The Halloween That Almost Wasn't

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Thanks to Sandy, our Halloween was delayed, but you won't catch me complaining because there are so many out there whose lives were impacted in far worse ways. We still have each other, we still have our lives and we still have power and the comfort of knowing that everyone of our friends are present and accounted for.

You must understand though that Halloween is indeed, my favorite holiday. And this year brought a delay, no carved pumpkins, no roasted pumpkin seeds, trick or treating in November, no Halloween  photo cards of the kids wearing their costumes. But all in all it kind of worked out because I was kind of too migrainy (yes that is now a new official term in my life) to really be up for any of that anyway.

Oh but wait! Evelyn did make a batch of Pumpkin Bread all on her own! And it was delicious! Also Liam turned four! ( I'll have to post those pictures too! OMG terrible mom alert)

Well, today it was 60 degrees or so and the sun was shining and so I took alot of meds and off we went for pictures. You can see Evelyn cracking up in some of them, that's because I was in a stopped position and lost my balance and Batman rushed in to save me by trying to push up on my booty and nearly got smashed by said booty. I went all National Geographic Photographer and just kept shooting because that is the true Ev! 

And Me! And Sissy Too!

My children are drawn to books, any book will catch their eye. On our recent evacuation to Philly due to Sandy we took along books because with us, books ARE a necessity. But Ev likes to look at what she calls "The Holey Bibble" (that is a whole other post in and of itself), she likes that the pages are thin, she likes that some things are written in red, she likes that some of it is about Jesus (see we are not TOTAL heathens). Liam wanted his turn with the Bibble because Ev had her turn.

So he was looking at the Bible and at the beginning where it has paragraphs written in different languages from around the world. Like an introduction part? He looks at the part written in Chinese and he points to it and exclaims "Mama! Like ME! Like SISSY!!" And he makes the sign for China. And then he proceeds to talk about what he sees for a good minute or two before he calms down. I have no idea what he was saying. I have no idea how he knew how to distinguish the Chinese writing on that page from the eight or twelve other languages on that page but he definitely put his little finger on the Chinese and he definitely knew what he was talking about.

Today I was watching a video on Facebook that a friend posted of her daughter being silly. It just so happens that they too, are an adoptive family and her daughter is from China. Liam came in about halfway through the video and he looks at the video, gets this strange look on his face and asks, "Mama? That Sissy?". I answer "No. That is so and so. Not your Sissy". I wanted to see how he would process the situation.
After a second or two, he grinned big and he said, "Oh! And Me! And Sissy too!"

Again he makes the sign for China on his chest, and he says" She have her Mama?" and I say, "Yes" he says, "Not you?", and I say, "No her own Mama" then he ran off to play.

