Chosen.

I recently came across this piece online:

"Did you ever wonder how a child ended up with a specific mother? According to Sufi mysticism, the soul of the child looks down at the world and sees every soul that resides in every woman. When he finds the one that will be able to help him fulfill his life's purpose, he makes his choice. The relationship between the mother and child is no accident."

In the last two years, we've been told by numerous people that Owen "chose" us as parents. This notion, regardless of my belief in a literal translation of it, gives me comfort. His little family loves him so much.

Happy 2nd Birthday, Owen.

Good stuff.

I've been dreading this day for weeks, since the very day I scheduled the appointment, in fact. Owen had his first EEG in 14 months today, at Swedish Medical Center in Seattle. The last one was in May 2008 when we realized, after two LONG series of injections of ACTH into his little legs each morning, for weeks on end, that his infantile spasms had returned for the third time. That last time, last May, we were in the hospital for a day, for a full 24 hour video EEG. I'd say that was the longest 24 hours of my life, but since Owen's birth, I've had a few of those experiences.

He didn't fall asleep during the hour-long monitoring today, so they weren't able to record the half dozen or so spasms we know he still has as he falls asleep. I had to laugh when I heard the reminder message they left on my phone the day before, suggesting we keep him from sleeping at least four hours prior to the EEG so that he would be tired and so they could record the brain activity during the transition to sleep. If I only had that much control over when Owen does and does not sleep. Ha.

I cried this morning. I didn't let anyone see this except the owner of the crepe shop in Kingston. We got in line for the ferry, the boys had just fallen asleep, and I told Kelsey I needed to get some coffee. I walked into the crepe shop and I just couldn't hold back the tears. I was weeping as she handed me my change and I mumbled something about a birth injury and seizures and an EGG today. She said, "It is so hard to be a mother." Yes.

So I got my double Americano and walked and cried and walked and cried until I saw that the ferry was about to dock. I got back into the car and felt both a sense of relief, feeling as though I could make it through the day, and and urgency to grab control of the car and steer us home, away from hospitals and wires and the smell of that sticky stuff they use to ultimately make Owen look like Frankenstein.

The EEG stirs up so many difficult memories of Owen when he was just a few days old, electrodes all over his head, his eyes shut, Kelsey and I wondering if he was ever going to "wake up." The first EEG, when Owen was just a little over 24 hours old, showed very little brain activity. I told the neurologist to give it to me straight. He said is didn't look good - at all. Then Owen had a second EEG a few days later which showed a very small amount of improvement, but still looked bleak. He had a third EEG a few days later. Same thing. The level of anxiety, the magnitude of stress, having to watch the test, wait for the results, see the red marks and adhesive where they attached the leads... it was almost too much. You think you can't go through another one and then you do, because what choice do you have? I was always so eager to wash his hair and get all that horrible, ugly, sticky, smelly, invasive stuff off of my baby. He was, after all, just a baby.

Today's EEG went just fine. In fact, it went great. It revealed no new seizure activity. Owen was a champ, even giving them a few flinches at the waist, a few arches, a little lift of the legs, body movements that have been suspect by some. "Oh, there was a jerk," the tech would say. "Mmmm, he's just trying to get up a bubble," I would say. "He just had his milk and the Ketocal is so hard to digest. It just sits in his stomach and makes gas bubbles." "He just raised his legs," they said. "It's not a seizure. He does that when... Never mind. I just know. I'm his mom." They laughed. Owen's neurologist told us in our meeting with him a couple of hours later that Owen's EEG looked good. No seizures. He said that the movements, flinching, etc that the tech noted were not seizures. "I know," I said.

Happy Early Birthday, Owen. May you be blessed with more of the "good stuff" in your third year of life.

Sharing...

From the NY Times blog, "Motherlode," that I follow:

Clouds on a Child's Future.

Recent photos of the boys.

Hope everyone is enjoying the summer. Ours finally arrived in late May and today, at least in Indianola, we broke a record... 29 days with no rain. Thankfully, for the garden, there are sprinklers.

Reflections of a Rainbow in His Eyes

We recently purchased a colorful, 8 feet in diameter, beach umbrella for Owen. Our yard gets so hot in the summer, we wanted a shady place for him so that he can enjoy the sights, sounds and smells along with us. To make his experience even more enjoyable and beautiful, we wanted something that was bright and eye-catching. He and I have spent a good deal of peaceful afternoons lately under this rainbow umbrella.



Peace is good and finally came to me a few weeks ago. I know it will not be the last time that I take a few steps back (or down) only to once again work my way back up again. The first few weeks after Elliot's arrival were difficult. Not in that we now have two babes at home as Elliot, compared with our experience with Owen, is easy. Not because we weren't happy because, truly, we've not been this happy in almost two years. Not because we were sleep deprived as Elliot has always been a good sleeper and our experience with Owen has trained us - if we get 5-6 hours of sleep, we consider ourselves extremely lucky.

