However. There is beauty in all of this. So I will try to scrape some semblance of written sense together to explain where that beauty is tucked around all the horror, settling all of us down.

I’ve found beauty in this child. I just returned from spending 3 days with her. I cupped her tiny head in my hands, fed her a bottle, and sang to her in the wee hours. Her tiny black eyes met mine, he fingers curled around mine, she rooted and snuggled and wrapped herself around my heart for warmth. I’m in love. Utterly and truly in love.

I’ve found beauty in her parents. They know they were chosen to care for this child, they know they are meant to do this and that they can handle it. They know her time is limited and it is their job to make her existence as comfortable and meaningful as possible. And, with their daughter home surrounded by family and bundled from one set of loving arms to another, it is both of these things

I’ve found beauty in the love that keeps knocking on their door and calling their phones and texting and emailing and Facebooking near and far. Love pours in constantly and at every hour. Selfless, unconditional love. People want to know her daughter. They leave food. They take their girls to the aquarium. They sit on their couch and love the new baby. They love them and love them and love them all. This tiny, sweet girl has created more love in 11 days than I have seen in my 38 years of life.

So, I’m left speechless and without my words. Because I can’t make much more sense of this than that. But maybe you can say something for me. Maybe you can leave words of love and support here for her. Could you do that? Could you tell her how amazing she is? Could you bolster her any way that you can? Could you share a favorite poem she should read to her girl? Anything really. I just ask that it is positive, that you celebrate this child’s life and bring love to her world.

In the meantime, if you want to see how another family found beauty and joy during their time with their child also diagnosed with Trisomy 18, please watch this.

Of course, I had flashbacks to 6 months earlier when his lungs sent him to the hospital for 5 days. That wasn’t pneumonia. But it was the flu and it started with just a cough and then a fever, too.

So I stared at him and fed him sips of water and wondered what I should do. Of course, I called the pediatrician 5 minutes before they opened the next morning and kept redialing until someone answered. By lunchtime, we were back from the pediatrician and he had finally settled down with three types of meds (one being antibiotics), a nebulizer and a very effective prescribed combo of lemon, honey and tea. It worked miracles. I knew his respiratory infection could have evolved into something worse, but it hadn’t because we had access to immediate medical care.

We have access.

Yesterday, I sat in on a conference call about World Pneumonia Day. Today is World Pneumonia day, in fact. On the phone were Dr. Richard Besser, ABC News’ senior health and medical editor, as well as Dr. Orin Levine, with the International Vaccine Access Center. A number of bloggers were on the call and, for an hour, we discussed the dangers of pneumonia in our country and worldwide.

Here’s the thing. Whether you live in a small village in India or whether you live in a comfortable home in the Tampa suburbs, pneumonia can happen to your children. In fact, a child dies from pneumonia every 20 seconds. The doctors on the call agreed that many are surprised that it is the number one killer of children under five. It certainly doesn’t get the recognition that other conditions do. But maybe that’s because it isn’t a huge first world health priority. For every child who dies from pneumonia in the industrialized world, 2,000 more die in developing countries. Why? Children there don’t have access to care and antibiotics.

We have access.

One doctor talked about the work children with pneumonia do just to breathe. He recalled a time in Africa when he held a nine month old baby in his arms who struggled and struggled to catch her breathe but could not. She died minutes later. What could have saved her? Knowledge about respiratory distress and simple antibiotics. Both Dr. Besser and Dr. Levine are working to increase access in these countries. Anyone can be trained to recognize the signs of respiratory distress. And antibiotics are extremely inexpensive to distribute. As dangerous as pneumonia is, it is also one of the most solvable deadly conditions we’re faced with.

I walked away from the conversation far more educated about the extent of this disease. I also sat down and appreciated just what my children have. Their risk of dying from pneumonia is far lower thanks to a pediatrician 10 minutes from my home, $5 antibiotics and basic knowledge about respiratory infections. We have that. So many do not.

Follow Prevent Pneumonia on Facebook. Take a moment to watch this quick video about World Pneumonia Day. Consider what you have. Consider what others do not. Learn what you can do here.

