From Frog Sized Preemie to Advancement Ceremony Speaker

Twelve years ago this summer, I was six months pregnant with my first child. After a military aviation career, completing master degree, accepting a global tech marketing position and moving back to the SF Bay area where we first met, my hubby and I decided that after nine years of marriage and global travel, it was time to “see what happens.”

What happened was “premature rupture of the membranes (PROM),” a nice medical term for baby’s protective water sac breaking for no apparent reason, at 21 weeks gestation. Worse, as a first-time mommy wannabe, I didn’t even know it happened.

What followed at my next check up was a series of exams and finally the news: we should begin to prepare for the “high degree of probability that your baby will roll onto its umbilical cord, cut off its oxygen supply and die.” We were told to prepare for the worst. We returned home, cried, called our parents to tell them the sad news and waited for our baby to die inside me.

But then I called one of my best friends from my college days at Berkeley, medical doctor Arnaldo Moreno. He said these words, “Just because the doctor tells you the most likely prognosis does not mean that is what is going to happen.”

Speaking these words of logic, to me with a logical brain, gave me the first hope that maybe the worst could be avoided, somehow. I called my doctor and said, “So what if the baby doesn’t die in the next few days? What if it lives to 24 weeks (the point of fetal viability)? What if I somehow manage to stay pregnant for three and a half more weeks?”

I was told that it was 80% likely I would go into labor within the week of the water breaking and lose the extremely tiny baby. If I could somehow miraculously stay pregnant until the first day of week 24, the medical team would have to admit me to the hospital and attempt to resuscitate the baby when he/she was born. So that’s what I decided I would do, stay pregnant, not mourn.

My mother flew to be at my side. We invited the Catholic priest from our church to our home to pray together for my baby’s life. At one minute past midnight on September 11, 2001, my hubby and I arrived at the hospital and I declared I was there to be admitted so they could save my baby. Six hours later I watched our nation suffer terrorist attacks from my hospital bed, taking steroid shots to accelerate the baby’s lung development and pondered how life suddenly became so strange and difficult. I also thanked God that I didn’t already have a child at home, asking questions about the horrors on the TV. And I waited and prayed to stay pregnant another hour, another day, another week, until the now obvious fibroids inside my uterus tricked my body into thinking I was 40 weeks pregnant and ready for labor, when I was really only 25 ½ weeks along with this already tenacious child.

where's the 10 inch baby?

where’s the 10 inch baby?

She was born on a hot September night by near emergency C-section weighing 505 grams (5 grams over minimum resuscitation weight I was told), a whopping one pound two ounces. I describe that weight as a box of butter and a paper clip. I saw the red, frog-sized creature in the incubator for a few seconds through my anesthesia-induced haze, just before they whisked her away by ambulance to another hospital in other city. She went to a hospital in Berkeley (how apropos for being the first child of two Cal Berkeley alums).

Her 137 – day stay in the Neonatal Intensive Care Unit is chronicled here, the website and guest book we created as our techie parents coping mechanism. We used it to chronicle what happened each difficult week, each surgery, each milestone, each piece of sad news; we used it to update our friends and family who wanted updates from two parents too emotionally and physically exhausted to provide them any other way.

But that’s not why I write today. Today, I look back on all that hell, the fifty pounds of stress I gained during that time, the nights she almost died, the Learjet medevac flight to Michigan for eye surgeries in the dead of winter, the insurance company battles [“Your daughter has used up her lifetime maximum benefits of one million dollars already,” and my response “But she’s not even home from the hospital yet!”]

I look back on all of those trials we survived today and cry. Why? Because one week, my little girl Milagro, with her sense of sight lost to detached retinas caused by her prematurity and her sense of hearing compromised too, this little fighter last week stood up in front of her elementary school as one of three children selected to speak at her 5th grade advancement ceremony.

Her speech that she wrote in Braille followed her two peers who also recapped their elementary school years.  These are the words my daughter wrote and spoke that brought our community to tears:

Milagro speaking Vannoy is a Rose by Debbie D

photo by Debbie Smith-Dommaschk

 Title: Vannoy is a Rose

 “To me a rose means something is wonderful.

