All the various fortunes

Today was the day! Cora graduated from the cardiac ICU and was moved to the step-down unit. She had another solid couple of days and as of this morning was completely off her drips, which meant she was cleared to move on.

She is in an isolation room because she is still positive for the respiratory virus. The nice part about that is she doesn't have to share a room with anyone. But obviously we are hoping she can clear the virus soon. Now that she's in the step-down unit the primary goal will be to get her into the best possible position to go home. That will involve tweaking medication dosages, settling on the right feeding regimen (right now she is still on continuous feeds through her NJ tube), seeing if we can potentially wean down her oxygen requirement, continuing to tweak her pacemaker settings, and monitoring her heart function, which became somewhat marginal following her surgery.

I have no idea how long we will be there but my guess is, not long.

I woke up feeling like I might be getting sick so I skipped the hospital today and Jay hung with Cora instead. The kids spent some time with their beloved Auntie Marie and Grammie and Papa, as they do every Friday. It almost felt like a normal day, picking them up, then running errands, and hanging in San Rafael which I so rarely do. I even got a car wash. Impressive.

We stopped at an art store to get some supplies and I noticed it was the annual Art Walk that takes place every year in our town. Last year the four of us walked downtown to see one of our friends who was showing an amazing exhibit at a downtown gallery. Her installation piece, called Fortune, consisted of thousands of red and white paper fortune tellers spilling out from the corner of a room. Each person that visited the exhibit was asked to take a fortune, either red or white. It was a tribute to autism and symbolized the random chance by which some children are struck with the disease.

But it could also be carried out to include the random draw by which any child is handed any medical or developmental challenge, big or small. The reality is that most of the fortune tellers represent safety and health. Most of us draw those ones and we barely realize the others exist. How ironic that last year at the show, I drew a "normal" red one and tucked it safely in my purse. Safe from disaster! Or so I thought.

But someone always has to draw the white fortune. That's just the way life is. The exhibit wouldn't be nearly as beautiful if all the tellers told the same happy fortune, and besides there is much to be learned and gained and grateful for, I am seeing every day, from drawing the alternative.

In the art shop tonight, a trio was playing Willie Nelson's beautiful song, Sweet Memories. Maybe it was the memory of my parents blaring that song on road trips in our big brown van, and of my Dad's undying love for Willie and a moment where I missed him. Maybe it was the perfect harmony of those three voices, or maybe it was the moment when I noticed and completely appreciated Dom and Cosie coloring on a sheet of butcher paper on the floor. Maybe it was the text Jay had just sent me with a beautiful picture of our little love, Cora, who has overcome so much and who still faces so many unknowns. Who knows, but I got teary eyed for a minute. Time stopped, and my heart overflowed.

Progress, fun, dress-up, and my wish

Today was fun. There's a description I don't often use.

When I walked in this morning Cora was awake and alert, just staring curiously at her nurse as she administered the morning medications. As soon as she saw me she lit up, and within a few minutes she was literally grinning. A smile wider than I've ever seen her give. It was beyond words.

I tried to capture it on film, but nothing will cause a baby to stop doing something cute more quickly than pulling out a camera. Sure enough by the time I got my phone ready the moment had passed.

The change in Cora over the past week is amazing. She's a different baby entirely. Well, she's her, but for a while there she was completely gone. Now she's back, nearly all the way. And she just warmed my heart today. I held her for a long time and she surrendered to a deep sleep right there with me. I read her blog posts (not mine, that would be weird) and told her stories. Mostly I just looked at her and adored her little bits, just one mom in a long procession of moms who have done the very same thing a thousand times. I love the normal stuff.

She is still making progress weaning down on the drips that are keeping her on the ICU. I'm sure within the next few days we will be officially booted from 7 East. She just looks way too good to be there. In fact today she played with toys, looked in a mirror, had tummy time, wore a shirt and even got dressed up by me and her doting nurses (complete with accessories.) It was ridiculous, as the photos will confirm.

So hard to believe that's the same girl that was getting chest compressions less than two weeks ago. Life is crazy. And it just goes on and on, over itself, astounding you.

I'm starting to daydream about having Cora home. I know it will be challenging and there will be a plethora of medications, feeding through a tube, and still an oxygen concentrator wherever we go. There will also be her very tenuous health and the uncertainty of the path ahead. But I'm starting to make my very long list of things I can't wait to do. There are so, so many.

For some reason the one thing I want to do more than anything is to go for a walk in our neighborhood. Cora has never once been in a stroller or a baby carrier, and she's never seen trees or birds, and she's never felt the sun on her baby skin. I plan to change that on day one of our dismissal. And on that day I hope all our neighbors who are reading this will smile and wave from their porches as Cora goes by, and I will remember that this was the very thing I always wanted.

