Because We Can

There is a point to this very long post that is going to see very disjointed.

Two days ago I got back from a Battle Silverware lunch and wrote the following post. I wanted to publish it for myself, but at the time the feelings were too raw to share even on this blog, where I usually feel comfortable. So, I saved it for a time when it would feel right to post, if ever. It's not even finished exactly.

Wouldn't you know, it feels totally right to share now.
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Feb. 9, 2010
WHY
Today after a series of small, annoying and not-worth-blogging events, I found myself driving back from Little Bug's school in a blizzard, frustrated, upset, and sobbing.

Then I got stuck behind a train.

As I sat there, with the snow falling all around and the train crawling painfully slow and the tears flowing and the time-off clock from work ticking, I said a word out loud I don't think I have ever consciously voiced before.

Why?

Appa and I have never gone there before. We have the best son in the world, so our only "why" has ever been "why did we get so lucky."

Today, my "why" was not that kind of why.

However, the minute it came out of my mouth, a voice clear as day and firm as can be filled my head with this thought.

Because you could handle it.

Okay, yes. I can handle that answer. Little Bug needed a family who could handle it. And we can. Maybe not always gracefully or totally controlled, but he is getting everything he could possibly need. And I needed every single lesson, ever single character stretch Little Bug gives me. The idea of Little Bug not being my son make me sick to even think about.

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That post reflects a very low moment, but it also reflects a powerful moment that I won't soon forget. I can tell myself until I am blue in the face that "Little Bug was meant to be with us," but sometimes something just hits your heart as truth, and that is what happened to me that day.

Today Appa and I woke up early and nervously took our perfect little bug down to a nationally respected children's hospital to meet with a nationally respected pediatric neurologist who is a specialist in hypotonia. (Little Bug was a perfect angel who charmed the nurse, fellow, the Korean-born intern, and the actual neurologist with signs, silly smiles, and a riveting discussion about choo choos.) Today Little Bug got some of the best care in the country.

Because we could give it to him.

The BIG "why" question for each of us is one that can only be answered by someone's personal beliefs. It's not a question that really has an answer. But for my family, I truly believe that Appa and I are Little Bug's parents because we could give him what he needed. We live in a big city with excellent medical care and access to world-renown specialists and a plethora of qualified medical people. We have great insurance that allows us to easily access anything we could possibly want or need for him. We have jobs that give us the flexibility to take him to these appointments and to participate in his therapy. We have the means to buy him the therapy tools and toys he needs. We have the mental and physical capabilities to help him with all this therapy in the evening. I'm not bragging; I'm just being realistic and know that geographically or socially, not everyone would be able to provide these things for Little Bug with the same ease we are able. And, although I would have doubted it 2 years ago, Appa and I have the metal needed to parent a child with significant special needs. We advocate when we need to, we push when we need to, we relax when we need to, we hope when we need to (which is always), we accept when we need to, we argue or ignore when we need to, and most of all, we don't let it define our family. (It might seem like I very much have it define our family, but this blog is sort of lopsided as I use it to get out all those thought that don't actually permeate our daily lives.)

Dr. K told us today, in the most respectful, compassionate, and friendly tone that we were doing all we could. Little Bug is most likely never going to have an official diagnosis, and that is not a bad thing. That's actually a best case scenario in many ways.

However, something else she said resonated deep with me today. "I've been humbled enough to realize children are unknowns. All we can do is give them everything they need and wait and see."

Yes. This is true for every child, no matter what their personal struggle might be (and every kid has one, no matter how small). So, while we don't have a "why" for Little Bug's hypotonia, maybe we can help him someday understand that his "why" might be the same as his parents.

Because he can handle it…with perseverance that would shame most adults (including his mama), with a smile that melts even the hardest of doctors or therapists, and with a joy for life that makes the hard moments worth it and the good moments that much better. The real hero in Little Bug's life story is Little Bug. I hope that as Little Bug gets older, he is proud of what he has overcome and proud of what he might still endure. Appa and I certainly are.

Oh and the obvious other answer to my "why" question……it's because we are just so incredibly lucky and blessed. To have Little Bug as a son is the best thing that has ever, ever, ever happened to Appa and I.

Little Bug, when you one day read this, we love you, our undiagnosed, hyptonic, banana and balloon loving, silly smile throwing, raggie toting, carrot hating, crazy climbing, monkey hooting, cuddly little bug. Good job today, just like every day.

My Family Is Going to Kick Your Butt

Tomorrow is a really important and pointless day. After dragging my feet for....oh, 18 months or so, we are finally taking Little Bug in to see a pediatric neurologist. A really, really, REALLY good one.

Little Bug's hypotonia is most likely caused by an undiagnosable genetic brain disorder. It could be caused by something more definable, but he's never really shown any other symptoms to clue our doctors in. So, for a long time, we just didn't bother to take him to a neurologist since everything she could tell us we were already doing. All the things he could be diagnosed with are things that can't be "fixed" with medicine. Therapy is the only way to rise above these diseases and syndromes, and heaven knows my family already kills it when it comes to therapy.