Vannoy is a rose because I get to eat cream of wheat for a snack. I get to play the piano when I finish my work.

 Teacher Debbie is a rose because she lets me pick out tasty oranges when we go to the grocery store on our community outings. She also taught me how to tie my shoes.

 Writing and reading on my Braille Note is a rose. My Braille Note is a tool for people who cannot see.

 Mr. Steve is a fabulous rose because he plays the guitar.

There were many roses in Room 9. I remember playing the numbers game with Mr. Matt and Miss Rolene. I also had so much fun playing the Cougarcat piano and singing the “Good Morning Song” with Teacher Steve.

 A recess rose is the game-time swing. Buddy reading with my friends was a rose every day.  I loved the Cougarthon because I got to eat cotton candy. The water tent with the misters was fabulous.

 Singing I’ve Got an Autumnish Feeling at the Talent Show was a dozen roses.

 There are so many people at Vannoy who are roses. Miss Tara helped me practice my choir songs.

Miss Lori taught me how to use my cane.

Both Miss Lauras taught me how to Braille.

Miss Jody taught me how to speak clearly.

Miss Kym has helped me be independent. She also taught me how to hula hoop!

Now I hope you see why Vannoy is a rose.”

Like many momtrepreneurs can relate, my life moves alarmingly fast these days. My hubby and I went on to have two more children in the four years that followed this near tragedy. I’m running a publishing and marketing business, traveling as a speaker and launching a children’s book next month, in addition of course to enjoying summertime fun with my three kids. So today I forced myself to stop…just stop. I forced myself to reflect as I didn’t have time to do last week when my first-born child gave her speech, her sister wrapped up third grade and little brother graduated from Kindergarten…too much of a blur.

Today I’m stopping and processing the wonder of what we experienced that day as my first child completed elementary school. I’m feeling tremendously grateful once again for my daughter’s life that was nearly lost 12 years ago in that scary first pregnancy. I’m grateful that we survived those five surgeries before she came home, the oxygen bottles, the apnea monitor, the medications, the daily stress, all of it.

Milagro and members of her educational team

Milagro and members of her educational team

Today I’m grateful for what she teaches people who meet her about what’s possible when love triumphs and when a mother and father forcefully advocate for their child’s educational rights. I’m grateful for the many devoted teachers, speech therapists, mobility instructors, Braille teachers, adaptive PE teachers, audiologists, program managers who have come together all these years to provide a piece of expertise to educate a child that several people early on declared would not be teachable.

I thank her for proving those naysayers wrong.

Today I pause and honor the miracle in my life, the miracle of my little girl, my Milagro. I am truly, truly blessed to have her in my life and share this brief recap of her story with you today. Let her remind us of the possibilities that exist for all of us, if only we truly understand (as Hillary Clinton famously informed us), that it really does take a village.

DSC05016 walking to room 779

Attending the National Federation of the Blind Convention

Milagro on trombone at school talent show

Milagro on trombone at school talent show



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Reflecting on the Birth of My Micropreemie on Her 10th Birthday

Ten years ago today, a severely premature baby entered my life. Weighing in at barely one pound two ounces, my first born child much more resembled a frog than a human. See the picture here for yourself. “Where’s the baby?” asked my mother when she first looked into the incubator of medical equipment….

where's the 10 inch baby?

This morning, after an extra-long good morning birthday hug with Milagro and the usual get-to-school-on-time routine with her younger sister, I decided to take a few minutes and reflect. I re-read portions of the online journal we kept during her agonizing 137 days of NICU (Neonatal Intensive Care Unit) hospitalization. I reviewed the many, many entries in her guestbook from around the globe.

A true understanding of the gift of a child who doesn’t see, whose hearing is also compromised, will evade most who are parents and just about all who are not…unless you’ve met our daughter. If you’ve met Milagro, then you know the happy, chatty, silly, intelligent, literate, curious, strong, joyous, scientific person she has become, little by little, day after day for 3650 days of her miraculous life.