Eye on the Prize

Cora has made some great strides in the past few days and they are even talking about transitioning her out of the ICU in the next couple of days. She has weaned all the way down to just regular nasal cannula oxygen and off of the hi flow, and they have begun to wean down her drips as well.

Although she's not her old self yet, I can see her coming through a little more each day.

There are still many questions about her heart function, but the reality is that even if it's not great, she could move to the step-down unit so long as she looks good clinically. There are medications to be tweaked and other items to follow up on, but we are definitely, for the first time in a very long time, moving toward the yellow house.

I can tell Cora wants to go home. I most definitely want her to come home. I just know in my heart that she will do so much better than she ever has if she can be with us, around all the crazy chaos of her brother and sister, and seeing the world, one little piece of our neighborhood at a time.

The Benchmarks

Today our Little Lionheart is six months old.

If Cora was a typical baby she might do some of the benchmarked baby tricks like sit up, roll over, push up, or crawl. She would probably be trying solids and holding her own bottle, or at least drinking from a bottle. She might be babbling, playing with toys, and laughing.

We all know, she can't do any of those things. But there is an almanac full of beautiful accomplishments this girl has made that blows the "what to expect" books out of the water.

The first and most astounding thing she has accomplished is that she fundamentally changed my perspective as her mother. All my adult life I have been afraid of having a child with special needs. What would I do if my child was different? What if my child couldn't walk or talk or read or play sports or be just like every other kid out there? What if my child looked different? I truly believed I wouldn't have the strength or the guts to mother a child like that. I don't have any patience, I am too judgmental, I am too afraid of what everyone else is thinking.

Cora's miracle is that she changed my mind. I won't lie -- I was still scared in the early weeks of her life when more and more bad news kept being revealed. But then something extraordinary happened. She worked her way into the inside of me, and she changed me.

I have accepted at the very bottomest bottom of myself that Cora will not meet the typical benchmarks. I know very little about what she will one day accomplish, but I do know that. That's not what's amazing. What's amazing is that I no longer give a crap about the stupid benchmarks.

Every step forward, however baby-step-like it might be, means so much more to me than it would if she were a typical child. Each step is made out of gold. I absolutely celebrate each tiny thing, and thank god for them without secretly asking for more. I am grateful for the days she doesn't need to be on a ventilator, for the times when I can hold her, for the few milliliters she drank from a bottle a couple of weeks ago, for the deep and sincere way she can look me in the eye. When she held her head up a few days before surgery, I could have died right there. Life seemed so completely fulfilling in that moment.

Cora's milestones have been all those things I just mentioned. But more importantly, her accomplishments have been to make people reconsider how precious life is, how ridiculously rich we are to have kids to cuddle, friends to laugh with, and healthy bodies. She has reunited me with friends I haven't spoken to in years. She has made nurses and doctors fall in love with her. She has brought many, many people to prayer. She has beaten the odds twenty times when her body had all but given out, but her spirit still had more to say.

And she can grasp toys, and hold her own hands, and hold mine. And when she's feeling good, she can even hold her head up.

What a wonderfully clever little being she is.

For Cora, big things are possible

Well, we did it.

It wasn't always pretty but our team managed to find a way to finish The Relay for the ninth time, despite ninety-seven degree heat on Saturday, one runner lost due to injury, and the fact that Jay and I had together completed a total of about five training runs leading up to the event.

As usual it was a blast -- a weekend filled with a disproportionate load of laughter considering how much physical pain it inflicts, and how very little sleep it offers. It was really wonderful just to be with our friends for the weekend and leave most of the stress and heartache of our normal life behind.

As we passed the Cora Lion bracelet from runner to runner, I think we all had a chance to reflect, each in our own personal way, on Cora's journey. For me, there were many moments when I felt for whatever reason I didn't have the umph to finish my legs. And during those times I asked Cora to give me a little of that strength she so flawlessly demonstrates everyday. It made me think of how ironic it is that I should be asking for something from her, when of course it should be the opposite. But as you know, she is my angel baby who always gives more than she takes and who quietly shows people so much more grace than we could ever model for her.

At one point in the night I was running in the pitch black, unable to see more than a few feet in front of me by the light of my headlamp. I couldn't help but think about the similarities between that experience and our journey with Cora. Life is so much less scary when you focus on the three feet ahead rather than all the fears about what's coming a hundred yards or a mile ahead. There are always those moments where you think, oh crap! I'm all alone in the dark and I don't know what's coming or how long this will go on! But then you take a breath, remember Cora and get washed with love, you believe you are in fact not alone, and you trust that eventually the road will lead somewhere you recognize or understand. It's amazing what you can do just by putting one foot in front of the other.