But, over the last 6 months, two things have become apparent to us.

1. Little Bug is going to need therapy for a while, both physical and developmental. (This is okay.)
2. Even if it doesn't change anything we do, Little Bug has a right to know as much about himself as possible.

So, tomorrow we will take our beloved son to a really good, but very blunt pediatric neurologist. I have no idea what to expect, but I have been prepared by numerous people for an experience less touchy feely than the average doctor's visit. I've been prepared to advocate for my son, to get a second opinion, and to ultimately not really give a crap about what the neurologist labels my kid.

Cerebral palsy, undiagnosed genetic disease, mitochondrial disease, central core disease, FG syndrome, the list goes on and on and on. I haven't decided yet whether I want to get a concrete diagnosis or not. I worry about my son having a label placed on his head, to carry around like a burden during his school year as teachers look at his file and say "Ohh, poor Little Bug has ABCD. Let's treat him differently." Once you get a diagnosis, there is no going back...ever.

Then I think, maybe the label won't be a burden. Maybe it would be freeing to be able to say "CP, my family is going to kick your butt." Little Bug already has so many unknowns in his life; I think if we can clear up one of them for him, it would be doing him a service. Little Bug will continue to thrive, of that I have no doubt. I just always get nervous when people who might not believe that as readily as I do come into our lives.

I think I can handle anything she tells us, just so long as she tells it to us in the context of hope and support. There is nothing I hate more than someone who tries to put limits on my kid or feel bad for us. Here's hoping the well respected Dr. K is a little bit impressed by polite baby signs, silly smiles, and unnatural and criminal cuteness.

Patience

Patience.

This word has been my mantra for years. I have it in a beautiful gold necklace in hangul; I breath it to myself as I am counting to 10; I roll it around in my head when my heart gets overly jumpy.

At work when I am evaluated, the same comment comes up over and over. You're so patient. Unfortunately, I sometimes seem to use up all my patience at work, leaving less for my husband and son, the two people who deserve it the most.

Lately I've been losing my patience more and more with Little Bug. I can make excuses for myself and say it's due to lack of sleep (I don't function well when I am sleep deprived), or due to the stress of our crazy silverware training that doesn't seem like a big deal but it actually emotionally killing me a little each day (watching the 16 month olds scoop circles around my 2 year old every afternoon on my lunch break is hard to swallow, especially as I walk away from said hysterical, head banging child), or due to the lingering effects of all of our illnesses (I didn't blog much last week because I was sick AGAIN), or due to the bad weather that is keeping us cooped up in the evenings, or due to the crazy work stress I have right now.

Those are all factors in my life right now, but they are also just excuses. I'm Little Bug's mom, and he deserves to be above all that other stuff.

It's hard. So hard. He's so challenging right now as he fights back more and understands more and more about what he wants and does not want and can (like physically) and cannot have. He's two and he's going through a development phase and he has needs. It's expected that he is going to hit and yell and cry and throw a fit. In the midst of this, we need to be setting boundaries, and that job usually falls to me, as Appa likes to fall into the roll of "good cop," leaving me inevitably to play the roll of "bad cop."

It's not like I scream at him or hit him or throw him around. But do I count to 10 before I say "NO" in my "loud, stern voice?" Not always. This morning Appa brought Little Bug into our bed a half hour early because he was crying and woke up early. Appa had a very late night and needed the sleep, but Little Bug was ready to play and cuddle with his Appa (he doesn't cuddle with me in the mornings very often…something that hurts my feelings tremendously). Appa needed the sleep, so he asked me to hold Little Bug. Of course, Little Bug only wanted Appa.

So I put him back in his crib and let him cry for 20 minutes. In Appa's sleepy haze, he said "I just don't get why is he being punished?"

Sigh. Why? Because his Mama had no patience at 5:30 this morning (and was maybe a little put out by the not wanting to cuddle thing). And that's not cool. So, I got up and we played and had fun, but I've felt guilty all morning.

So, for the next few days, I am going to wear my necklace each day and focus all of my "famous patience" everyone else thinks I have on my son, the one who deserves it the most.

5:30 tomorrow morning, here I come.

Some Days

There are some days when I can't wrap my mind around how much I love my family. As I stood in the shower this morning, feeling ill and not looking forward to starting the day, I heard this loud stomping outside the bathroom door--almost like running.

Then I heard Little Bug laughing, following by Appa laughing.

I have no idea what they were actually doing because I don't think Little Bug had his braces on at that point and could not have been "running" without them, but whatever they were doing at 6:30 am this morning, they were having a ball.

I just really, really, really love those two.