I could write an entire book about the adventures, knowledge, richness and loving souls her birth and unique needs have brought into our lives as her parents. Maybe one day I will. But today I’m grateful to the NICU doctors, nurses, surgeons, retinal specialists, early intervention specialists, special education advocates, administrators, teachers, speech therapists, pediatric pulmonologists, ophthalmologists, audiologists and other “ists” that all entered our lives when Milagro needed them. And I will never stop remembering that had she been born elsewhere with this laundry list of severe medical needs, this story might never have happened and likely would have ended with a quiet little funeral.

Instead, Milagro’s story has been shared (and is still being shared) with parents and professionals around the world through the “Letting Your Child’s Wild Side Out” DVD that we created. My husband and I felt compelled to create this because positive images of children who are blind were not readily available to us during her infancy. When we desperately needed to see examples of how a baby develops without sight, when we needed to see happy blind children to give us hope for our daughter’s future, these images evaded us.

So, perhaps as a coping mechanism as she turned five, we decided to share our struggles, learning, family photos/video and triumphs with others to give hope and specific ideas to parents in our situation. We’ve shipped it to over 100 individuals and agencies on four continents. Although we rarely hear from anyone who purchases it, when we do get the rare email from a parent whose imagination and hope was sparked by watching Milagro’s story, it’s truly priceless.

Through it all, from Milagro’s point of view, life has simply been full of love, laughter, Braille books, writing in Braille, trombones, dancing, school days, marching bands, horses, marshmallows, fishing, camping and most recently, family camps with other blind campers and rollercoasters. She has developed tremendous confidence and self esteem, expressed as “I am a great student!” or “I am a great writer!” or my favorite “I am a great math girl!”  That she punctuates most of her sentences with exclamation points instead of periods also speaks to her exuberance with all things.

ropes course 30 feet off the ground at Camp Bloomfield

imitating art with her cane at National Federation of the Blind Convention

meeting other children with canes at NFB convention

exploring a Cal Band sousaphone her way

exploring Apache, Carole's horse








God indeed has answered all our prayers from those frightening early days after she arrived 100 days too soon into the world. She survived 25 ½ weeks gestation in the hostile uterine environment in which she found herself. She’s a physically fit, super-strong, healthy girl. She laughs many times a day and loves to make others laugh with her own brand of jokes and word play. And lately, from out of nowhere, she’s begun to say “Mama, you are a wonderful mother!” And “Papa, you are a great Father!”

Yes, indeed God answered all our prayers! Happy 10th Birthday my love! As we say in preschool, “Thank you for being born!”

On stage at school talent show
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Nine Eleven 2001 -Day of Horror and Creation

On 9/11/2001 I was in an east bay hospital trying very hard to keep my first child from escaping my uterus prematurely.

I had checked into the hospital at midnight, because it was the first day of the 24th week of my high-risk pregnancy; there was a very high risk of her coming early. Because miraculously we hadn’t yet lost her despite several scares, I had told my doctor I would be showing up at the hospital at midnight to be admitted on the first day of fetal viability.

After a fitful night of sleep, probably 3 to 4 hours total, I woke up, turned on the television, and that’s when I saw the terrorist attacks on the World Trade Center taking place. Completely in shock still, when the Pentagon was hit, I couldn’t stand it any more. Though it was only 6 something in the morning I had to call my husband. The images I was watching on TV were straight from a Tom Clancy novel and I was completely in shock.

My mother had flown down to California the day before to provide moral support to me during a very difficult and emotional time. At my bedside later that day watching the horrific images, she kept telling me I should turn the TV off because watching this was not good for me. On strict bed rest in the hospital, I had few choices for passing the time. I watched obsessively for hours and hours- nothing else was on TV. Bless my mommy’s heart-she and my hubby bought crocheting supplies later. 9/11 was the day I learned to crochet! Beginning that day, my mother and I made many beautiful baby clothes and blankets that all of my children have enjoyed (and enjoy still by dressing dolls in these same precious items.)