Ohana

Ohana is the Hawaiian word for family. I first became aware of it when I watched the Disney movie Lilo and Stitch. In the movie, Lilo tells Stitch, that, " Ohana means family and that family means that nobody gets left behind or forgotten". It's a great scene and reading that makes me teary eyed every time because it is a great sentiment for any family but if you are an adoptive family? Wow. It just gets heavier and more important.
And what if you are an adoptive family with a little Stitch of your own who has been working very hard for a little over two years to fit into the family?
What if he tries every night at the dinner table to figure out the meaning of family?
Of Ohana?
And you have watched him struggle? And you have struggled too?
And you have watched a slow transition from and angry little toddler into a little man who is getting it and the pieces are falling into place but because of a severe speech delay you KNOW there are things you are missing?
Ohana.
I think about it alot.
In exactly that way.
I have taked about it before, how at dinner, Liam will sit and look about us all and smile and make the sign for family and say that we are family and name us all and say we will be family for ever.
But there have been some new additions.
Lately he has added in the cat.
And far off relatives. Like MoMo and the Grands and The Brev.
And now he says we will be family for five minutes and he holds up his little chubby fingers and smiles big because in his little mind, five minutes is waaay longer than forever! And we laugh and we say, "Oh yes! Five minutes is for ever longer too!"
But...
Last night,
Ev got snarky, and got up from the table and was flouncing around and grabbed one of Liam's toys and then got, you know, busted, was told to put the toy down, decided to throw it with, a first class attitude... so she was asked to leave the table and "go stand on the wall".
So Liam Looks at us and does his family thing with a funny little smile on his face. But he says, "Not sissy. Sissy Bad. Sissy Not Famm-ee"
And through the Status Migrainosis. Through the pain pills. Through the over eating. Through the over stressed out status that Les and I are both in... I looked at Les and Les looked at me and we were completely like "Holy crap is that what he thinks!"
And I kind of looked at Liam and I said, as calmly as I could manage with my heart jumping in my chest and my stomach flipping, "No, honey. Sissy is still in the family, Even though she made a bad choice and is in trouble. That does NOT MEAN THAT SHE IS NOT FAMILY. We love sissy. She is our sissy. She is always our sissy. For ever. Even if she is bad." "Even if Liam gets in trouble he is still our Liam and in the family - ok?"
And he started to cry.
He crumbled.
And before I could think, I jumped up from the table And I yanked him up and I grabbed him to my chest, I nearly overturned the entire table getting him to me. And  I blubbered things about family and forever and ever. And he kept saying "yes mama"  "yes mama".  And Les was there saying things.
And it was Ohana.
And today Liam has been VERY happy and giddy. Maybe there is a connection.
Maybe another piece of that understanding of longterm family relationships clicked for him. I know that I have been granted a deeper insight into my son's precious little heart and I will not waste it.
If you ever want to know the biggest toll a speech delay can take on an adoptive family it is this. That he can not tell us these things as Evelyn could. How long has this been weighing on his little mind? I can not say. I had to wait and watch. What a terrible burden and fear for a little guy.
You see, when you live two years with no family of your own, that concept of Ohana does not spontaneously grow in your heart and mind, you must find a Mama and a Papa that can help you learn it and it takes much longer for a broken heart to learn it than you would think.
But we don't mind helping him.
He's our Mooosh.
Our Bubber Doo.
Our Lee-UUHM.

Those Bittersweet Moments

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See? We did make it to the beach the other night. If you are friends with me on FB, then you already know this and you have already seen some of these pictures. If you watch the slideshow, you get to see some again and some new ones, and you know why- I am a picture junkie.

I chose Debussy for the music because sometimes when I am playing with my children or I am watching them play, that is the exact music or mood that is echoing in my head and through my heart. Sometimes when the light hits them just so, you can see them as they are, as they were and as they will be all at once and it takes your breath away and wrenches your mother's heart in such a compelling way... You are left bereft and in love and longing for days gone by, wanting this moment to never end and yet? Wanting tomorrow to come rushing in so you can meet the wonderful people you know they will become, and it's all there! Right there! In that one moment. And you are lost like so much foam on the waves. Like fluff on the wind. And for me, the only thing that can help me capture that is that particular song up there and it was playing in my head the whole time they were frolicking on the shore the other evening. Some day, oh some day they will be all grown and gone and that will come before I am ready because it was just yesterday that they were tiny, chubby round things all fumbly and completely dependent on me and look at them now- rock jumping, shore exploring, strong children and it happened in the blink of an eye. Such is the nature of children. To grow at light speed and leave us before we are ready...
I love them in ways that I can not explain. The way they laugh. The way their faces crinkle when they smile. The way they are different and the same. How one will never ever give an inch and one will clumsily stroke your face when you cry. I am amazed at how ferocious and gentle my love for them can be and often times in the very same moment. My love for them is a vast, swirling galaxy of white hot stars and unknown dark matter. It is sweet and light and sometimes scary in it's very bigness. And I know that sometimes when they look at me, they see it and they just walk a bit taller and it does not scare them. My love for them is exactly what they want and need and they will take every ounce and keep on truckin'.

