After the surgery, I realized I should write a simple narrative about the whole experience. When I trying to figure out what I facing, I found similar stories either irrelevant, totally freaky, or just plain non-existent. I realize this is way more information that most of my friends and acquaintances want and I totally get that. You are not obligated in any way to read this. But I did want to put it out there so if someone is looking for more information, it’s here (because the internet is awesome like that). This is my part to make it better for someone else. And since I wrote this earlier, I’ve updated it with the most recent news where appropriate.

Brain surgery is bizarre. Say it out loud – it even sounds strange.

Sometime in the middle of November 2009, I woke up to a killer headache. I don’t have migraines, but thought I was developing one. Sure enough, I even had what I believed was an “aura,” a short time of blurred vision and sensitivity. The headache would not respond to any medication and lasted for several days. Again, we thought it was just a migraine.

Finally, I had enough and saw my doctor for something that would JUST MAKE IT DIE ALREADY. She gave me Tylenol with codeine, which did nothing, and scheduled me for a CT scan on Friday, November 20th, to be safe.

I’m so grateful she did. Friday came and I had to take my son to the pediatrician that morning. My head was hurting, and Nate proved to be a handful and a half at the doctor. Finally, we got to the hospital for the scan.  I was a basket case since I had to go alone, but it was quick and painless. We left to make a quick stop at the library and while I was checking out, my phone rang. I picked it up right in front of the librarian (!!) and in about 20 seconds, my world changed.

It was my doctor saying that they had found a “mass” in my brain and would I please go to the hospital immediately because they wanted a MRI? I do remember the word benign was used, but my word, that really doesn’t soften the blow much.

The rest of the day was spent in panic, trying to find a sitter for Nate (thanks, Michael!) and literally begging the MRI technicians to please wait until my husband Daniel could be with me. Late that night, we got a more specific diagnoses: it was likely a benign cyst or lesion and there was no emergency. I was to see a neurosurgeon for an upcoming surgery. I felt so relieved. When you are discussing brain masses, a cyst is an excellent one to have.

Later, the neurosurgeons (I have two – collecting doctors is an expensive hobby!) thought it was a benign tumor called an epidermoid, which is made of skin cells. I spent three months under the care of them and an ENT (ear, nose, and throat doctor), who diagnosed me with Meneire’s Disease, a type of vertigo. Turns out, my tumor was mostly asymptomatic and discovering it was most likely a total fluke.

We had two choices for hospitals (and corresponding surgeons) and chose the one we felt the most comfortable with. My main surgeon is conservative, in a good way, and it ended up being a very good choice post-surgery.

Because the doctors felt I was in no immediate danger, I was scheduled for a craniotomy, tumor biopsy, and resection at Fairfax Hospital on February 1. During the six weeks of waiting, I was able to enjoy the holidays with my family in a very normal way and spend a lot of time with my husband and son. I loved having that time, but it wasn’t easy. I was nervous about the surgery and the possible side effects.

The end of January 2010 rolled around and both my parents and in-laws came into town to be there and help take care of our one year old. The closer I got to the actual surgery date, the calmer I was. I was prepared and ready to have it behind me.

The hospital told us to be there at 5 am, so I knew I wasn’t going to get much sleep. That fact was confirmed when our son was up the whole night with a cold – nobody got any sleep! We drove to the hospital already tired, but found the place empty. It was bitterly cold out (one degree), and thought that the weather had delayed the staff. But no, they were just eager to not have us be late. So we waited for a while and then I was called in for a pre-surgical MRI. I must have fallen asleep during the procedure, because it was over before I knew it and another nurse was there, telling me to put on a surgical gown and get in the wheelchair.

I freaked for a minute because I thought there would be some time in-between the MRI and the surgery where I could talk with my husband, parents, and father-in-law. But everyone was behind schedule, so into the pre-op room I went (rolled). I was stressed at this point for a couple of reasons: 1) it was very cold and I was wearing next to nothing with nothing accessorizing it 2) I didn’t have a chance to see my parents because only one person was allowed in the pre-op room 3) things were going quickly and it was BRAIN SURGERY, for pete’s sake.