Luckily for all of us and for my daughter, who will celebrate her 10th birthday this month, she was not born that day. She stayed inside her mommy for another 10 days, the 10 days that proved to be the difference between life and death for her.

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A Summer Moment of Overcoming Disability

Overcoming? Is that the right word for what we did this summer?

My daughter who is blind is now nine. Last year she had her first two weeks of swimming lessons, as did her siblings. What a difference competent swimming instruction makes!

This year, we did it again –two weeks straight of lessons which culminated in two lifeguards holding my blind child’s hands and jumping into the deep end, nine feet deep.  By the time they did that, she had learned to hold her breath for nine seconds underwater and had overcome any residual fear of having her entire head submerged. Was I nervous? Not one bit! What’s safer than your daughter in the deep end with two life guards at her side?

Instead, I took a fast sequence of pictures the first time they jumped; made a video the second, just like I did when my seven year-old jumped into the deep end, holding the lifeguard’s floatation tube, (landing next to her instructor) at the end of her class.

I’ve been reflecting on that post I wrote a couple weeks ago and it’s finally hit me: this is the summer when my daughter who doesn’t see is doing the same things in the pool as her siblings…no exceptions. She’s doing back floats, front floating, lots of continues bobbing to practice taking breaths and holding breaths, etc. She can hold her breath underwater and make her way to the edge; actual swimming strokes are an “emerging skill” as they say in school.  Granted, my four year-old son isn’t doing any of these things, but he’s observing and learning the skills to prep him for those adventures the next few summers.

hanging out underwater with Papa

The summer of 2011 will therefore go down in my memory as the summer we overcame my daughter’s disability…in the pool anyway. I’ll take it. I loved it!




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Meeting Congressmen on Tuesday; Cleaning Toilets on Thursday

I’ve had an extraordinary six days flying back and forth (and again back and forth) between California and Washington D.C. A Friday night gala in D.C. where I accepted a very special award, a Tuesday lunch where I was introduced to three congressmen and several VIPs and a Tuesday evening event where I moderated a panel of experts from two cabinet departments, a congressional office and two private enterprises.

The latter was the first event tied to the findings and stories from my upcoming book Latinnovating: Green American Jobs and the Latinos Creating Them. It’s been an amazing week of networking at a whole new level and realizing how many people are ready to help me make this book a huge success.

But then today, my first “relaxing” day home after a week with two red-eye flights in four days, I felt the need to nest inside my home….so I cleaned out the refrigerator and cleaned my toilets.  It was the perfect contrast to the special events of the week, and truly reflective of the complexities of my life. I truly am blessed for the variety of activities I live each day!

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For parents raising children with disabilities – the best story you will read today

Mom, city schools never gave up on student diagnosed with autism

A mother’s advice

“As the mother of a student with special needs, Debbie Larson has been more than a mom. She has been a source of motivation, his advocate and a liaison between her son and school administrators.  She has learned about state and federal laws and built up her advocacy skills to fight for her son Kevin’s right to attend school and obtain a Regents diploma. Larson shared some things that she has learned along the way so that others may benefit from her experience.

“Patience and perseverance have been the biggest keys,” she said. “Believe in your knowledge of your child. If you know in your gut something is right or wrong for your child, stick to your guns.”

More specifically, she suggested for parents to learn about available testing and about their child’s disability. Learn how to become a full and equal team member with the school staff and remember that long after the professionals have moved on to other students, “you will still be the most important part of your child’s life.”

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Cal Alumni and Students: Ever wonder what the inside of the Stanford tree smells like?

This week I happily joined the ranks of published authors, as this Cal anthology came out after months collaborating with 34 other Cal grads and two motivated editors. When I Was There: Life at Berkeley 1960-2010 is now available via Amazon for $12.  It’s a collaboration of 35 UC Berkeley grads and a fundraiser for the Cal Alumni in Arts & Entertainment Club.

My essay begins with “Ever wonder what the inside of the Stanford tree smells like?” It’s titled “Inhaling the Stanford Tree” and yes, it’s based on a true story of the “borrowing” of the tree one spring day…….