Remember the Toy Story Camera story?

Needless to say, my own camera was poised when my four year old opened it’s wrapping that morning. And in and amongst hollers of:

“Santa knew it! He just knew it!”

“It’s what I wanted Mommy!”

“The camera! The camera! The CAMERA!!!”

He was doing this…

My heart.

While something that cost so little and hardly does very much as all (apart from a few mechanical calls of “too infinity and beyond”), it brought the most Christmas magic to our morning, by far.

Wishing all of you this kind of joyful magic throughout the New Year.

TWO DAYS.

GAH.

I’ve been watching them squirm and struggle and grasp at the concept of how long the time we have left is and what it really means. Today my 7 year old asked me how many hours there were left until Christmas morning – exactly. Maybe he asked because hours are an easier measure of time to process than an entire day. So I told him.

38 hours.

I don’t think that helped much.

The Christmas wait is the first time most of us ever experience a painfully slow countdown for something. It’s the first time we ever look forward to something so much, become so SO desperate for it to be now already, that time stands perfectly, painfully… still.

And then the days somehow pass against their will and we face the surreal impossibility that it is here. A day away. Almost in our reach.

It blows your mind. It makes your stomach churn and palms sweat and ache for whatever it is that is almost ALMOST here.

Understanding time and how it moves and what you have to look forward to is impossible to explain. You just have to go through a wait like that to finally know what it’s like to want and imagine and taste raw, bitter anticipation.

Christmas makes it real.

And later, when you are a mature and wise grown-up, you can say, “You know, it was like waiting for Christmas morning.” And we all get it. We all groan inside and empathize and thoroughly understand the magnitude of what that waiting period really meant.

So.

I am trying to sympathise with my children as they lose their minds right now. As they struggle to sleep and find reason in their day and get along with their brother. (And froth at the mouth and throw crap and run around the yard aimlessly screaming…)

How could we possibly expect them to reasonable?

The most MAJOR wait of their life is about to come to an end.

Santa is almost HERE, people!!!!

My poor kids, right?

Patience. Sympathy. It’s hard for them.

…Pass the wine.

My 7 year old had a birthday party this weekend. He had a fantastic time plugging arcades full of tokens with his friends, playing some reckless version of field hockey mini-golf while elbowing his way through 18 holes in record time, stuffing his face with cake and pizza and doing everything he could not to snort lemonade while goofing off around a crowded table.

Normal, typical, 7 year old birthday party stuff. The kind of stuff I understand.

But my 7 year is known to be the quieter kid in the bunch. He spent the first two weeks of preschool under a table. He rarely makes eye contact with any adults. He adores his friends but is just as happy to spend an afternoon catching a baseball by himself. Teachers tap my window in the car line and let me know he’s been participating more in class and we give each other the thumbs up. He is cautious and thoughtful. He’s skeptical and often unimpressed.

He’s nothing like me.

But my 7 year old has more up his sleeve than I give him credit for.

So back to the birthday party this weekend. All the kids had lined themselves up on a concrete ledge outside of the arcade. They were waiting their turn for some bungee jumping trampoline contraption that I had seen before but always considered something “older” kids did. While he waited patiently, his friends went before him. Most just jumped, their faces revealing brief glimpses of terror, but laughing it off and and braving through it. A few jumped with more interest, not quite committing to a back flip or two. And then one looked like he really loved it, completely enthralled and flipping wildly. But only one. So I wasn’t so sure how my 7 year old would brave this thing. He gave me no clue as he waited and stepped right on up and let them strap him up.

Suddenly, there was a sly smile – a smile he tried to contain but couldn’t help. What did that mean? Was he actually excited about this thing?

And then, after the bungee guy had him all clipped in and was turning to crank him up, he started jumping. And wouldn’t stop. He jumped and jumped and then flipped and flipped and flipped again. He was set on flying high, flipping fast, pushing himself. His face was focused and resolved, this was important business. He seemed so sure that with enough will he could suspend himself in the summer night, upside down, right up there next to the moon. Higher and higher. He bounded and tumbled and flipped while we cheered him on. He wanted to get it done right.  He went for it with everything he had.