Thankfully, the answers for these problems came quickly: 1) a very kind nurse covered me in blankets from an oven. AN OVEN FILLED WITH BLANKETS. It was heaven. 2) the nurses made an exception and allowed everyone to come into the pre-op room and 3) the doctors, nurses, and residents all were professional and caring,which helped calm me down.

And they had a miracle drug.

Before the actual surgery date, I was scared of walking into the operating room on my own and laying down on the table. You know, like a sacrificial lamb. “Here I am, doc, cut me open now.” Not cool.

Thankfully, medicine is modern now, and they knew that I would be scared of that. So before I even left the pre-op room, the anesthesiologist gave me me something in my IV. I didn’t know what it was, but I just remember thinking “Wow, I’m drowsy now.” And that’s it. I don’t remember kissing Daniel goodbye. I don’t remember going into the OR or them putting me under. The next thing I remember, I was waking up in recovery.

I LOVE THAT. The not remembering part, not the recovery part.

Because recovery sucks. Badly.

I remember noise and nurses and a nasal cannula.  I thought Daniel and my parents were in the room, but it was just the meds. There were tubes everywhere: a catheter, two IVs, oxygen, morphine drip, muscle pumps, and automatic blood pressure cuff.

I asked the nurse if it would get easier. She said yes and I thought “Ok, then. I can do this.”

It did and I did. Sometime in there, I had another MRI and my surgeon came in to say that 40% of the tumor was still there and that it wasn’t benign.

I knew. I don’t know how, but I remember not being surprised. Maybe it’s the drugs, but I don’t think so.

I spent three and a half days in the hospital and met a woman who was convinced the nurses had kidnapped her from Penney’s, several kind nurses, one very not-bright nurse, a screaming roommate, another screaming hallway-mate, and one resident who woke me up at 5 to rip the bandage out of my hair.

There were no complications and I was allowed to go home after three and a half days. Everyone seemed surprised at how well I was doing. Mostly, I was upset that I couldn’t take a bath by myself and had to take the IV pole to the bathroom.

The transition to home was a bit more difficult that I thought it would be. When we were leaving, I told my husband I wanted McDonald’s to go. That changed when I hit the outdoor air – suddenly, I felt weak and queasy. Compared to the other people in the hosital, I was doing great, but the reality was, I was recovering from major surgery and I had a long ways to go before doing anything normal.

So, I slept, ate very little (the strong medications made everything taste off), and slept some more. Sleeping was difficult, with one side of my head very sensitive and the other hurting. The steroids (to prevent infection or meningitis) also gave me intense, frightening dreams. But I was tired and weak, and that helped.

A few things surprised me about recovery: one, the strange side effects of the medication. If I took a full dose, my skin crawled. They messed with my internal temperature. I was sweating and freezing at the same time. They also woke me up at exactly 6 am every morning.

Two, how surgery on one side of my head left marks literally all over my body. I had bruises and scrapes on both sides of my head and near punctures in both ears. There was a scrape on my back, huge bruises on both wrists from failed IV attempts, bruises from blood thinning shots on my belly and IV marks on my chest and feet. Brain surgery is, apparently, a full contact sport.

Three, how weak I feel. My legs are like jelly a lot of the time, though they seem to be getting better. I tried to do simple housework this week and it was exhausting. I find it very difficult to think through something like cooking. Just yesterday, I did a load of laundry without any soap. It’s like being pregnant, except worse (and no, I’m not).

And then there is the waiting. That’s the worst. The surgeon told me that the tumor was a glioma – which wasn’t good news. From my research, I knew that meant malignancy. Tumors are graded (one through four, with four being very bad) – and he wouldn’t know the grade until the pathology report was in.