Official book blurb at Amazon is: “From the 1960s to the 21st century, this anthology contains personal stories of life as a Cal student: heart-warming, heart wrenching, and humorous. Incoming freshman, students, and alumni get to see Cal as it was and as it is today. Written entirely by Cal alumni authors, part-nostalgic, part-pride, and part wonderment, When I Was There celebrates the many facets of the UC Berkeley experience.”

It’s just in time for Father’s Day too. Enjoy our work and please tell your Cal alumni friends, current students, etc.  We want this creative fundraiser to be a great success for this terrific Alumni Club. Oh yeah, if you do buy the book and enjoy the collection, please be sure to write a review at 🙂

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When they throw an IEP Party and Nobody Comes

For the first time ever, I went to an IEP meeting with a client and the educational team wasn’t there. Details on the communications snafu are being investigated by the big boss, but I thought it useful to write up how we handled it, just in case it happens to you.

The resource room teacher greeted us and started calling administrators, program managers and visiting classrooms. Turns out nobody knew there was a meeting scheduled, except the resource room teacher. As the advocate, my best course of action was to document the event, and then let the big boss at the district office know there’s a series process problem in his organization. I dialed his number, got him on the phone, informed him of the situation (of which he assured me he was already aware) and got his agreement that there would be an IEP meeting scheduled immediately. The urgency for the family to have this meeting and plan for the child’s transition to a new school was also important for me to communicate.

The resource room teacher documented that we were there and what had happened. The client and I requested and received a copy, and the whole thing was over in 25 minutes. That’s about all you can do.

On the bright side, client put in writing her request to have key players from new school attend subsequent meeting. I assured the client that the chances of this happening again were right about zero now because we’ve gotten their attention. These things happen; knowing how to handle them unemotionally and professionally is the key skill to learn.

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Attention Parents: Educators are Not the Experts of the Individual with Disabilities Education Act of 2004. You Must Become the Expert!

Attendees at my “You Gotta Know the Rules if You’re Gonna Play the Game” seminars have heard me say this, but here’s a few examples of what the words in this blog post title really mean.

I’m quoting administrators and educators in San Francisco Bay Area school districts below. These are things that have been said in IEP meetings I attended with client families in the last 2 months. All of these statements are false. They serve as further proof of what you’ve heard me say: your child’s educators and administrators cannot be relied upon to know the contents of IDEA 2004. You must know it and do your part to educate them on the misunderstandings that exist in their minds and throughout the school culture:

– “The school must provide all services during regular school hours.” (stated by a district’s IEP compliance officer)

– “There is nothing in the educational code that requires we build a unique program for every child with a disability. We’d never have the resources to do that.”  (stated by a high-level administrator)

-“We can only write IEP goals that we know we will meet.” (stated by an administrator with nearly 20 years experience)

The way we handled the first and third statements of factual inaccuracy during the meeting was by challenging the person that spoke the words to “please find that language in the federal statute,” then sliding the Wrightslaw Special Education Law book across the table.  Of course they couldn’t find it because it’s not there!

The way we handled the second statement was by reading aloud, for the benefit of the entire IEP team, the definition of special education from the statute. We then asked the administrator if he cared to revise his statement based on this new information and he only replied with “Thank you for reading the definition to the IEP team.”

That’s parent-led advocacy, that’s teamwork, that’s getting the meeting refocused on the unique needs of the child!

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5000 School Psychologists’ Reports Surveyed….the article

Those of you who have attended my seminars have heard me refer to this Wrightslaw article and the subject study of 5000 school psychologists’ reports. This article is a MUST READ for every parent with a child with a disability of any kind, especially if you’ve been made to feel it’s all your fault. If you’ve ever been led to believe that the school, the teachers, the administrators, the principal, the specialists, etc have no need for improvement when it comes to your child’s educational program, then this article is for you. It’s titled “The Blame Game! Are School Problems the Kids’ Fault?” Be warned, many react very emotionally to this article because it’s all happened to them, but the insight that it provides into school culture is quite invaluable.

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