THE TAO OF TULIPS

This cyber-homeplace is where I document the stills and prose of our ordinary days. I started this in August of 2009, 6 months into becoming a parent to a child as ordinary as the next. Although it has taken me a while to realize that.

 The original name of our online homeplace is drawn from a few of the many pieces of literature that have marked our journey into familyhood. I am a book person; if there is a subject to be explained; I look for someone’s words to lead me to understanding. 

 The Parents Tao te Ching; by Bill Martin Jr. wears a permanent place on my nightstand. I came to it by way of one of my favorite family essay writers- the Dalai Mama herself- Catherine Newman. In her wisdom- both online and in her lovely book; she reminds us of the importance of being kind and present with our loved ones in everyday moments- the good, the bad and the ugly. Anyone who can help me to find the grace in burning the dinner –well that is someone I need in my life right now. So we got the Tao te Ching and are working our way through it- returning to it again and again when I need some perspective. I appreciate Catherine’s ability to show us “The Way” to apply such lofty and contemplative goals that Bill writes of being to everyday, ordinary and often messy days with small children.

Although he tackles the translation of The Tao into parenting- Catherine really applies it to everyday living in her writing. When I can find a bit of it in myself and day I find some peace of mind. When I can find some peace of mind- I’m a happier and kinder person. Both books found a permanent home on my nightstand when we settled in our nest. The compassionate, wise and patient ways that Bill explains are my ideals, a way to be present and savor every moment of our time together on this earth. I first read Waiting for Birdy and subsequently The Parents Tao te Ching when I was first pregnant with Zuzu. I have returned to WFB 3 more times since then. Post-partum in the milky nights with Zuzu, early in my pregnancy with The Quail and again post partum in the wee morning hours. I rarely read more then a snippet of anything at any given time and I believe that is why these books have called to me when my brain is being eaten piece by piece by the babies. WFB has made me feel normal, typical and appreciative of the extra-ordinariness of the ordinary moments of those fast and furiously moving days with small children. The Parents Tao te Ching lets me contemplate both the nature of & the nurturing love that goes into our relationships with these small ones and our Happy Little Family as a whole.

Since finding them; they are never far from my grasp. Both have served in times of frustration and tears as a perspective builder and in a rare, quiet contemplative moment as a validation of my inner calm and happiness.

In my early pregnancy with The Quail I felt a special kinship with Catherine and her book as I realized our pregnancies would parallel each other both as a second child develops in the family space and seasonally as we marked the days till her arrival. While I would lay with Zuzu in the evenings in her big girl bed reading her stories and taking lullabies into our dreams, we would talk about the Baby Quail growing in my belly. Zuzu would often place a small blanket on my belly, gently pat and kiss it and wish her baby sister a good night.  We could hear the tiny chirps of a family of wrens building their nest in the nursery window as I coaxed Zuzu into dreamland.

Towards the end of the eighth month of the pregnancy we learned of the possibility of an extra chromosome residing in the tiny places of our eagerly anticipated little bird. It was unclear for the next several weeks ahead whether or not The Quail would be sporting designer genes or not. The soft markers identified in ultrasound suggesting it, had also been shared by her big sister’s prenatal analysis. To this day; those girls are more similar then their genetic make-up might lead you to expect.

A few weeks after her early arrival; actually quite near her original due date; our suspicions were confirmed. The Quail was diagnosed with classic Trisomy 21 or Down syndrome. Until the return of her chromosomal analysis, three separate pediatricians were unable to definitively say whether she carried the diagnosis or not. You have to remember that T21 is a syndrome; children who have this characteristic or trait (as we prefer to refer to it) in their genetic make-up are more like their other family members then they are like each other. Each child is unique and while there is a potpourri of traits that signify the likelihood of the diagnosis, not every child will have every one. The Quail shares as many traits; both strengths and challenges, with her sister as proportionately she differs from her.

When The Quail was born I began my search for understanding of the beauty of the family we had created. While many diagnostic books and studies were suggested, I was drawn to the family stories of everyday life with children who have special needs. Particularly with a diagnosis of Down syndrome within the family. What I found was an overwhelmingly optimistic, joyful, motivated and enthusiastically welcoming community. No longer was a diagnosis of a special need the secret of the family. The more families open up and talk about their lives, the more educated we all can be to advocate for the individual rights of each and every one of our family members. I noted and quickly put aside the diagnostic literature and delved hungrily into the family essays both online and in print.

The essay, Welcome to Holland; by the forerunning advocate, Emily Perl Kingsley took on a new light of hope and significance for me since my initial reading 12 years ago during the family centered training portion of graduate school in social work. There and then I thought I understood what other families were going through since I was both the younger sister of a woman who was in the middle of a transition from institutional to community life and an eager field student in the area of Developmental Disabilies in social work school and a dedicated worker in a progressive midwestern agency that supported adults with developmental disabilities who lived in the community setting of their choice. I honestly thought I got it.

The evening the pediatrician called Lovey and I to confirm The Quail’s diagnosis; I felt my worldview shift- I was no longer the public servant charged with the duty  to help others- I became the recipient- the one the earnest young social work types would be so eager to “help”. I cried, I hugged Lovey to me and sobbed that evening. Not because I didn’t already love this little being with all of my heart, but because this wasn’t what I expected to hear. I worried about the statistic I had just become and the statistics I feared for our family’s future. I spent one night wide awake wondering what I had done; why I hadn’t just been content with our HLF of 3. And then the dawn broke, Zuzu cried to nurse, The Quail asked for milk and life went on. And since that night it has rambled on in a bliss-filled, awe-struck, weave of the fabric of family life.

Welcome to Holland was the one essay that was in the packet of Down syndrome literature the kindly lactation consultant at the hospital gave us upon our departure. When I started my search in the library listing of books related to Down syndrome, the title “Roadmap to Holland” caught my eye in the reference to Emily Perl Kingsley’s essay. The cover photograph showed a smiling mother hugging her dear son. I could relate to that. I shoved the other books off my stand (with the exceptions of Waiting for Birdy, The Parents Tao te Ching and a few toddler discipline and sleep books) and dove in. Jennifer Graf Gronenberg’s recount of the first 2 years of her family’s life in the realm of making it through each day with life with small ones including one who has Ds; took its title from Emily’s essay. Those unfamiliar with the essay should read it and understand that having a diagnosis of special needs in your family is not something to be pitied. It is unusual perhaps; and not what anyone plans on most certainly; but it is a path and a place where beauty and happiness and a slower pace of life is lived and accepted- like the lovely Holland as the analogy is explained. If you haven’t yet read Jennifer’s memoir- do- in fact put down the diagnostic books and start here. You’ll feel first hand what might go on in your own or someone you love’s life. You’ll get a peak into her tender heart. You’ll see that as much as life with T21 might be different, in some ways it really isn’t- in some ways you are just parenting another little person with unique needs- just as you would parent any other small child with unique needs. And she has a most excellent resource listing in the back of the book that takes the time to put some of this new language you are diving into into perspective and layman’s terms. She helps you weed through the literature that is out there and get a handle on what to look for to be able to identify what is current and up to date and what is archaic and not worth your time.

This is us- this is our daily goings on and growings on- come along with and get to know us! And please be sure to introduce yourself so that we can also get to know you.