Talk to Me!

While little A has said a lot of things that could sound like words, I think I finally got an intentional word on video.

Motherhood and Saying Yes

Since little A is taking a lovely 2-hour nap, I have a moment to write an update this Mother's Day. And upload a photo from today:

This mother's day, I have felt so much love for my own mother. I guess having a baby did that to me, made me think of all the love and nurturing my mother gave to me that I am not even conscious of.

If you look at my right wrist in the photo, you'll see a piece of white yarn wrapped around my wrist three times. This is from a Blessingway I attended a week ago in Flagstaff for the baby girls (one who is yet unborn) of two friends of mine. To start the Blessingway, we passed around a spool of yarn, and wrapping it around my wrist, I said, "I am Alisa, daughter of Janice, daughter of Pearl," the yarn connecting me like an umbilical cord to my past generations of mothers as well as to each woman in the room. I'm planning on wearing it awhile longer, and each time Atticus pulls on the yarn and I see it around my wrist, I feel the love of my mother fore bearers and the women who grace my life today. And maybe it's already working. As some of you know, I've been in a four-year war with the gape hyacinths in my backyard, which pop up like proliferate weeds no matter how many times I dig up and throw away the bulbs. But last week, when my mom was over tending A while Kevin went on his camping trip and I came home from work, she said to me, "Oh, my mother loved grape hyacinths." And my grandma was a wonderful gardener. So there's been a little more forgiveness there, and even appreciation for the multitude of purple flowers popping up in my yard.

This makeshift bracelet of yarn also makes me more conscious of the love I have for Atticus and how grateful I am for his life. He fills me up with his laughter, and if there's one word Kevin and I could use to describe him, it is "Busy." He is like a little whirlwind through our house, tearing from room to room, scattering objects and putting everything out of place. Despite our childproofing, there's always something he finds to make mischief: pulling on a cord to a lamp, knocking over the humidifier in the nursery and spilling the water, chewing a button off of the remote control that he somehow got a hold of. To match his burst of developmental curiosity, I've been saying "no" to him a lot recently. But I don't want that to be the only thing he remembers from this age, me telling him "no" and diverting his exploration. So yesterday, when Kevin was still away at Canyonlands on a backpacking trip, we went out in the yard under our pink blossoming crab apple tree, and I said "yes." You want to drink water from the hose? Yes! You want to feel and pick the grass? Yes! You want to splash water around a cup and spill it on your shorts? Yes! You want to smile your adorable toothy grin? Yes!

It reminds me of this poem that was read at the Blessingway for my friends' babies. We all can use a little more Yes in our lives, don't you think?

God Says Yes To Me
by Kaylin Haught

I asked God if it was okay to be melodramatic
and she said yes
I asked her if it was okay to be short
and she said it sure is
I asked her if I could wear nail polish
or not wear nail polish
and she said honey
she calls me that sometimes
she said you can do just exactly
what you want to
Thanks God I said
And is it even okay if I don't paragraph
my letters
Sweetcakes God said
who knows where she picked that up
what I'm telling you is
Yes Yes Yes

It really is best read outloud. The audio for this poem read by Garrison Keillor begins at 3:26.

And here are some photos saying Yes:

His watertower

His slide

His garden

A Lucky Boy

My favorite little guy is now a big 1 year old. It has been a remarkable experience to watch him learn and grow, and I have changed a lot for it.

I know those of you who still read this blog can't fault me for not posting more regularly, or for giving up my more pensive or nature-inspired posts for the mundane posts of a mommy-blog. Between work, business trips, and now many appointments for Atticus, I hardly have the time. I would love to write more about the observations I make when I'm with him, or how motherhood has permanently changed me, but recording all these thoughts and moments seems like a low priority when I have only a few hours every day to be with him. Living life versus recording life: When you're forced to choose between the two, can there be much of a debate? And life beyond work and motherhood? It doesn't really exist anymore. Or rather, it's gone into hibernation.

So instead while you read this, imagine that I say something about how this last year has gone by so fast and yet so slow. How receiving his catastrophic epilepsy diagnosis 4 months ago has altered the path we were on. How I realize that nothing is precious that isn't scarce or easy to lose, and that this diagnosis has made every moment with Atticus tender.