So we waited and waited and prayed and waited. The chances were very good it would be a level three or four tumor. But I was continuously reminded that I didn’t know what it was and that for now, I had the grace I needed. And I really did. Of course, there were meltdown/freak out moments, but there was peace.

Finally, on the 12th, the surgeon called. They had the results and could I come in a couple of hours?

Hello, stress. But God was gracious and we were told it was a level two astrocytoma. It is incurable (not completely removable), but slow growing, meaning I’m not in immediate danger. The surgeon said it could grow or change levels, creating a big problem, but for now, I was ok. I do have the option of one round of radiation to shrink what is left – we’re still getting information on this.

It was good news, at least in the short term. I could live for many years with this tumor just sitting there. I could also live for a few years and then discover that there isn’t much time left. There’s no way of knowing.

**SIX  WEEK UPDATE**

(After consulting with radiation and chemotherapy oncologists, the consensus seems to be that I should not pursue radiation or any other treatment at this time. Because the tumor is on my brain stem, I can only undergo radiation once. Therefore, it is being saved for when it metastasizes into something more dangerous. We are getting a second opinion on everything, but for now, this seems clear.

I also seem to have little to no side effects of the surgery. I had moderate hearing loss afterwards, but it seems to be better – that will be tested months from now. I’m expecting there to be some permanent loss, especially since my auditory nerve is directly in the way of the tumor. I also find myself with an occasional speech impediment. Certain words are very difficult to come up with – my brain does not seem to know what they are. But all this is minor and doesn’t bother me. If it continues, I might see a therapist.

I’m also feeling much more normal. 15 days after open brain surgery, I drove in the snow without any side effects. I think that’s a medical marvel. It took about a month for me to to feel more like myself and six weeks for me to hold my son without my head hurting. I do have a bald spot on my neck and head, but 90% of it is hidden – most people never notice it. My scar is about 6-8 inches long and is bumpy and raised, which I’m not thrilled about it, but it doesn’t bother me too much. The four to six weeks range of healing seems to be very accurate.)

**END UPDATE**

So how am I?

The uncertainty is unnerving. I want an answer, but cancer doesn’t give that. This is cancer. Really. It doesn’t seem real, but it is. I have brain cancer and I will have it as long as I live.

I’ve been following a pastor from Texas named Matt Chandler. He was diagnosed with a similar, but higher grade, brain tumor the same week I was. In his latest update, Chandler talks about what it means to be “cured” in the world of brain tumors: living as long as God gives.

And since I’m thinking about the reality of the unknown future, I was struck by the passage he referenced in Psalm 90.

⁹For all our days pass away under your wrath;
we bring our years to an end like a sigh.
¹⁰The years of our life are seventy,
or even by reason of strength eighty;
yet their span^[c] is but toil and trouble;
they are soon gone, and we fly away.
¹¹Who considers the power of your anger,
and your wrath according to the fear of you?

^12(T) So teach us to number our days
that we may get a heart of wisdom.
^13(U) Return, O LORD!^(V) How long?
Have^(W) pity on your servants!
¹⁴Satisfy us in the^(X) morning with your steadfast love,
that we may^(Y) rejoice and be glad all our days.
¹⁵Make us glad for as many days as you have^(Z) afflicted us,
and for as many years as we have seen evil.
¹⁶Let your^(AA) work be shown to your servants,
and your glorious power to their children.
¹⁷Let the^(AB) favor^[d] of the Lord our God be upon us,
and establish^(AC) the work of our hands upon us;
yes, establish the work of our hands!
Nobody knows how many years they will live. We tend to forget that and assume that because we don’t have the word “cancer” hanging over our heads, that everything will continue on as normal indefinitely.

It won’t. Someday, we will both face the unknown.

And now, the test begins. Can I face the unknown and still see God’s hand? So far, I can. And as our pastor reminded Daniel and I recently, I don’t have to have faith for the future. I just have to have faith for right now.