And he shocked the hell out of me.

After wards, while walking back to the car with his goodie bag swinging besides him, he admitted quietly that “It was awesome. SO awesome.” I was overwhelmed. I was so proud. But I looked at him in a way I hadn’t before.

I’ve seen my kid take risks and go on rides and do crazy things. But this was one more important reminder to myself not to paint him into any corners. Not to shrug off his shyness and accept he won’t do it. Never to assume I have my thumb over whatever or whoever he is – or who he is becoming.

These children of ours are not ours. They are their own people. Slowly developing and becoming what they will. He is nothing like me, he processes his world with an unfamiliar focus – but I stand guard over him none the less. I make room for what he is. I allow it and encourage it. But I can’t say that I know it or, God forbid, own any of it.

With pride and blinding adoration, I’ll just continue to do what moms do: feed him, dress him, help him with his homework, get him to practice, snuggle on him, stick his art work on the frig, embarrass him with far too many public displays of affection, yell “THAT A WAY BABBBEEEEE!!!” when he cracks a line drive. And then stand back.

And see how many flips he makes.

But I found a recent use for my old bunny hat the other day. It seems that my four year old buys into eating his carrots when he makes believes he’s a bunny. Maybe its a variety of little boy method acting. Whatever it is, it works.

And so here he is. Convincing himself that carrots are a fabulous idea. For a bunny.

Of course he then insisted I be a silly mommy and try on my old bunny hat. Wonderful. So I suppose I have to eat my carrots now too.

He doesn’t like fast slides. He doesn’t jump from most heights. He never wants me to push him too high on the swing. And he certainly won’t get on any semi-fast rides at Busch Gardens.

No way.

He thinks the hill we drive up and down on the drive home from school is a roller coaster. I’m not joking. He even puts his hands up and yells “Weeeeeeeee!!!!!….” So thrilling. Clearly.

My wild child.

So when I signed him up for gymnastics, I assumed this would be a challenge for him. He would have to jump off things. He would have to tumble and feel a little rush of adrenaline and trust that he was safe. He would have to consider the risks of falling and get past them. And when he saw the facility, he was excited to do it. But when I saw the height he’d have to jump off or the slide he would need to go down, I wasn’t so sure.

Yeah, well, with me locked up on an observation deck, behind a glass pane – he did it. He did it fearlessly. He did it proudly. He did without any of my coaxing at all.

I was shocked. And proud. So proud.

And then later introspective.

What is with that? What is with my kids not doing things for me? What is with their nerves and demands that they can’t do it, no way, and that was final.

And then doing it for someone else?

It was his first teacher who finally sealed the deal with potty training. Not me.

It was his father who finally got him to put his face in the water and keep it there. Not me.

It was this gymnastic teacher, who he knew for 15 minutes, who got him to jump off a big red square and balance himself high up on a bar with his arms locked. Not me.

No way.

And it is moments like these which remind me of the importance, the sheer significance, the enormous value other adults, teachers and family members have on my children’s lives.

Because here’s a news flash: No matter how much I think I know best as their mother, I can NOT teach them everything. Not by myself.

No way.

They respond differently to other adults. They have different expectations of themselves. They become different kids with other people. I am their mother and they can be my little babies when they are with me. I am their safe place. Its ok to show vulnerability with me. But for new people, interesting people, different people, challenging people – my children see something new. And they suddenly expect greatness from themselves.

I can love them so completely and entirely – but I can’t fulfill their learning to it’s entirety.

No way.

And I know this might be very obvious to most readers. I know this is a naive realisation. And if its any comfort, its not the first time I’ve realized this. But its just another reminder to let them go. Shove them out of that nest and let them fall and fall and be a little scared and even if I don’t think they will be brave enough to land on their feet, everyone else does. And they do. And I am left amazed once again.

I adore and thank every teacher, adult, coach and family member who has more confidence in my children than I do. You are changing my children. You are making them more than I could ever make them.

Thank you.