It sounds like Cora enjoyed her weekend with Grandma, Aunties and many friends. It felt so good to get texts and photos of Cora with her various admirers. Not much has changed on the medical side, she is still in the ICU, more or less in the same shape as last week. But she got lots of holds and gave lots of little smiles. One of my friends said Cora spent a long time telling her about the day in her sweet little baby voice. She does love attention.

I love that I can share Cora with our family and our community, and that even though she can't seem to leave a hospital room she has already touched people and opened their hearts. I know she touched our team members' hearts, and it felt like being in all those hearts this weekend she was able to experience some beautiful moments out there in the big world.

Shin Splints

There aren't any real changes to report tonight. For the last few days Cora has been very much the same, with the exception that for some reason she didn't sleep at all last night or for more than ten minutes today. She wasn't angry, just a little bit feisty and not restful at all.

This morning I got to hold her for a while and that made her happy. She didn't sleep but she studied me and Grammie and Papa, who were visiting, intently, with those inquisitive eyes. At least it made her content for a while. The rest of the day was filled with her normal meds, and lots of chest treatments and suctioning to clean out the junk in her lungs, mixed in with visits from friends.

All of Cora's medications and support mechanisms have been unchanged the last few days. She is still on a hefty dose of diuretics to dry out her lungs, as well as various heart medications and all manner of other things. And still on the hi flow oxygen; still working pretty hard with her breathing. She is periodically spiking a fever on top of everything so she is also continuing antibiotics. They are especially cautious of infections since Cora has "hardware" in her now.

This weekend Jason and I will step away from the hospital duty and let some of or friends and family sit with Cora. Every year for the past nine years we have participated in a running relay race which spans 200 miles of the Bay Area. We do the relay as part of a team called Shin Splints, which should indicate about how serious we are about the competition. We may not be fierce competition, but what we lack in athleticism we make up for in fun. Ironically, the relay benefits an organ donation non-profit organization. We figured that of all the years we've participated, given everything we're going through, it would only be right to keep the tradition alive. Plus it might be nice for us to get some fresh air.

This year our team will run in honor of Cora, and we will pass that Cora Lion bracelet, the one that Liz wore when she did the Escape From Alcatraz race earlier this year, from runner to runner all the way from Calistoga to Santa Cruz. I'm sure the entire time I'm running I will be dreaming of a day when Cora can see things and do things beyond the walls of a hospital. But I also know we all will be drawing strength and inspiration from her, and the resolved way she keeps on going, no matter how much pain or how difficult the road.

Saran Wrap

Today started off a little better than the days prior. When I arrived this morning, Cora was sleeping peacefully and her breathing looked less labored and her color looked good. I was so optimistic that she finally had her turning day. But as the day wore on, and into tonight, I'm not so sure.

The problem is that whenever she is awake she's so upset and struggling so much that you either have to spend an hour calming her down, or (more usually) the nurses have to give her painkillers or sedatives so she doesn't fall off the cliff.

It's just gnawing at my insides. Something isn't right.

Despite all the medical challenges she's faced, Cora has always maintained her calm demeanor. She's almost always content, if not happy, and that's why, despite current circumstances, I always refer to her as my easy baby. Something is agitating her or causing her pain and I don't know what it is. Of course it could be explained by any one of the things that have happened to her in the past week, but it seems to me like it's something else.

I don't know. I just don't know what to say.

The bright spot of today was getting to hold Cora for an hour or so. During that hour, she slept deep and comfortably, and she just radiated her goodness into me. I fell asleep in the rocking chair with her within about two minutes of getting a hold of her. It felt so good to hold her little body and keep her safe, if only for a short time.

This past week has been hard to walk through. I feel like I'm trapped in saran wrap, trying to find a way out and having difficulty breathing. It's like I can see "normal" life out there, but I just can't reach it. I'm so uncomfortable and I just want to get out of it, but there's no getting out, and nowhere to go.

I remember when Dominic was a baby and the whole motherhood journey was brand new to me. As an infant, he hated the car. Every time we put him in his car seat he would scream. Not just whine, but four alarm bloody murder scream. For the first four months of his life, every car ride was like that, and there was nothing I could possibly do about it. The sound of that shrill screaming and my inability to end it would feel to me like someone was tweezing out little parts of my spinal cord, one by one. It was torture. I would arrive at my destination and feel like shouting at someone, or better, punching someone in the face.

That was my perfectly healthy child whose only issue was that he was incredibly high-maintenance and has always demanded that I stand at full attention.

But that's what I have to remember when I wonder why Cora's pain and discomfort is driving me crazy. I just have to sit there and watch things be done to her, and see her struggling, and listen to her cry, and I have to accept and accept and keep on accepting because, again, I am without any real power whatsoever. I can love her infinity, but I can't figure out what's wrong with her or make it any better. I can't even live in the same city as her. It makes me feel like screaming. And, just for the record, I really think it could feel good to punch someone.