Who's The Boss?

Let us review. I write this blog for myself, as kind of a journal AND I happen to be a full disclosure kind of gal. Meaning that I don't want this blog to make my life look like a shiny happy perfect kind of place, I want to be as real as possible here. I also am not a pity seeker, I write about what is in my life because that is what is in my life at the time.
And what is in my life right now? Status Migrainosis. Today is 52 days of the same headache. 52 days of constant, intense, nauseating, unrelieved pain. Fun times.
I could go into lots of details about one crap Neurologist and the way he made me feel like a toilet bowl and how he didn't treat me and admit me to the hospital because he couldn't because he had lost his privileges to practice there and never told me so because he didn't want to loose the money my visits were bringing him...and how that made me suffer about three more weeks than I had to...I could go on about how I ended up with high blood pressure and a high heart rate and he looked at me and said I needed to see my family doctor for an EKG in one breath and that I should also go home and exercise in the next and that he would see me in two weeks and here is more Dilaudid....
SO- I did see my family doctor and I did get and EKG and I almost got admitted to the hospital that day but I didn't because he decided it was my thyroid that was messing up my heart and put me on a beta blocker and told me if my chest hurt to go to the ER  and he sort of was concerned that my head was still hurting me and he wondered why the Neuro hadn't done anything and he gave me a referral for a place in Philly...
So- I got chest pain and I didn't tell anyone for three days 'cause that's how I roll.
And finally I did and I got admitted and my family doc put in a Neuro consult and I got a new guy and he is awesome and compassionate and can actually practice at the hospital and he has ethics which is cool and all. So he kept me there past the cardiac stuff for some migraine treatment though, sadly because I had been mismanaged and had not been on high enough doses of prophylactics to help the iv vasoconstrictors that he needed to use, he could not bust this out and the headache returned slowly during the week after my discharge (it wasn't entirely gone in my day of discharge). SO -I am at home now taking high doses of steroids and high doses of prophylactics to prepare for another hospitalization to get another round of those vasoconstrictors that will bust this thing out. Hopefully.
I no longer remember what it is like to be me without pain.
I no longer remember what is like to interact with my kids and not fake being copacetic.
I grit my teeth constantly.
I frown alot and squint and Liam always asks me if I am mad. And I try not to do those things.
I try to be as normal as I can be. And you will see some of that here too. It's not always going to be this... And my mom was here for three weeks helping me/us and I should say that and how much we lover her and appreciate that.
If I am half was decent and my meds are kicking we will go to a close by beach with easy access and I will plop down and the kids will romp and I will be in LOTS of pain when we get home and very tired but they will have had a normal evening.
I will sit when I can and do a puzzle with them. Or read to them. Or sit on the yard with them.
But it's not really me. It's just partially me.
And I can not even begin to tell you about the state of my house.
Though I did clean yesterday, with the help of Les. But I overdid it. And he tried to tell me. And so did Ev. But I'm stubborn. And I felt like I was in charge.
And then. Oh then. I was standing and talking to Les in the evening. And I looked up to say something about hanging a map above out chalkboard in the schoolroom... and it was like some bad man walked up and swung a cold ax and hit me in the head. My left eye went totally black for a second. My stomach lurched. I felt the pain down to my toes. I staggered back two or three steps. Fell into the couch curled into a ball and started... I don't know... crying, sobbing. Holding my head and wondering what the fuck just happened. Les brought me some frozen peas for my head and whatever pill I managed to gasp out that I needed and there I was.
And I learned who was boss.
The headache is boss.
Of my whole life right now.
The headache is BOSS.