These weeks were difficult because we finally had a normal experience and it has been so easy and so good and so happy and so full of joy and we wondered, "Why couldn't we have had this with Owen?" It is different, seeing other people's babies and understanding that yours is different. But when Elliot came along, it put a very intimate magnifying lens on the experience we had with Owen. No throwing up, no constant fussing, easy to bond with, nursing so naturally. No intensive care units, no tubes, no monitors, no seizures (which had just started when Owen was three months old, Elliot's current age). Elliot now makes eye contact with us, smiles and is giggling, splashing in the tub, clasping his hands together, playing with toys, "talking." Owen smiles, but the rest of these behaviors, we may never get to see.

So we mourned the loss - again. The loss of a normal experience with Owen. The loss of certain functions he will never have. The loss of never hearing him say, "Mommy," or "Daddy," or having him reach for my hand when he needs me so that I can help guide him. It is really hard and it really, really hurts.

But you pick yourself back up, and you are stronger than you were before and once again, your perspective has changed. I am even closer to Owen than I was before Elliot was born - both Kesley and I feel this way. When Owen looks directly at Elliot and smiles, it is beautiful - in the purest sense of the word. When Elliot smiles at Owen, we know that there is now one more person in this world who will really know and love Owen. It is hard to explain the joy this brings us. And now that there are "the two brothers," I cherish my time alone with Owen more than ever.

So in honor of Owen and our peaceful times under the umbrella, I wrote a poem.

Reflections of a Rainbow in His Eyes

Do you see what I see?

I see a boy, who has seen the halls of the neonatal intensive care unit, the walls of children's hospitals, the ceiling of the surgery room...
yet I see a boy who stills knows innocence.

I see a boy who struggles to communicate with sounds and his body and the harder he tries, the harder the language is to master, the signals always reaching a roadblock...
yet I see a boy whose voice is clear and whose language I understand.

I see a boy who stiffens and arches and is tormented by the curve of his spine, the tightness of his hands and the limpness in his neck...
yet I see a boy whose body moves in water with the grace and fluidity of a dancer.

I see a boy who has a hole in his stomach, who recognizes the sound of the food pump and who cries with resistance to being fed...
yet I see a boy who eats up smiles and laughter and music and hugs.

I see a boy who cries because he is confused and frustrated and angry and he hurts...
yet I see a boy who smiles when he feels joy.

I see a boy who sees unlike most of us, in fragments and pieces and in shifting patterns...
yet I see a boy who sees rainbows and I see those reflected in his eyes.

Reaching for the stars

Jaime, I hope you don't mind if I share this also...

To You, My Sisters

by Maureen K. Higgins -

Many of you I have never even met face to face, but
I've searched you out every day. I've looked for you
on the Internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well
worn. You are stronger than you ever wanted to be.
Your words ring experience, experience you culled with
your very heart and soul. You are compassionate beyond
the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority.
A very elite sorority. We are special. Just like any
other sorority, we were chosen to be members. Some of
us were invited to join immediately, some not for
months or even years. Some of us even tried to refuse
membership, but to no avail.

We were initiated in neurologist's offices and NICUs, in obstetrician's offices, in emergency rooms,
and during ultrasounds. We were initiated with somber
telephone calls, consultations, evaluations, blood
tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things
were fine. We were pregnant, or we had just given
birth, or we were nursing our newborn, or we were
playing with our toddler. Yes, one minute everything
was fine. Then, whether it happened in an instant, as
it often does, or over the course of a few weeks or
months, our entire lives changed. Something wasn't
quite right. Then we found ourselves mothers of
children with special needs.

We are united, we sisters, regardless of the diversity
of our children's special needs. Some of our children
undergo chemotherapy. Some need respirators and
ventilators. Some are unable to talk, some are unable
to walk. Some eat through feeding tubes. Some live in
a different world. We do not discriminate against
those mothers whose children's needs are not as
"special" as our child's. We have mutual respect and
empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with
whatever materials we could find. We know "the"
specialists in the field. We know "the" neurologists,
"the" hospitals, "the" wonder drugs, "the" treatments.
We know "the" tests that need to be done, we know
"the" degenerative and progressive diseases and we
hold our breath while our children are tested for
them. Without formal education, we could become board
certified in neurology, endocrinology, and psychology.

We have taken on our insurance companies and school
boards to get what our children need to survive, and
to flourish. We have prevailed upon the State to
include augmentative communication devices in special
education classes and mainstream schools for our
children with cerebral palsy. We have labored to prove
to insurance companies the medical necessity of gait
trainers and other adaptive equipment for our children
with spinal cord defects. We have sued municipalities
to have our children properly classified so they could
receive education and evaluation commensurate with
their diagnosis. We have learned to deal with the rest
of the world, even if that means walking away from it.