And for right now, I’m ok with just now, most of the time. I can say that God is good, even if cancer isn’t. I do often get frustrated at how unfair this is and why it happened to me. And then, I get a glimpse of a bigger perspective from something: reading my Bible, talking with Daniel, or making something for my son, and I’m happy. Really truly happy.

I think that tension will always be there – the tears together with the joy, the frustration and the normalcy. It’s not the way I want it, but I can see the grace in it. And I’m grateful for that grace (most of the time).

And that’s how I am. Really.

My doctors are excellent, my age helpful, and the diagnoses encourating so far.

If I had to have a brain tumor, this is an excellent one to have. Of course, I don’t have a choice.

This article by one of my favorite bloggers, 6YearMed, makes me believe in the medical profession when so many people I know belittle doctors as business men who want nothing more than an insurance payment. Doctors like the writer have literally saved my little family from falling apart. And on February 1, they will (barring God’s alternative) save my life.

God’s gifts are many. This includes the medical field – those working to temporarily save humans from this very fallen world. That is a honorable calling and one that deserves our respect and gratefulness.

Little Bird

Working in the Emergency Room is a frustrating experience, in the sense that the large majority of what comes through the doors is a complete misuse of resources. I found myself jaded and more unhappy than I had been in ages. But healthy kids are fun. And it’s impossible for me to be mad at a 3-year-old. So even when I didn’t believe in what we were doing, I could at least believe in him.

Healthy, snotty 3-year-olds whining in the waiting room paints a blithe background for tragedy, when it does roll in the door. And after she has passed, I hand out stickers and Popsicles and truly thank God for their tiny, sticky, healthy hands.

EMS calls in, and the static over the line only adds to the presupposition of chaos on the other end. There has been a car accident–two adults and a child. The two adults were dead on arrival, but the child, a girl, unknown age, had a pulse. At least initially. Somewhere along the road, they had lost that, she was intubated (breathing tube) and they had been doing chest compressions for twenty minutes. When she rolls in the door, no one knows her name, or anything about her. She looks to be about six. Things move fast, but she lies still. Chipped, pink fingernail polish is scrubbed off. Ribs break, heart doesn’t beat. The Emergency Room attending asks for silence, as an ultrasound shows no cardiac activity and then asks, calmly, if anyone has any objections to stopping. It’s been a very long time, though it feels short. Lines and tubes are removed, her face is cleaned, and she is tucked into a sheet and taken to an exam room. We wait to find out her name, and who will claim her.

A mother steps out into the hallway and asks me how much longer it is going to be before I have her prescriptions ready. Like I have been doing paperwork or online shopping and neglecting them.

And as sad as we are that the little girl has died, there is some sort of strange comfort in knowing that her parents died too. That they don’t have to live without her. It’s a large tragedy, so we think, that somehow could be worse.

Until a disheveled, working mother shows up, after hearing of the accident. I don’t know who the adults were in the car, if one was the daddy or grandma. Maybe they were older siblings or babysitters. But one of the adults in that car was not the little girl’s mother, because there she was, standing at the counter, asking about her baby girl. “Was she in her car seat?” she asks, which I find so incredibly sad.

I am certain that the end of the world will sound like the deep, mournful cry of a mother who sees that her child has died.

And at the end of it all, she thanks the nurses and chaplain. She wipes her eyes and asks if she can donate some of the little girl’s things to the hospital. That morning, she woke up, had a healthy child and normal life, but now she will walk out of the hospital with nothing. How do you come back from that? I would be angry and hateful and broken.

I am the impatient woman tapping my foot, angry for sickness and delay. Oh, to instead be the devastated mother who says, “This is the worst day of my life, but still, I am grateful.”

From 6YearMed.

This month you turned 15 months old. Time flies when you’re learning to jump off furniture. You continue to be my little daredevil/explorer/adventurer.

These past two months have brought a lot of changes: good, hard, and everything in between.

