Thursday, September 23, 2010

Interview with Support for Special Needs

Once a month I snicker as I send readers in a tail-chasing circle - from here to Hopeful Parents, from Hopeful Parents back here. Childish fun as I make-believe readers are stuck in a cycle of never-ending links. I know that doesn't actually happen and that you are all way too clever for that, but the thought of cartoon characters in one such rut brings me some small mirth.

And I get to do it another time this month! Please go check out my interview at Support for Special Needs. This week they are highlighting the founder and 4 writers from Hopeful Parents.

Choosing Hope: Terri Hart-Ellis

From there... you can certainly click a link to come back here. Snicker, snicker. Drop a comment either place to tell me how annoying that is.

Monday, September 20, 2010

Another one? Already?

Guess what day tomorrow is...

Here is a hint:


We shall see...

Wednesday, September 15, 2010

Butterfly Effect

If you have come here, you are a butterfly.

Read about your effect here at Hopeful Parents:

Butterfly Effect

Drop a brief comment on HP to recognize one of your own butterflies.

Saturday, September 11, 2010

The Last 20

Through wet streets and a chilly breeze, this morning Michael ran his last double digit training run (20 miles)before the October 3rd Lakefront Marathon. This will be his 4th time as a marathon finisher, his 3rd time running to benefit the Special Friends Foundation. As of right now, he plans to hang up his shoes for the 2011 marathon to reclaim some time to focus on other things.

The Special Friends Foundation is important to our family and the families of so many impacted by Rubinstein-Taybi Syndrome. When we first found out about Addie's diagnosis, Special Friends was right there with information, connections and support. I coordinate an annual reunion in the Midwest for RTS families, which is largely funded by Special Friends. These reunions have been critical to more than 25 participating families for 11 years.

This past summer we also got the chance to meet and learn alongside a larger group of RTS families at the 2010 Conference in Cincinnati. Hundreds of people attending a day and a half's worth of sessions designed to help us support our RTS kids (and their siblings)as they navigate through and pick their path in life. Special Friends played a large role in making this conference possible.

We are grateful for the organization, for the connections we've been able to make as a result. I am also thankful that Michael has devoted himself to using his endurance and strength to give back a bit. At this moment, we are just a few hundred bucks shy of having raised $20,000 for Special Friends over the past 3 years. We feel confident we'll hit the big 20 in these last few weeks before the run.

This would be impossible if it weren't for our friends and family, for the generosity of others, people who know people, people who support people, people with hope. It would not be possible without you.

Thank you, my friends and family. For acting on hope and on faith.

Click here to see Michael's page:
firstgiving - 26forRTS

(Addie offers her congratulations and a hug at home on the night of the 2009 marathon)

Wednesday, September 1, 2010


Sometimes I won the spot under the arm. Some days I was relegated to the other side of one brother or another. Front row seat to Hop on Pop - under that right reading arm. I would hunker down warmly, knowing that this chance would not come again soon for with 9 siblings, my turn didn't come often. We knew all these books by heart already. We could read them ourselves, recite them without glancing at the page even. So it was not the book that held tightly. Her hands were what gripped me.

Unlike most of her children who got their father's stout hands, my mother had long and lean fingers. She kept her fingernails short and neatly filed. Her dry and always room temperature skin taut over straight and limber knuckles and palms. Her pointed index finger made a soothing white noise as it scrolled under each word without pause, without hesitation. It matched her voice precisely - there was something equally singsong about the movement. The books were old, having been read to 7 older siblings before becoming a focus for my younger brothers and I. They smelled old. They smelled like library books, stored primly - though that could not be farther from the truth. These Dr. Seuss/Ted Geisel books were open and bent daily, along with the multi-volume World Book Encyclopedias from the same shelf. My mother's finger and her hand whisking across the page would release the calming scent in brief waves.

My small thumb on hers did not slow the cadence of her voice or reading hand. I explored lightly enough not to disturb. I rolled my thumbprint over the horizontal ripples on her broad nails going up and then side to side, lightly ticking the vertical ridges with my thumbnail. The crescent moons of her nails shone white against the remaining pink that made up the near perfect rectangle.

Those nails, the joints, the linen skin were a sign of strength, capability and resilience to me, though I did not know it then. Those hands fed, clothed and cared for a family of 12, they brushed our hair, tied our shoes, and waved in time to impromptu kitchen tap dance solos just to make us smile. In 1978, 32 years ago on this very day, her hands began to care for a family of 11 - her partner, her love, her husband bowed in finality to pancreatic cancer after a year-long skirmish. I was not cognizant of all this then as I watched my mother's hands at the time. But I know it now as I look at my own hands and how I use them. My nails are short. I do not buff the ridges out nor do I polish them. I can do nothing about the stubbiness of my fingers except imagine them otherwise. I watch my own pointer as I underline the words in Hop on Pop for my daughters. I listen to the rhythm of my reading voice. There are things I have hoped genetics would spare me. There are things that I've inherited from my mother. And there are other things that I have outright taken from her, hoping to call my own. Hands that imbue a child's faith that such hands will be present and strong forever are among such things I have tried to wrestle from her and claim as my own.

Today I spent 4 hours in a waiting room with my mother as she moved in and out, following the protocol for a medical study she is taking part in. She gets monthly shots in the eye to stave off the vision-ravaging impact of Macular Degeneration.

My mother bears no silence, but fills all air with small vignettes from years ago or from this morning: stories about the grocery store her family "dealt at" when she was a child, stories about old friends she and my dad used to spend time with - people not heard from in over 30 years, stories about which recycling bin she needed to take out on Tuesday, about what the person in line in front of her at the bank did, about what she heard on the radio. Even as I understood and reminded myself today that she is asking for me to bear witness, for me to heed her, to give back even a small piece of the regal attention she used to hold when we all depended upon her, I still prayed for patience and guidance. Though patience, resilience and creative witness-bearing techniques are part of my life as a parent in general, but even more so as a parent of a child with a disability, I feel ill equipped to begin the climb to help support my mother while simultaneously bobbing and weaving in time to her slipping, sliding scale of what helps her hold on to her dignity. I can advocate for my child with different abilities. But I will have to learn how to help my siblings care for my mother as her faculties and health begin to take incremental leave from her 79 year old body.

As we had lunch at my dining room table after her appointment today, she told me a story I have known by heart in her words for at least 35 years, she gestured the same gestures that have always accompanied this story. During an adamant point, her index finger - the one that so precisely skimmed under the words in a book - came into focus. The skin was loose at the tip, the nail longer than I remember it, unshaped by a file. Knobs and swelling had taken over the last joint, the crook of which led the eye to take another, unintended direction. Her hands shook almost imperceptibly. I tried to envision that finger moving across the page with the grace and agility I once depended upon.

Time is diligent and devoted to it's enterprise. It will not yield. Even to a mother's hands.