Mothering is a mind-blowing experience. Kind of like that hill I drive up and down on the way home from school. Weeeeeee!!!!!!

But will I be any less surprised the next time my children do something for another adult with confidence and flair – something that they swore they could never do, would never ever do, for me?

No way.

But today is my first day, at home, without my children. No kids, people. No kids until 2:30 in the afternoon!

What to do with myself.

*Silence*

It’s so quiet. It felt great at first. And then, pretty damn lonely too. No noise? …Does not compute.

I can hear the cat snoring on my bed in the other room.

It’s so very quiet.

But there is a strange pang within that I am trying to come to grips with.

No, it’s not a weepy, “oh I miss my boys” pang. It should be, right? I know. So throw in a side of guilt. I SHOULD miss them. And of course I do. But I’m ok with this moment of their new found independence. How am I so calm? Well, my wonderful kids did a fine job over these last few days of summer of making SURE I wouldn’t miss them too much. They did what they could to get under my skin just enough so that I would simply smile and wave, rather than weep and sob, as my husband’s car pulled out of the drive way. They’re thoughtful kids like that. And I love them so.

(And they were so damn ready for school. With beaming grins they practically whooped and hollered as they climbed into the car. How can I not feel happy and at peace about that?)

No there is another strange non-weepy pang within that I am trying to tease apart and figure out.

I think it does partly have to do with guilt. But really it’s this feeling that I need to be doing something productive with myself.

I have all of this time here. And it’s quiet enough to actually think. And nothing is getting any messier. I have the day at my finger tips. Most sane women would throw the laundry in the air, grab that box of bon-bons and dive into a whole round of soaps, dammit. After seven years of wiping asses and making sandwiches and ducking plastic toys – a little relax time is well deserved, right?

*wringing my hands*

I can’t quite get there.

You see for so long I have dropped any and all expectations of myself and my productivity to an all time low. If I can get myself showered and clothed well then YAY for me. Quiet time in the bathroom? It’s a lot to ask but weeee, its a nice bonus when it happens!

But now I can spend as much quiet time in or out of the bathroom as I’d like. At least until 2:30pm. Every other day.

But you see, I feel obligated to get my ass in gear. To DO something CONSTRUCTIVE already. Maybe something that earns money? Posts? Follow ups? Maybe start being more aggressive about ways I can pimp myself for some fabulous, oh so sought after writing cash?

*drumming fingers*

I’m still figuring that all out.

Or maybe actually get this place cleaned up for once? Laundry in its place. Dishes done BEFORE dinner. Oh, plan and MAKE dinner AHEAD of time! Clean out my closet. Change that damned kitty litter.

Or maybe I can finally be that mom who makes muffins and cookies and has them ready when they get home! And maybe I can be that mom who is calm and loving because I’ve HAD my “ME” time for the day. I can feel refreshed and ready to *bing* (cue cheery, June Cleaver smile) be that wonderful mom I swore I could be before I got knocked up.

What to do.

I can’t just do nothing anymore. I can’t just wallow in time to myself. My husband works his butt off all day, everyday (weekends too, I swear) all for us. SITTING AROUND just doesn’t seem… right.

But it’s weird too, you know? Just weird. Weird for me to prioritize my schedule the way I want to without any distractions from 8:00am – 2:30pm three times a week.

(That may not seem like that much time but, my friends, it’s a lifetime to me… a lifetime I tell you!)

So what have I done today so far? I have been productive but its been all about catch up and follow up and just doing things I should have had done days or weeks ago.

I didn’t even do the bills.

I didn’t make those muffins either.

And it’s 1:30pm.

Maybe I can squeeze those muffins in right now.

This new time to myself world is a strange, odd, unfamiliar transition for me. But I had better get used to it. Whether I make myself super useful or put myself first in whatever way – my kids are going to be spending more and more time away from me.

(Oh that weepy stuff WILL catch up with me, don’t you worry about that.)

Next year they will be in school all day, every day. Then it’s middle school and sleep overs. And then high school and driving. And then college.

My eldest is ONLY ten years away from COLLEGE.