Your dad got a job (yayayayayayay!), but we couldn’t move into our new apartment for another six weeks, so that meant you dad had to commute to Virgina every week. Sometimes, I went with him, but it was always hard to leave. Families aren’t meant to be separate.

So many times, I wondered what you thought. Did you wonder if Grandma and Grandpa were your parents? Do you think you have four parents?

You seemed to adjust well. You smiled when we came back, and waved when we left. We were sad to leave, but our family had to be split and so we mad do.

God is faithful. Do you not remember? That saying should be something we remember every morning, every evening. It’s hard at times.

It’s hard when your daddy is laid off twice in six months. It’s hard when I feel homeless, relying on the generosity of family and friends. It’s hard when your family is apart and you’re left behind.

But it’s still true. And oh, how good it is.

Finally, it was October and we could go home. For good. For real. We packed up our things from NY, said goodbye and thank you to everyone, and moved back into a new apartment. We found a new grocery store (or three!), a new Target, and a new library. We moved the world’s heaviest couch up a flight of stairs. Thankfully, we have the same friends and same church.

We moved in and laughed when you fearlessly walked off the edge of the couch, chairs, and coffee table. We covered our ears when I gave you a push popper and you delighted in its noise for hours. We got our first television and you ignored it. We said “No, Nate, don’t touch that (fill in the blank)!” four million times a day.

And it was good. Not perfect, but real. And we were us again.

This month, we start life again, in many ways.

What will a normal season be like? Now, that we’ve moved, we won’t have surgery, job hunting, or anything else life changing. I think part of me will just expect life to blow up again, but I really hope it’s just quiet for a while.

I want to balance the budget, sleep in my own bed, and hang out with you and your daddy. We have parks to discover in our new town and new food for you to taste (macaroni! pizza! tacos! and other healthy choices).

So here’s to a new life, kiddo. No matter what it brings, it’s going to be great.

I love you.

Mama

I had no intention of this blog ever being this quiet or it becoming a repository of my monthly letters to Nate. I read a lot of blogs, and while I admire and look forward to their content, I struggle with owning one myself. I like my writing being out there and I like the idea of blogging, but I actually HATE it. That’s why there is such longs gaps between my posts.

I really don’t have a niche that I want to fill. There are thousands of bloggers out there (mommy bloggers, most with absolutely NOTHING to say – we all hear enough about poop and nap times, I think) and I have nothing different to offer. And I’m totally cool with that. That isn’t my life right now.

So, I’m going to hang on to this little piece of cyberspace, but it’s really for me. It’s for me to look back and say, “Hey,  look what we were doing then!” I like that. And if I totally stop posting, that’s alright. Because that’s no longer for us.

We have been in VA for a couple of weeks now – hooray! It’s been a busy time of unpacking, laundry, and getting used to a new town. It’s fun, if a bit stressful sometimes. I’ve only gotten lost a couple of times and have even managed to figure out 66 on my own.

It’s been a while since my last post. I have Nate’s letter for the past two months in my queue to be published, but there really wasn’t anything to say in the meantime. Life is quiet, still (other than the unpacking). I’m so grateful.

So for now, we have nothing new to report. And we like it that way.

But seriously, if you do read this, thank you. If you’ve prayed for us along this crazy year and a half, THANK YOU. We’re looking back on the other side, and we are so incredibly blessed. God is good and so are His people. Thank you.

This month you turned 13 months. In the last four weeks, you’ve become a man of many adventures. You’ve traveled to new places, experienced vast extremes of weather, tasted exotic foods, and mastered crazy feats of development.

Maybe that’s overstating it. But you sure are thrilled about life.

TRAVEL
This month, you and I traveled to Texas to visit my family. I was dreading the long travel day, but you proved to be a very good travel buddy. You flirted with everyone near and far, male or female. And oh, what fun toys planes have! Seat back tray tables proved to be infinitely entertaining: up, down, up, down, up, down. While in the crazy hot south (over 100 for DAYS), you traveled to the river, to Austin, and hit it off great with your first homeless man.

