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.

today my heart walks


For the first time since Daniel was born I am not walking for the March of Dimes’ March for Babies with Team Daniel. It feels strange that there is not Team Daniel walking this year. Still I know that a little bit of Daniel is there, at least his image and his story is at the walk in Modesto. Along with my co-workers and former patients and their families walking today in Modesto, my heart is with so many other walkers all over the country who are walking in memory of Maddie, especially her parents. Here is their story shared this morning at LA’s March for Babies. Video by way of Rachel.

mindfully sad


News circulating tonight in the mom-blogsphere and twitter-land is sad. Beautiful, miraculous Maddie Spohr passed away suddenly today. Following her family’s account over at The Spohrs Are Multiplying I couldn’t help but be enchanted with her amazing eyes (second only to my grand daughter, Hazel’s) and her delightful smile. I identified completely with the trials, tribulations and amazing blessings of life with their preemie because we are living out own life with an amazing preemie. Tonight my heart is sad, so very sad for her family. Please stop by their blog and discover Maddie, if you haven’t already and definitely find it in your heart to make a donation in her memory to the March of Dimes. Not a day goes by where most families of preemies like Maddie and Daniel are reminded just how miraculous they are and how they still are so vulnerable even long after they leave the NICU to “live happily ever after”. Perhaps someday happily ever after will be a reality for micro-preemies and preemies like these rather than a wish, a prayer or a miracle.