one of many beneficiaries


A dear friend passed away suddenly this weekend and upon hearing the news today I was taken way back.

“David and I would like to invite Zoë to the circus…”

“…to the movies.”

“…ice skating.”

“…to go to Santa Cruz.”

“…to the zoo.”

“…a picnic.”

“…a soccer game.”

and on and on.

Barbara was dear, kind woman, a single mom of a boy named David, who happened to be the same age as my Zoë. David was a boisterous kid, a kid with a lot of quirks but a good kid with an amazing mom. Barbara recognized that Zoë and David had a special connection and with that connection David was a little less quirky and a lot more calm and so every other Sunday or so Barbara would reach out to me to arrange a playdate for our kids. Zoë and David together had many amazing adventures and Barbara and I became friends. Actually Barbara was more of a mentor to me. Always a teacher at heart, she came alongside of me and offered calm, quiet wisdom and encouragement without judgment. She always thanked me for sharing my daughter with her and her son but I couldn’t help but think that it was me who should be thanking her. Many of the adventures she would make happen for her son and my daughter were opportunities that I just could not make happen for my little girl at that time. But more importantly I had to thank her for being the kind of friend that she was then and that she was through the years to me…to Zoë.

For me, she was a fountain of encouragement, advice, support and love always offered with no judgment and a lot of humor. She was one of the first people to reach out to Bill and me with congratulations when we made public our decision to adopt our son. She was there when the adoption was finalized, one of the few. Before there was ever a TeamDaniel she was already one of his biggest cheerleaders. As the mother of a child with special needs and as a teacher, she was always willing to offer her expertise and experience as we began to learn the mass confusion that is Special Education and IEPs.

As our children grew up and, as childhood friends sometimes do, grew apart with different interests and aspirations, she remained in touch with Zoë. Over the years, since Zoë went away to college and other adventures Barbara continued to keep in touch keeping up with what was going on in my daughter’s life. Barbara genuinely cared for my little girl as she fell in love with her years ago and she kept up with her through social media always asking questions, sometimes offering bits of wisdom and never expressing judgment or disappointment.

Time and distance has offered little opportunity for Barbara and I to visit face to face save for the occasional wedding or funeral but we too kept up through Facebook and through this blog. She remained always a friend, a mentor, a person I knew I could rely on for advice, support and encouragement. Our world views, our politics and even our faith may have differed as we have grown older but I knew she was the kind of friend who loved and respected me enough to agree to disagree and still remain a dear, true friend…the kind of friend who would literally drop everything and be willing to expose herself to an incredibly infectious, deadly infection like when Jodie and I found ourselves desperately ill in a hospital miles and miles from the Big Top but just down the road from her own home. I begged her not to come but that did not stop her from calling often and praying even more than that for us both.

A very special, treasured friend. Now gone.

Reading the posts on her Facebook timeline, I’m not surprised to see that I am not the only one who has been touched by this woman. So many, so very many have been fortunate beneficiaries of her love, her honesty, her wisdom, her kindness, her friendship. How fortunate we all are! How thankful I am to be just one of many beneficiaries of the love that was Barbara Siler.

Godspeed my dear friend, I can only hope to see you on the other side.

because he can, breaking boards for good


Remember six months ago when Daniel traded in that green, black striped belt for a blue belt? What an amazing day it was as we realized that it was just three years before that he had his very first tae kwon do class and learned how to break a board with his foot. I still marvel over what he has done with tae kwon do discovering his own strength, focus and determination. Whether he has ever realized it or not, these traits have always been a part of who he is ever since he was a one pound baby fighting for his life. The most willful, or feisty of micropreemies are not only the ones who drive their NICU caregivers to crazy exhaustion, but are the ones who survive AND thrive. I’ll let you in on a little secret; they are also NICU caregivers’ most favorite patients. Yes, watching Daniel practice tae kwon do I am reminded of the fact that he is part of a small community of the strongest humans on the planet. How lucky he is to put on that uniform and tie that blue belt around his waist.

With that thought in mind, Daniel and members of his martial arts studio have signed on to Martial Arts for St. Jude to break as many boards as possible next Saturday all to benefit the incredible work done at St. Jude Children’s Research Hospital. How could an amazing kid like Daniel not want to help out amazing, strong and brave kids just like himself?

Exactly.

Oh, and he gets to break boards. It’s always fun to yell real loud as you kick a board with your bare foot and break it.

Seriously.

Daniel’s goal is to raise $251, one dollar more than what he must raise to receive a silver medal. Why not go for the $500 to get the gold medal, I wonder. Well, he likes the silver.

Okay then.

If you can, won’t you help Daniel reach his goal? Your tax-deductible donation helps to ensure that families who seek treatment for their children at St. Jude Children’s Research Hospital never pay for anything as well as help fund lifesaving research that benefit not only patients at St. Jude’s but also pediatric cancer patients everywhere.

As fans of Daniel you all have always been so generous whether it be for the March of Dimes through TeamDaniel or just to help a kid out with his jog-a-thon so his special ed class can win the school ice cream party. That’s one of the many reasons why we love you all…because you care, you really care for this amazing little man of ours. So if you can…no amount ever too small…help Daniel reach his $251 fundraising goal…for the patients of St. Jude Children’s Research Hospital…for the silver medal Daniel wants to earn…for all the boards he is planning to break..

Thank you!

hell hath no fury


Late Friday afternoon we were informed via form letter that our son will be forced to start school at a different school than the one he attended this past year…which was a different school from the one he attended in the 2010-2011 school year…which was different from the one he attended in the 2009-2010 school year. For those keeping score that means that Daniel will have attended four different schools in four consecutive school years and yet he remains within the boundaries of his neighborhood school, the school he attended in 2009 and the school three of his sisters attended.