I might mention how difficult it can be to be up with him 3-4 times a night, but how sleep training is hard to do when seizures also come most frequently at night and you can hardly leave him alone, no matter how many weeks since his last seizure. I would also mention how wonderful it is that we have a reason to hope that he will make a full recovery, that he can be a "normal" kid if we work hard and those seizures--the part we can't command--will stay in control, but also realizing the gravity and urgency of his issues and the necessity to take it all seriously.

And then, knowing all this, you might be able to see why my heart almost burst with joy when he signed his first word, water/drink, four times in a row at dinner a couple of weeks ago, just because he's realizing he can talk to us and that we'll understand him. Or the exhilaration last night when he took eight steps in a row, or to have him laugh and squeal at the animal noises when reading Barnyard Dance. We laugh a lot at our house. It's a joyful house, even if it's a vigilant one.

And so Atticus is growing up and showing me who he is. I know I should leave Atticus to be whatever he wants to be, but to me, he feels like a healer. Not necessarily in a scientific sort of way, but in a spiritual sort of way. Who knows. Maybe he's here to teach us and heal us. To show us that nothing can be taken for granted. That every step should be celebrated. That there's so much to do today, there's really no need to spend all this time worrying about tomorrow. If this is his message, I hope I'm getting it.

And at last, this video. No, nothing really cool happens in it. But it has been 1 year since his grandma sang it to him, and he certainly is a lucky, lucky boy!

And a little more...

Atticus is just so fun lately, we can't help but want to record it all. Besides, he loves to watch videos of himself: he laughs, he smiles to see himself laughing in a video clip. You may need to watch in youtube or Google Reader to see Atticus fully in this video:

And this one (my voice was scratchy from a flu thing I had).

I Got a New Way to Walk!

One small step for Baby, one more small step for Baby.

This guy loves to walk!

A Little Renaissance

This last week has been wonderful for Atticus' development (Atticus the name we use on this blog for safety reasons). We've recently had two great visits with his physical therapist from Early Intervention (who for this age also does occupational and early speech therapy for Atticus). She is so positive about Atticus' progress and skills. One of the best things she's done is help me see how subtle Atticus can be when he's gesturing or imitating me, things that I could easily miss because I wasn't looking for the way a baby would do these things. One of our main focuses right now is to get his pre-language skills down: imitation, taking turns, gesturing, etc.

Every day Atticus loves to play in what we call his "office." Next to the couch we have his musical table. If we place some of his other musical toys on the couch, he'll activate them all at the same time and bounce up and down to the music. It really is cute to see.

Even over the last week, Atticus has had an explosion of development. It's amazing how many things he's doing at once, and it's so fun to see him enjoying new things:

1. He's learned to crawl/scoot backwards
2. He's learned to take 2 steps at a time while freestanding/not holding on to anything
3. He's invented 3 new turn-taking games (bouncing, patting, and blinking)
4. He's become much more interactive and talkative, playing peek-a-boo and looking for joint attention activities
5. He's now sleeping an extra hour at night! (Thanks to Stina's suggestion to put him down earlier, and Jenny's suggestion about using an overnight diaper)

He's become much more interested in books. He particularly loves touch-and-feel books, where he will easily find whatever is different on the page. We can spend 10-15 minutes or so reading book after book with him.

Next is a video of an impromptu game of bounces we had during lunch on Sunday. Sorry for all the food mess, but hey, it was lunch. Enjoy!

Souviens-Toi, Mon Enfant

I've entered the new year pensively. The reflection at this time of year surprised me with the pain it brought me. Not because of my failure to live up to my expectations of myself, but just because there is this sheer exhaustion I have that doesn't promise to let up any time soon. While I have much to be grateful for, I can't help but compare the hope I had one year ago to the realities I now face.

Oddly enough, I've noticed Atticus has noticed these few days of sorrow I've had. What a remarkable baby he is, so in tune with the feelings of his parents. I believe this is a talent he's brought with him that signifies how great his essense is inside that little body of his.