Oh, and you got the experience the total adrenaline rush of hearing our names called in the airport. Not as in “Whitney and Nathaniel Archer, please come to the gate so you get your free tickets,” but as in “Whitney and Nathaniel Archer, please come to gate X because your plane is leaving now.” Boy howdy, we flew. And I mean BEFORE the plane took off (thankfully, with us on it).

FOOD
This month, you experienced the wonder of real food. While in Texas, someone gave you a pig rib to chew on. I think your taste buds looked at that pork, died, and went to BBQ heaven. You chewed and chewed and chewed. And then you screamed and screamed and screamed when I had to take it away. Later, you got a piece of brisket and the same process commenced. You win the gold in BBQ chewing.

You also tasted (and loved!) feta, onions, saltines, spaghetti, lasagna, chocolate chip cookies, pasta, whole wheat crackers, scrambled eggs, and GRAPE JUICE! You’d dehydrate without grape juice. .

CRAZY FEATS
Which feats shall I talk about? How about a list? Lists are teh awesome.
- first word: uh oh (over and over and over and over)
- saying wow, ooooooh, and ohhhhh
- motioning all gone, bye bye, blowing kisses, handshakes
- pooping 7 times a day (seriously, kid, how do you do it!?)

A literal 24 hour period shows how your brain is figuring out the world: one day you never noticed that there was anything in the kitchen besides a table, and the next day you’ve learned that there are cabinets and drawers, that they open, AND that they contain bountiful treasure. Only when I caught you with your grandmother’s 409 bottle (!) did I realize how much trouble I was in.

Every day, you find something else that’s off limits that you’re going to touch four thousand and two times before tomorrow. But you’re a happy, crazy explorer and I love you for it.

Me

The job came together very quickly. Nate and I had just arrived back in NY from a two week trip to TX, when Daniel said he needed to go to VA for a job interview. Cool! I thought. Grandma agreed to watch Nate, so we packed our bags, left the family reunion early, and beat it down to our home state.

We spend the weekend with friends, laughing and talking over coffee, chili, and cooking movies. Monday, Daniel left for the interview while I walked the aisles of Target, nervously praying. An hour passed with no news and I got worried. But then he called, saying he was promised the position. And right there in the Misses section of the Dumfries Target, I had an awesome day.

The official offer came all of an hour and a half later and we happily accepted. Awesome things like insurance (!), paychecks (!!), and paid vacation (!!!) are suddenly a reality again. Daniel has a job!

And get this: he’ll be working as a contractor with the Marines. See? Stability. They’re not going anywhere anytime soon.

Ooo-rah!

“In the difficult ‘big things’ that come our way there are many questions that flood our minds and emotions. You know the ‘why’, ‘how’, ‘what’, ‘who’ and ‘where’ type of questions. Some questions come at you like waves on the beach one after the other while others you hunt down, sometimes in hot pursuit of them. For me I have found chasing the ‘why’ question to be the least productive and in fact actually a waste of time. Do we ever get an answer to that question that is truly satisfying? I don’t think so and at least for me it often ends up an exercise in self -justification, self-pity or blame placing. Not a very healthy place to take up residence and not a place where I find God hanging out much. For me there are other questions that are much more powerful, much more life giving and more God finding. The ‘what’, ‘how’, ‘who’ and ‘where’ questions area much better place to live in. Chasing down answers to these questions are allowing me to leave the way I want to leave.  I want to leave with integrity, grace and gratitude so these are the questions I am choosing to ask myself these days to help me stay that course:

What is God trying to teach me in this?

What do I need to lean about my myself?

What is going to be revealed in me?

What if all that God has taught me to this point has been preparing me for what  is next?

How can I respond to this situation with integrity, grace and faithfulness?

How can I find God in this? Can I embrace that God is in the midst of this?