Time to get my ass in gear and figure out what the hell to do with my time. Time to finally establish myself as a useful human being, capable and ready to make my mark on this universe in so many other ways than parenting.

Because I am more than a mommy. I am.

*soft kitty snoring*

*silence*

It’s time to go make some muffins.

I bet its one of the only one of its kind left.

And I would bet the school where I spent so much time is no longer standing either.

My father laughed when he saw it. It’s a crazy thing to look at now. The American School of Mogadishu. As if it was the most normal thing in the whole world. And to me, as an eight year old, it was. I told my father I actually missed Somalia and would love to go back someday. He looked at me like I was insane. And I looked at him like he was insane – HE is the one that brought my family over there in the first place. But nevertheless, Somalia was my adopted home for two years of my childhood.

Like any school, we had a playground. There were swings and big iron monkey bars where I spent most recesses, preferably hanging upside down, gazing out at the orange sand covering the grounds and the dry brush and acacia trees beyond that.

My classroom was like any classroom but with a cement floor and glass louvered windows on one wall. I practiced cursive, learned fractions and read about the nomads in social studies.

Our library was a cool reprieve. We were read “The Lion, The Witch and The Wardrobe” during circle time. And I would sneak off to read on my own. It was there where I learned to love to read. I think I must have checked out every donated Nancy Drew book they had at least twice.

I brought my lunch to school along with my water – which had been boiled and filtered to make it safe enough to drink. And like any other American kid, I brought peanut butter and jelly to school too. Granted that was easy to ship over and store. Our house had an entire air conditioned store room filled with canned, jarred and powdered foods. And all the Christmas candy was hidden far up on a distant shelf. My brother and I considered sneaking it down on many occasions. So we didn’t care how stale it was once we found it buried at the bottom of our stockings months later.

I thought it was cool that I didn’t have to walk to school. But I didn’t think it was cool that I went to school Tuesday through Saturday. Who goes to school Saturday? The traditional American schedule was changed to match the Islamic calendar. And we also went to school from 7am – 1pm. Because it was too damn hot to be out and about after 1pm.

I didn’t use the bathroom that often. I had a bad experience with a wasp hive nested under the toilet seat. I got away unscathed but my best friend ran out of there screaming once when a rat swam up the toilet to say hello. So I preferred to just hold it.

Once the sun had a set a bit, my brother and I would climb up the wall around our house and sit. We would watch herds of goats and sometimes camels go by. We waved at the kids. My brother knew some Arabic. I did not. Sometimes we would jump off the wall and run down the dusty road to find a local tea house. We’d duck inside and be given sweet, creamy tea made by a Somali child’s mother. It was delicious. Or other times we would jump off the wall and head towards my friend’s house who had lots of Barbie stuff. She also had a Dik-dik in her yard – which was very cool.

We heard the call to prayer five times a day. It was extraordinarily comforting. In the distance. Like a song. The world would stop. And we would watch. And wait.

I had a wallet with Mecca on it, I thought it was so cool, I felt so grown-up using it. I found that in the attic too this summer.

I also discovered rock music in Somalia. An unlikely place it would seem. But thanks to a crew of totally rad 8th graders and a tape deck left next to a pool at the local American compound, Joan Jett declared that she, indeed, loved Rock and Roll. And she sung also about Crimson and Clover. Over and over. So I decided I loved Rock and Roll too. And Joan Jett and the Blackhearts. Poolside. In Mogadishu. Nothing better.

A few times my mother would take me to the market for fresh food. We would have to look carefully. We never went to the meat section. I saw the carpet of flies before it lifted to reveal what meat they had. Apart from fish, we stayed vegetarian most of the time. But I still managed to catch a decent case of dysentery. I think most kids did.

I didn’t have a concept of how safe we were – or not. Somalia was at war with Ethiopia at the time. I remember hiding under the stairs when mortars would fly into town. It never felt close. I was never too worried. But the Somali people I knew protected and cared for me. So tall, beautiful, flashing smiles, kind and patient.

Once in a village far from Mogadishu, I was surrounded by so many children touching my hair. I didn’t understand. The translator said they had never seen blond hair before. Oh. Cool. No big deal.