E

Dear Little Bro,

Let me start out by apologizing for your horrible nickname. It is a true testament to your mother's uncreativeness, and I've not liked it since the minute it was first typed. All I can say is that at least I didn't make it Lil Bro...that would have been unforgivable. Unfortunately, it stuck and by the time you read this in some far off Blurb book, you'll have encountered this nickname more times than any of us could count. The good news is your Appa and I have been busy trying to come up with your real name, something we hope is less lame.

Unlike your brother's name, which Appa picked from a list of three names I presented (actually, really only two names and a dummy third to increase my odds) after he refused to talk names with me for months and months and months unless it was my birthday or some other special holiday, your Appa has been more involved in the research of your name.

By research, I mean I give him lists of names and he tells me he hates them all. But hey, at least he is reading the lists, right?

Sure, your Appa has given his suggestions. Unfortunately, we just recently stumbled upon this novel idea of actually naming your kids after family members, but we thought that would be weird to give you a special family name while your big brother got the random (but much loved) name. So, you get a random name, too. Sorry 'bout it. I'm sure we will find another way to give your brother a complex.

In my head, for about 6 months, you were a certain name. Then suddenly one day, that name didn't feel right anymore. Who knows, maybe that was the day you were born and I somehow just knew that you were not going to be a "J." Or, perhaps I just met one too many "J"s. Since then, I've had a shortlist of three names for you. This weekend Appa nixed two of them. I'd been keeping them close, protecting them round after bloody round of name cuts, but I could only hold on so long.

The third name, "W," is a name I'd love to give you, BUT there is another name that Appa has seemed to latch onto (way more that "W"). I'll admit, there is a part of me that loves the fact that your Appa actually has an opinion on a name, and while I don't dislike it, it's not my dream name.

I've been test driving the name for the last few days. I whisper it to your brother and sometimes say it out loud to see how it feels on my tongue. I pair it with different types of Korean names. I write it out on paper. I even changed the filter on my e-mail from "Little Bro's Adoption" to this name. Your Appa thinks I am nuts and your brother is probably a little confused, but I really wanted to give it a fair shake. I'll be honest, I don't think it will ever be my favorite name.

But it is starting to feel like your name.

Only a few more months before we know for sure.

Whisper

I have a family blog I update regularly. It's primarily for our family who live out of state and to journal our lives. Because of that, I sometimes censor what I write there just a touch to keep expectations of those who read it manageable. Sometimes it's hard to explain to people not going through an adoption just how fluid and not concrete legitimate, concrete information is--especially in a blog post. So, we keep things like our number on the wait list vague and covered with caveats.

But I have to get it out.......

"Worst case scenario is 6."

That's the official word I got from my social worker today. If all the families ahead of us are paper ready, then we are number 6 on the waiting list. If they are not...........

Our agency was blown away by 4 referrals this month. They are telling us they anticipate our number coming up in March or April...conservatively. I've been so incredibly good this time around with managing my expectations for referral and travel, and I anticipate some things will not be as smooth as they were with Little Bug's paperwork. I've been telling myself it could be months and months and months away, but today it became more real.

Little Bro is most likely not months and months and months away.

And I just had to write it down somewhere to prove it to myself.

Thoughts from the Other Side

My life has felt completely unhinged for the past 5 days. Little Bug was sick....VERY sick. I was surprised at how desperate our lives had become. Literally, it was like everything we knew and held dear was thrown out the window.

Parenting? Nah. Survival was our game.

Little Bug was spoon fed on our lap. He had liquid poured down his throat like a baby bird. He went to bed in our bed hours past his bedtime. He got a bath at 11 pm (after an unfortunate incident that could have warranted a "Let's Talk About Bodily Fluids" post). He watched Classical Baby on repeat and was introduced to The Wiggles. He has possibly memorized the Dr. Seuss classic, Hop on Pop; I know I have. He got not one, but two balloons. He slept all the time. He didn't even have to look at a fork or spoon. (I'll admit, I liked that one a bit.)

It felt like this surreal world we were living in. Taking days off work and staying home, we all started to feel a bit nuts. With no schedule to latch on to, I felt very adrift. It didn't help that the exhustion from the bad nights was slowly killing us.

Little Bug has only been really sick twice before. Once was only a 24 hour thing and once was more prolonged, but while we were on vacation, so there were other people there and a different vibe. This was like being locked in a germ prison where no one sleeps or eats with any regularity.

I'll be blunt. It was HELL. Hell for us and Hell for Little Bug.

H

E

Double

Hockey

Sticks.

I know I am still lucky that my kid rarely gets sick, and I will be able to commiserate more now with some of my other mama friends who more often deal with illnesses, but it's honestly going to take me a while to dig out from this. Our schedule is falling back into place, although we now have to work hard at night to get Little Bug to stay in his bed, so sleep is still eluding us.

Little Bug is back to being his charming and stubborn self. I've never been so glad to fight a fork fight in my life!