How can I be anything but grateful [for what I've been given up 'till now?

How can I be anything but thankful that God has allowed me to minister to [others]?

Who am I going to become in this process?

Who is God bringing into my life right now and for what purpose?

Who can speak truth into my life that I need to listen to?

Where am I placing my trust?

Where am I finding my identity?

Where am I going to serve next and can I embrace this as an adventure with God?

These are the questions that bring me life, hope and faith these days. My guess is that in a difficult situation you might be facing it is questions like these that will bring light to dark places. Remember we get to choose our response. It is never helpful to play the victim, to think we have no choice in a situation. That posture gets us nowhere and in my case is an act of faithlessness. It is saying that what I am going through is outside Gods control. It’s denying, as crazy as it may seem, that God may just be in this after all. This does not mean denying the real pain of a situation or acting like it is all no big deal or playing some ‘happy Christian’ game.  It’s just the opposite, choosing these responses and ones like them allow us to embrace our pain and grow through it.”

This week you turned one year old. So we celebrated. How we celebrated!

Your grandmother made cupcakes (chocolate, of course!), Susan made sugar cookies, and others brought more food. Your father and I blew up balloons and decorated with vintage toys. The present pile grew to ten times your size. It was simple, but perfect in size and scale. We ate and ate and ate. You were our entertainment as you toddled around laughing and flirting with your adoring guests.

We had a lot to celebrate: a year of grace.

It’s been a year of layoffs, of doctors, of surgeries, of insurance headaches. But here you are, pointing at the dog and saying “ba!” You can make sucking noises. And here we are, living in New York, waiting on a job. And it’s good.

I think the biggest blessings of this in-between time is watching you thrive. You eat like you’ve never eaten before and have gained several pounds already. You love the continual attention of your grandparents and aunt and uncle. You’re walking with confidence and always trying new sounds every day. This morning, I found you opening the living room window. You had found the crank behind the curtain and figured out how to work it. You’ve figured out that the fridge contains food and that your grandmother opens it by pulling. So you pull it and get frustrated when the door won’t open.

You’ve discovered a new love: animals. You follow the dog around whenever possible, arm extended, legs running. You like the cat too, but I’m pretty sure you like her tail more. Grass isn’t as awful as it used to be and you’ve run across the rough gravel barefoot. Your daddy and I took you to see the neighbor’s cows in your metal wagon. You liked the wagon, but were not impressed with the cows. They weren’t impressed with you either.

Bumps and bruises abound. So does discipline. Today, you attempted three times to pull a tablecloth (and lamps and whatever else on top of them) off. I swatted your hand and you pitched a fit. We’re working on it.

You’re happy and growing and moving. And that makes us happy.

Happy Birthday, Nate. We can’t imagine life without you – it’s even better than before!

Love,
Me

I’m writing this from the living room of our new commune home. Four days ago, we put our furniture in a storage unit, packed what little we needed for now, and drove six hours north to western New York. We’ll be living with Daniel’s family (parents, brother, and his wife) until he can find a job in Virginia. So, for now, life is once again on hold.

Honestly, waiting gets old. We want SOMETHING to work out, but for now, this is where we are supposed to be. And there is some peace in that. Meanwhile, we’re enjoying family, buffalo wings, and cool weather.

I really miss our home.

]]> http://shutterbabe.wordpress.com/2009/07/05/transition/feed/ 1 shutterbabe http://shutterbabe.wordpress.com/2009/06/19/9th-10th-and-11th-month/ http://shutterbabe.wordpress.com/2009/06/19/9th-10th-and-11th-month/#comments Fri, 19 Jun 2009 16:26:52 +0000 thearchers http://shutterbabe.wordpress.com/?p=264 ]]> Dear Nate,

This month you turn 11 months old. I win the latest Mom ever award, but here goes.