So fantastically, fucking awesome, isn’t it?

I warned people last Friday F-bombs would be dropping.

Our family is so frustrated.

At his last IEP we discussed at length concerns his teachers and our family has had about his socialization skills and the fact he has no friends.

Can you imagine how heart-breaking it is to know that your child has no friends…doesn’t have a best friend? No one to have sleep overs with, to share birthday party invites with, to plan play dates with?

Can you imagine how HARD it is for a child to make and keep friends when they are shuffled every year to a different school?

As a child, from kindergarten through fifth grade I attended eight different schools…EIGHT. No, I was not a military brat. My family just moved a lot for reasons I never clearly understood. I was too busy trying to make a friend to play with on the school playground. A friend who could offer a little bit of respite from my adult responsibilities of caring for my younger siblings and mentally ill mother. And usually right around the time when I would have a friend whom I could play with at school and around my neighborhood, we would move away to another community, another school district, another school.

I can imagine how hard it is for Daniel at the start of every school year. Standing there on the playground, holding tightly onto his mom’s hand that first day of school, he sees boys and girls running all over the place sharing stories of their summertime adventures they enjoyed with their friends and family. They are rushing to hug teachers from the previous school year or the yard duty mom or the cafeteria lady. The principal is walking around the campus waving, calling out to his or her students asking how their summer vacation was and the kids rush up to hug him or her. That first day back to school can be so stressful for students as they anticipate what the new teacher will be like and what the next grade will be like. Thank goodness there is so much familiarity for the boys and girls to have at their school. It is an environment where they can feel safe and comfortable as they begin a new adventure in a new classroom with a new teacher in a new grade. For six years of my elementary school experience I did not have this; and now my child, Daniel, doesn’t get to experience any of this…not since first grade.

It sucks. It absolutely, positively sucks.

Yeah, I’m crying.

Everyone at the IEP meeting a couple of months ago agreed that he deserved and should have stability in having a home school…even if it was not our neighborhood school. They all concurred that socialization and making friends was an important part of his education experience. And so the school district’s office of special education, in their infinite wisdom, grace and mercy declared from on high that Daniel would be starting the 2012-2013 school year at a new school across town. Requests and agreements made during IEP meetings be damned.

To the school district officials who made this decision all I can say is, “Dudes, you have no clue what you have unleashed.

Hell.

Hath.

No.

Fury…

Fortunately, Team Daniel is a big team, is a strong team, is a team including people who are savvy in special education law and writing and implementing IEPs. They are people who have come along side not judging us but supporting us, encouraging us, reassuring us that we didn’t fuck up trusting that our concerns would be considered and addressed. We have demanded another IEP meeting for as soon as possible and have an advocate in place who will be attending this meeting with us…a very tenacious advocate who can and will fight for Daniel.

I have no clue what the outcome will eventually be. I do know a fury has been unleashed and we are prepared to fight for our son to have that which virtually every other child in his school district is afforded: a school environment where he can feel comfortable and safe so that he can indeed realize the wish the director of the school district’s special education department has for students like Daniel to have a “happy and successful school year”.

But ultimately all I want is someone my son can call his friend…his best friend…something that I always wanted as a child.

walking


Tomorrow I’m walking to honor all of my babies.

The healthy, full-term babies, like my Hazel Faye.

The tiniest of tiny babies born on the cusp of viability, like my Daniel Quinn.

The expectant mamas who deserve access to affordable prenatal care and healthy, uncomplicated pregnancies, like my Holly Austa.

And babies just beginning, like the Coming Attraction 2

Tomorrow I will be walking with my own miracle and former March of Dimes Ambassador, Daniel. It’s not too late to support our walk.

reflecting in gratitude


I’m sorting through my notes from the recent Perinatal conference that I attended last week so I can attempt to report with a little more eloquence to my co-workers than, “It was great!”. I always leave these events inspired, excited, a little scared shit-less (because the legal presentation always does that to me) and grateful.

Grateful?

Yes, grateful. I’m not just a NICU nurse at these events as they share the latest and greatest data on the care and outcomes from the latest and greatest care. I am also the mom of one the outcomes. A very grateful mom.

One presentation has shown over the last 20+ years dramatic improvements in mortality rates of VLBW (very low birthweight) babies who weigh 1000 grams or more…that’s more than 2 pounds for those like me who sometimes struggle converting weights and measurements. And with the decrease in mortality has followed the significant increase in overall positive outcomes for these babies. Another interesting point was recent studies of 20-something VLBW NICU grads and their eventual outcomes as young adults today is basically interesting historical statistics. They really don’t have much significance to the eventual outcomes of VLBW infants born in the last ten years because the mortality and morbidity rates were grossly higher back when these kids were born.

Yeah, NICU team and families!

Perhaps the reality is indeed that the NICU is not tragic and futile with a guarantee of lifelong, expensive, tragic consequences.

But then again…mortality and morbidity (disability) rates for the ELBW infants (extremely low birthweight), those born between 23-25 weeks on the cusp of viability, barely tipping the scales above 1 pound, has plateaued over the last 20 years. We do amazing things, sometimes almost miraculous things and sometimes we just get lucky

Pausing for a moment to reflect on that little tidbit of data and thinking of tragic sadness that was part of my weekend at work I can’t help but look at this extraordinary former 24 weeker of mine with the most amazing, awesome, epic hair (that he did just comb) and be grateful, truly grateful.

It is with that sense of gratitude that I am marching or walking or perhaps I will be running the 3+ miles with my NICU team in honor of my son’s extraordinary life as well as the many, many lives of the babies I have been privileged to care for over the last 21 years.

You are invited to celebrate Daniel and others too.

Join me.

Sponsor me.