Kevin's French hymnbook from his mission has one of the most beautiful lullabies that was pointed out to me on the Exponent blog because of its beautiful reference to our Heavenly Parents. It reminds me of how tender and amazing Atticus is. I bought a beautiful version of this on iTunes that combines it with "Goin' Home" of the same melody and added it to his lullaby playlist.

"Here's a bit of an English translation" from Jonathan Mahoney, the person in this video:

Remember, my child : not long ago,
your divine parents held you in their arms.
Today you are here, marvelously present.
Your gaze still shines with the reflection of heaven.
Talk to me, my child, about that blessed place,
because for you the veil is still thin.

Remember, my child, the forests, the cities.
Can we down here imagine them?
And the night sky, is it rosy or gray?
Is the sun waiting for snow or rain?
Describe to me, my child, the color of the meadows
and the birdsongs of a forgotten world.

Remember, my child: at the dawn of time,
we were friends playing in the wind.
Then one day in joy we chose to accept
the Lords great plan of life.
That night, my child, we promised in love,
and in faith, to be reunited.

Give the Ol' Beard a Tug

With a thumb to suck and a beard to pull, Atticus will sit on any stranger's lap.

Atticus is sitting on the lap of Father Christmas, who formed the ideas we associate with Santa Claus in the U.S. According to Wikipedia, this magical Christmas giant came as a result of merging Norse and Anglo-Saxon paganism with Christianity in the 7th and 8th centuries. Woden was a giant Norse god and grim reaper.

So this guy is like Dickens' ghost of Christmas present AND the ghost of Christmas yet to come.

It's further proof that the idea of Santa can be sort of creepy, even when he's not watching you take a shower.

Happy Holidays

We finally got our Thanksgiving Day pic from the hotel. Happy Holidays!

Seizure Update

I want to thank everyone for your care and concern since Atticus was diagnosed with a seizure disorder. I haven’t done an update because it just feels overwhelming to write definitively about it. There’s still a lot I don’t know, and it’s hard for me to publish something when it seems our knowledge of what we’re dealing with is still taking shape. But, I have a minute, so I’ll keep you in the loop.

He did a 24-hour EEG at the beginning of November that showed he still has a general seizure background but he didn’t have any actual seizure events. That’s great news because usually infantile spasms are so hard to control. The general seizure background is still a concern for learning and development, because it’s hard to concentrate when your brain has all these extra and unwanted electrical sparks firing off randomly.

His infantile spasm (IS) type seizures stopped the week he was diagnosed, which is very rare. He went for 1.5 months without any supposed seizure events. Two weeks ago, he may have had a partial seizure with the onset of an ear infection.

The disappointing thing about that was that I was hoping that seizures might possibly be behind us for good, and now I know that even a small illness can bring one on. However, we are still very lucky in his case for a number of reasons, and we want to focus on those. Next week he begins physical therapy, so we’ll try to get him army crawling and talking more to us. My favorite moments are when I’m almost able to forget that this is even an issue. I count myself very lucky that there are times now when I’m almost able to forget how scary this still could end up being—most IS parents never get to experience those moments of relief. But for the most part, it’s just my job to keep an eye on things and keep hoping for the best. If you want to join me, I won’t be stopping you. I love my friends for their support.

P.S. I hope you all had a great Thanksgiving! Atticus enjoyed being able to eat at the table at the Grand America Hotel with us. And some of the food even ended up in his mouth.

Fall Leaves

If you'd like to see our whole photo shoot, now you can. I just love these pictures D'Arcy took of us. I also wish I had made books of the other photo shoots we've had. Maybe if there's a sale at Shutterfly, I'll go back and make books of those wee first days of Atticus' life.

Click here to view this photo book larger

Giraffy Laughy Halloween!

We went with Atticus' cousins and granparents to Garden After Dark up at Red Butte. They do a nice job up there, and we got spooky photos. OK - not exactly.

Pictures up the Canyon

To see the amazing photo shoot D'Arcy did for our family today, check out her site! Thank you D'Arcy, for being a wonderful photographer. And thank you little Atticus, for being such a cooperative guy.

