scandalous, crazy or inhumane (which I can tell you the majority of women in America hear when they ask about treatment for their children, I have two mom's who contacted me just this week who are currently asking just for basic medical care like IV fluids and resuscitation and being refused) but normal, acceptable and beneficial.  I just thought you might like to know that Mieko is still impacting people, even though she is no longer here and the impact she is making has the potential, at least in this particular circumstance to impact the medical care and treatment of our children. Many of the 58 students in my class will go on into peds, OB or family practice and will have at least a frame of reference and a memory of a little adorable girl who had T18 and thanks to the love of her parents and the care of her doctors, had a happy and wonderful life."

Thank you Bess for sharing this. It brings us comfort to know others may be helped by Mieko.

Also, I recently gave a presentation on Trisomy 18 to a class of special education students.  I talked about survivors like Mieko and Mary Valentine, who just turned 21 years old with full Trisomy 18.  Of course, no one had heard of Trisomy 18 before, but now I think they have a better idea of the triumphs and challenges of our kids.  The professor asked me to come back and present again.  We are hopeful Mieko will continue to provide inspiration for families and insight for health care providers and educators. 

As we approach the first anniversary of Mieko's passing,  we are working on getting a tree planted in the park near our house in St. Paul.  We were happy to hear this week that there's one spot available for a fir tree in this tiny park. She used to swing in that park all the time. We were so proud of her when she walked all the way from home to the park with her walker. She had so many happy moments in that little park.  It will bring a smile to our faces to see her tree when we play there with her baby sister.