Since I last wrote at 8 months, life is go go go. You NEVER STOP MOVING. Whenever we try to hold you still even for a minute, you roar. It’s an awful sound, really. I’ve only heard the like of it when a doctor draws blood.

What a force you are!

Highlights of the past three months:

- I’m still laughing at the day I walking in the living room to discover you on the little kiddie chair, belly down, with limbs and head dangling. I watched in horror as you dropped a toy, then literally dove head first to get it. It’s a good thing your neck is made of steel, buddy.

- You are constantly testing your boundaries, seeing if we’re watching. We are, but you’re sure to voice your displeasure even without words. When you Daddy tells you “No!” more often that not, you’ll turn around and bark a sharp grunt at him in anger. It’s quite hilarious, but only if I’m the one watching.

- Your grandparents visited for two weeks and they were very amused at your energy and our exhaustedness. When your Daddy told you, “Nathaniel, no prancing around in the bed, please,” I thought they were going to lose it. You’ll have the best vocabulary yet if he has anything to say about it!

- When you’re in public, you’re sedate and quiet, being sure to watch everyone before acting. But at home, well, frankly, you often become crazy. There’s that look – a wild gleam, bright eyed. Then we know Nate doesn’t need sugar for an extra shot of energy.

- As you test your boundaries, we enforce them. Often, I will discipline you for a clear infraction and you won’t shed even a tear. But when I turn your head so that you see that I’m talking to you, that’s when you bawl.

- You’re learning to stand more and more and even walk a couple of hesitant steps. You’re so short, it’s hilarious to see a mini adult imitating us. It always gets you attention (even better than crying).

- I loved it (still do!) when you understand that I was going to “get” you. You giggle and crawl as fast as you can away from me, but sometimes you get mixed up and crawl TOWARDS me. That’s usually when I lose it in my own laughter.

- And still, the ever-present “mamamamamama.”

And lately, at 11 months:

- You had your major palate surgery on June 2. It was NOT fun and you were in the PICU for three days. But, we had been through this before, so we weren’t as nervous. You looked awful coming out of the OR with a bloody nose and threads coming through your tongue. You recovered slowly, spending the next week being very emotional and clingy. Even in the first day, though, you showed your sheer willpower to move even when your arms were in restraints. Grandma laughed and laughed when you used the edge of your mattress for leverage to sit up in bed.

- I think the worst part of this whole year will be the hospital stays. I HATE them:  how you look when you come out of the OR, how you can’t eat for hours beforehand, how the morphine and codeine make you groggy enough to make you miserable but not sleepy, and how little rest the nurses let you get. It’s seriously awful. The first time, I kept replaying it in my mind, “It was so bad – how can people do for weeks?” But this time, we were ready. I knew that it would end and you would recover. So, even as the PICU alarms went off 30 times an hour and you wouldn’t sleep, I knew that it would end. And I knew we would be us again.

- Even in the hospital, there is humor. The two parts I remember are these: first, that I knew you were ready to go home when you were stealing gauze, throwing toys out of the crib, and licking your IV pole. When you started doing laps in the metal cage (cross out) crib, the nurses started the check out process. The second part was when you begged me to hold you. You were flailing your unbendable arms and suddenly, sent one of your arm restraints flying. You stared at it for a minute, then turned to me and gave me the biggest grin I’d seen since surgery.

And now…we’re done. You can eat without food coming out your nose. You can make sucking sounds and we’ll teach you to eat from cups and straws. You look and act “normal.” When we found about the cleft, people told us the first year would be hardest. Apparently, we decided they couldn’t be right, so we added in two layoffs, a move, and insurance and doctor battles. And you know what? They were right.

Sometimes, I wonder what it’s like to have a “normal” baby: one who eats and nurses and doesn’t require mouth appliances before three months of age. Surgery sucks and it would be wonderful never to go through that again. I don’t know why God allowed you to be born with cleft – we’re just starting this journey, after all. But I am confident that it is good and will be good.

You are our normal and we love it.

Love,

Mama