And Now for Something Completely Different

I've been taking a lot of video over the last few days to record Atticus' behavior. Today I was sorting through them to decide which ones to show the neurologist, and this one just cracks me up. Although it starts out slow, you can see that about half way through he realizes he has mine and Kevin's attention and he starts putting on a show by making funny sounds. I also want to show how sweet, cute, and funny he's been lately. He's our great little guy.

Sorry the video looks off center. It's just a Blogger thing I guess.

Holding on to Hope - Our Journey Begins

October has brought our family an intense time. Little Atticus has seizures. Nasty, tricky, hard-to-diagnose seizures.

I've been walking around with that sensation like the one between sleeping and wakefulness where you try to sort out your dreams from your reality. Sometimes it's such a let down, to realize that your magnificent experience was only a dream. Other times, you remember something awful happened, and you feel an overwhelming sense of relief to realize it was just a nightmare. And then there are the times where as hard as you try to convince yourself it was only a nightmare, you remember that in fact it is your reality, and that sleeping is your only escape from this feeling.

Before I get ahead of myself, I should mention that we have so much to be grateful for. We have every reason to be hopeful that this will all end just fine and Atticus will rebound. Only 1:33,000 babies have this distorder but even Atticus has a rare case within this condition - in all these positive ways. We believe everything will be OK.

After much persistence, we were finally able to get some answers on some spasms Atticus had for 5-6 weeks. At night, he would wake up screaming, and go into a series of little fits where his head would be forced into a nod, chin to chest, and his arms would fly out in front of him. This would repeat every few seconds for minutes. Kevin recorded him doing this here. We had described this to a different pediatrician at our clinic, who thought it was acid reflux, so for the last few weeks of these fits, we'd been trying to squeeze a syringe full of Maalox down his throat. These were awful to witness, and they disrupted Atticus' otherwise perfectly beautiful full-night sleep.

The spasms began decreasing to just once a night, and he even went a couple of days without one, but we decided to have him seen by his own pediatrician to check up on it. We took in the video of Atticus, and after seeing it, our pediatrician said it could be seizures and ordered an EEG, which would take several days to get. He also prescribed Prevacid to ease any reflux that might be related. I was on a business trip when I heard they might be seizures, but I immediately googled infant seizures and found this video matching what Atticus does. Dozens of other videos matched. It was heartbreaking. Kevin and my dad took Atticus into the ER at Primary Children's that night, where he was seen by three doctors and turned away with a diagnosis of Sandifer's Syndrome, a type of acid reflux.

When I researched Sandifer's things were not lining up correctly. Atticus bobs his head down, which is counter-intuitive to reflux. Also, his fits were at night, not right after feedings. Atticus' records show the note from the ER was incorrect and also stated some outright false information that ignored some developmental delays Atticus has. The ER had also given us some bad information about seizures, associating them only with the grand mal type, and ruling out these kind of spasms as being remotely possible to be seizures. They also said seizures don't cause brain damage in infants, which unfortunately is not true. This was a huge cause for concern.

On Friday I received a phone call from Stina's brother-in-law, a neurologist, who told me that infantile spasms (West Syndrome) was very likely, and that an EEG and treatment could not wait. We took Atticus back into the ER and demanded a pediatric neurological consult. We got an EEG that didn't capture any spasms/seizures but showed abnormal discharges that indicated that seizures have or may take place. This was enough to show Atticus had not been having only reflux, but had been having infantile spasm (IS) seizures. We got him on an anti-epileptic drug right away. Then my research on the disorder began, and I found some terrible, heartbreaking statistics about development and mortality that I'm not going to cite here. But they were devastating.

Fortunately, every case is unique. As I said, there is much to be grateful for and hopeful about. Atticus shows some developmental delays (he's showing up 2 months behind on some milestones), but not as bad as I've read about. His EEG doesn't show a certain pattern called hypsarrhythmia usually associated with infantile spasms that can cause a lot of concerns. While I am upset this took 1.5 months to catch, it's earlier than the average time it usually takes parents and doctors to catch. And probably the best result is that his seizures were declining on their own. I've also realized I've got to become an expert on this right away. I now have two full-time jobs, since treatment is such a key to getting the best possible outcome.