As my father says, “Those were the good days of Mogadishu”. Good days. Even at eight I understood the depth of poverty there. Of all the places we lived, I never saw anything like what I saw in Somalia. Distended bellies, hunger, disease, flies, drought, muddy wells, nothing.

A woman tried to pass her baby through our car window once. She thought he would have a better life with us. With a house and electricity and an air conditioned store room filled with food, and clean, filtered water – he would have. My mother never forgot that little boy and used to wonder if she should have taken him. She also wondered if he was still alive.

So my children are heading back to school now. I am packing up their Target bought book bags and sending them to school with sandwiches, cheese-its and juice boxes. Their daily routine is as normal for them as mine was in third grade. Relatively speaking, and in the mind of a child, neither seems more extraordinary than the other.

I wonder, with my 37th birthday looming, if it is a little late to learn this lesson. I am thinking it is.

As a child there are constants in your life. People. Places. Things even. There are traditions and cycles and schedules we depend on. This is where we always go for groceries. This is the bowl I always eat from. This is how my grandfather’s garden smells. This is where we go on summer vacation. This is what my mother always says. This is how it is.

I think as children, we fixate on these constants. In the first years after we arrive into our world, we experience extraordinary change. There is so much to learn and realize and grow up into. As our world moves and shudders under our feet, we steady ourselves with what is always there. What we know. If I walk into my home, my room will be up the stairs and straight ahead. The Cheerios are always kept in the cupboard over the stove. The house key is kept on a string inside the hall closet door. Always. And, as children, if we find our constants change even slightly, we panic.

My boys depend on routine. It is their religion. They move in their cycles, they are comforted by them. I joke about their OCD tendencies but completely understand them. What do you mean a fat man named Santa comes into my home once a year to deliver stuff? Are you sure thunder is perfectly ok even though it sounds like the world is exploding above my head? Wait, we’re floating on a planet in the middle of a wide unknown called space? *breathe* Mommy will have my favorite yogurt ready for lunch, we always drive this way to school and I get to stay up until 8:30pm on weekends. All is well.

But then there are life changing moments. You move. Your school changes. Your friends are far away. What was constant is no longer. A new normal is established.  I understood these changes well as a child. And, because children do learn new things quickly while clutching onto remaining constants, I assimilated when needed.

Because there is always some familiarity somewhere. My grandfather’s garden still smelled the same, no matter how many years had passed before I stood in it again. My mother always said those same kinds of far too annoying but strangely comforting things. And decades later, that very same grocery store I shopped at as a child still exists – with the same graying employees smiling down at me in line.

Death does a fairly good job at ripping most constants (the constants that were always always there no matter how far or how often I moved) apart.

Voices that soothed and moved you through a new world are gone. The world’s they created, the homes they kept, the things they bought to fill them, the foods they made, the gardens they grew, the traditions they kept, the sayings they always said over and over again… that is immediately gone.

You can’t return.

You can’t hear the door creak the way it used to and slam behind you. You won’t find the Cheerios kept where they always were. You won’t hear the sounds of your mother – her certain clicking, scuffing pace down the hall.  And, when you wake up far too late on a Saturday morning, you certainly won’t hear your grandmother singsong from the kitchen:  “Good morning Merry sunshine, how did you wake so soon? You chased the little stars away and shined away the moon!”

It’s gone.

And that is how the world is.

Things fall apart.

Things change.

Nothing is constant.

And as adults, we regroup and reshape and recreate our families. We make new constants. We surround ourselves with new everydayness. The Cheerios find a new home in your pantry. And maybe you redo what they did. You recreate it subtly with every hope that the constant in some quiet, private comforting way remains.

I miss those people. I miss those places. I miss those things.

With a nostalgic, regretful, desperate ache rooted and wound into my gut – I. Miss. It.

Still. I have new people and new places and new things.

Apparently this is how life goes.

Things fall apart. Things change.  But they renew again. And move forward.

Breathing and hoping.

But missing.

And eating Cheerios for breakfast every single morning.