We have tolerated scorn in supermarkets during
"tantrums" and gritted our teeth while discipline was
advocated by the person behind us on line. We have
tolerated inane suggestions and home remedies from
well-meaning strangers. We have tolerated mothers of
children without special needs complaining about
chicken pox and ear infections. We have learned that
many of our closest friends can't understand what it's
like to be in our sorority, and don't even want to
try.

We have our own personal copies of Emily Perl
Kingsley's "A Trip To Holland " and Erma Bombeck's "The
Special Mother". We keep them by our bedside and read
and reread them during our toughest hours. We have
coped with holidays. We have found ways to get our
physically handicapped children to the neighbors'
front doors on Halloween, and we have found ways to
help our deaf children form the words, "trick or
treat." We have accepted that our children with
sensory dysfunction will never wear velvet or lace on
Christmas. We have painted a canvas of lights and a
blazing Yule log with our words for our blind
children. We have pureed turkey on Thanksgiving. We
have bought white chocolate bunnies for Easter. And
all the while, we have tried to create a festive
atmosphere for the rest of our family. We've gotten up
every morning since our journey began wondering how
we'd make it through another day, and gone to bed
every evening not sure how we did it.

We've mourned the fact that we never got to relax and
sip red wine in Italy . We've mourned the fact that our
trip to Holland has required much more baggage than we
ever imagined when we first visited the travel agent.
And we've mourned because we left for the airport
without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never
stop believing. Our love for our special children and
our belief in all that they will achieve in life knows
no bounds. We dream of them scoring touchdowns and
extra points and home runs.

We visualize them running sprints and marathons. We
dream of them planting vegetable seeds, riding horses
and chopping down trees. We hear their angelic voices
singing Christmas carols. We see their palettes
smeared with watercolors, and their fingers flying
over ivory keys in a concert hall. We are amazed at
the grace of their pirouettes. We never, never stop
believing in all they will accomplish as they pass
through this world.

But in the meantime, my sisters, the most important
thing we do, is hold tight to their little hands as
together, we special mothers and our special children,
reach for the stars.

The Ceiling (part 1)

Thank you all for the ceiling decorating suggestions!

I have decided to paint the ceiling blue, add some fluffy white clouds and hang origami paper cranes, butterflies and dragonflies, in varying sizes and colors, from it. I think I'll also try to incorporate foil paper on the undersides to make them even more visually appealing. We have a small fan that I'll attach to the shelves in his room to make them fly about.

I'm really jazzed about this and will post photos when it is done.

A recent shot of Owen in his new hat.

New and recent things.

Owen's new Converse.


Six dollars at a consignment store. Now we're looking for some cool sandals for summer and any suggestions for a two year old would be greatly appreciated.

Owen on his recent vacation to L.A. and Manhattan Beach.




The last shot is of Owen in his Phil & Teds Metro backpack. It is totally cool and the best part - he TOTALLY loves it. It is so comfortable to wear him in this as the pack is designed to be lightweight and fully adjustable. It will be brillant for the trails this summer.

The L.A. trip... Owen and Elliot did remarkably well, although the trip was not without its challenges as one might expect traveling with ANY 21 month old and 5 week old (we drove as will probably be the case with most of the trips we take this year). That said, it was smooth enough to give me the confidence to now be able to pack both of them up, by myself, and take them out on adventures. And as a family, we are already planning several trips with them soon - one to see Grandpa Marshall and Nai Nai and stay at the cabin in late June/early July, a bike trip in Southern B.C. and one in Oregon. We realized on the trip down to LA that we've not been stimulating Owen enough the last few months. Sure, he may experience overload sometimes and may get fussy when he's had too much, but watching the big trucks go by the window, with their colorful cabs, listening to Daddy's music all day in the car, meeting new family members, attending parties and dinners and sharing a room with the rest of his family, made him overall more attentive and, most noticibly, helped him sleep so much better at night. So now that it is getting warmer and I am no longer pregnant, our plan is to get both boys out so much more and for Janet (Grandma Chalupa) and I to plan all day outings each Wednesday.

We were gone for two weeks in L.A. and had a wonderful time at Kelsey's Grandma Tutu's 90th birthday celebration (a 3 day weekend full of events) and a lovely, sunny, five day vacation at a beach house on Manhattan Beach. It is good to be back home and although I DO miss the sunshine, I just noticed today that many things I planted in the garden have come up and soon, it will be warm here as well.

Owen's new brother.



He's growing and eating like a champ and now weighs 10 pounds, 10 ounces. He's easy. He sleeps well - most of the time - is cheerful and has started to smile and laugh.

Owen's new ceiling? We are considering a mural or stenciling Owen's ceiling. Since we are not artists per say, but ARE resourceful and can muster up creativity on occasion, we're soliciting any do-it-yourself suggestions. Send us a message with your thoughts. We need to incorporate big images and bold colors so he can easily see the design from his bed.

No new seizure activity. No drama. No surgeries. No new emergency interventions.

Good.