We accept all forms of positive energy, prayers, and good vibes. Some kids with IS do fine in the long run. We ask everyone to please hold that picture of our Atticus doing fine, making a full recovery, forging new developmental pathways, and without any seizures, in their minds and hearts. We know this is possible. We pray for this outcome.

Cedar Canyon and Shakespeare

Our annual trip to the Utah Shakespearean Festival and Cedar City was a wonderful break. We saw Much Ado About Nothing, which is a fun well-written comedy (yes, some plays are better written than others), and the Merchant of Venice, with the actor portraying Shylock doing an outstanding job. However, I didn't care as much for how Portia's legal skills were portrayed in the courtroom scene - she was portrayed as finding the answer at the last minute. I much prefer her knowing the loophole all along, but choosing to withhold it to allow Shylock to prove his character. The child care offered by the festival is great, and well worth the price for one baby.

Sitting in my favorite bristlecone pine tree.

Climbing very tall mountains.

August Afternoon

Half a Year, or How Far We've Come

The time between the end of January to the end of July this year has been the fastest six months of my life. I think this perception that time is going by too quickly is based on two main factors: having very little free time and caring for a person who changes much each month. I've also had to train myself to slow down and be more mindful about what I do and say, as I feel I can be distracted like never before. There's probably something in there about the hormonal and chemical changes I've experienced that makes it feel like the pathways in my brain are being re-routed, plus a lack of sleep. Not that Atticus doesn't sleep well - he sleeps wonderfully - just that he's a night owl like his dad, and I always have to get up early.

As I look at this family photo from his first week, I realize that back then I didn't just give birth to Atticus, but I gave birth to myself as a mother. People always said that becoming a parent will change your life, but I think there's no way to predict just how much your life will be turned upside-down until it happens. There is a new tremendous capacity to love that I experience somatically, as if my chest is enlarging to take in everything that my baby is.

Yet with this capacity to love so completely comes a vulnerability to get your heart broken: through loss, through pain my child may experience, through the onset of increasing independence, or through the knowledge that I could never expect a mother's love to be requited in just the same way. That's not the purpose of my love, anyway, since the duty of a parent is to give. But with love comes attachment, and with attachment comes suffering, as any Buddhist could tell you. Or maybe it's through suffering that we develop our large ability to love, and that's how parenthood changes you. You devote all you have to someone else's welfare, and in the process you gain even more love and commitment to that person. Maybe it's both. I can't decide.

As Atticus grows, I'm looking forward to him showing me who he is. These next few months will be important ones where he forms who he's going to be. Even at this age, I can sense that he's an observer. Strangers most often comment on his eyes, which aside from being beautifully gigantic and blue, have always been great at focusing and holding a gaze for quite some time. He watches his world before diving in. He's careful about forming an opinion, but once he's decided something, or someone, is good, he dives into the experience with his whole being. Huge greetings and smiles make my day.

All in all, we're enjoying our situation. On a break from school, Kevin is at home doing job searches and amazes me with his responsiveness, patience, and gentleness in caring for Atticus. I am appreciating work and my good projects. For awhile, I ran myself nearly ragged by spending every minute outside of work caring for Atticus, which meant I got no time to decompress and care for myself. I would like to let go of this working mom guilt, but nearly everywhere I turn, there are a lot of mixed messages in our society about the expectation of parents. So I'm discovering that motherhood is a huge exercise in trust. Trusting yourself, trusting your partner, trusting your child, and trusting the process. They say the first year of a baby's life is about learning to trust that the world is a safe place, that we'll be taken care of. I venture that it's not only the baby who is learning this.

This is my song, O God of all the nations,
A song of peace for lands afar and mine.
This is my home, the country where my heart is;
Here are my hopes, my dreams, my holy shrine;
But other hearts in other lands are beating
With hopes and dreams as true and high as mine.


My country's skies are bluer than the ocean,
And sunlight beams on clover-leaf and pine.
But other lands have sunlight too and clover,
And skies are everywhere as blue as mine.
Oh, hear my song, O God of all the nations,
A song of peace for their land and for mine.


- Lloyd Stone

Happy Independence Day!