Evelyn Figures Out Grown-ups

So this morning I was sitting on my bed, simultaneously applying make-up and making appointments for MRI's and MRA's, while the kids were in Liam's room playing Lego's. Now, there was some pretty in depth political maneuvering going on concerning the building of robots...
Things on my end progressed, and I was deep in thought. I was thinking about how I could tell Les that it was really good news I had a shower before 2 pm today but the down side was that in my drug addled state, I forgot to close the shower curtain all of the way and kind of flooded the entire bathroom and that is kind of an issue right now... and maybe could he miss more work on Wednesday for my MRI/MRA so Ev didn't have to sit in the waiting room all by herself and hey when should I take my morning meds and thus schedule my afternoon shutdown and wow my eyes look really bloodshot and geez I need to pluck and is it really bad to have a Reese PB Pumpkin and a Sprite for breakfast because that is all I seem to really want and on and on for a bit when through the haze I get the heated robot debate sort of phase in and I realize I better do something so ......

Mama: Oh. You know Ev? Building a robot might be a bit too much for him right now 'cause he is kind of little still so maybe you could build him one like yours but with different colors.
Ev: Well. That is Kind of what I had just decided and stated exactly two seconds before you said what you said about building him one. I said, "Okay Liam. You are little so I'll build you one today, I guess. But next month you are on your on as far as robots go" and then you said, "Oh. You know Ev? Building a robot might be a bit too much for him right now 'cause he is kind of little still so maybe you could build him one like yours but with different colors."
Mama: Well, honey, I was sitting in here and I was thinking my own thoughts. Sometimes grownups are thinking about a whole bunch of different things that take up a lot of emotions and brain time and they can hear you but they can't quite listen very closely to every little thing that is happening.
Ev: Oh? Is that was the issue is? That explains a lot. Okay then.

Standards of Care

It is amazing to me how quickly the landscape of your life can change. One day, you can be chugging along and you can be you, secure in yourself and all of the things that make you who you are and then something comes along. A sneaky headache say, a that headache begins to rob you of your life, a little bit each day and before you know it, something like 42 days have gone by and you look up and the entire landscape of your life has changed and you are helpless and gasping and fearful and even though you have your family around you, you are alone and you wonder if you will ever be free of this dreaded thing again.

All of the sudden, because, really, in the scheme of things, when you remove that hot poker of pain from you head, 42 days is not long, so, then... All of the sudden, the entire landscape of your life is different. Strange. Where there was light, there is now dark. Mountains are now dark valleys. Your bed is now a prison of boredom and torture. Your feelings become a weird, strange mix of white hot, sharp pain that you feel so acutely while all of the things you long to feel, the good things, seem so far off and fuzzy. Colors fade. The voices of your children fade in and out of your consciousness, you can't quite focus on the stories they tell you but somehow their laughter and silly games cause you physical pain.

And so you make trips to doctors. Doctors that can't quite seem to ever look at you. They can't quite stop writing and checking boxes long enough to see you. I want to scream at them. I want to say. "treat me because this headache is taking me away from my children! They are missing me! I am missing them!! Time is passing as you sit there and leave me here alone with this dragon in my head!!!!"

I am disgusted at the state of modern medicine.  A pill for this. A pill for that. They turn you into the very thing that they despise and they just keep checking the boxes and filing the forms. A good doctor is worth his or her weight in gold. So if you have a doctor that treats you like a person, that looks at you, that listens and responds... a doctor that realizes you are someones mother, someones wife, someones daughter, hold on to that doctor because they are few and far between.

And so now I fight. Not just the thing in my head and in my body that makes me hurt and makes me sick. Not just the Insurance company that loves forms and protocols and ever changing regulations they oh so conveniently forget to tell anyone about. But I also fight the very people that are sworn to help the sick. I go into offices and I tell them about the beast in my head and I wait to see if they even flinch, and if they don't, I am going to move on until I find a doctor that cares. Because my children have lost one mother and as God is my witness, they will not loose this one because some asshole can't do anything but pull out a prescription pad.

So I'm sick. Ongoing headache. 42 days of that shit. Weird heart and blood pressure stuff. I am having to take at least some of the pills the pushers send my way or the pain would debilitate me. At this time, between the pain and the pills, I am such that my Mom has to be here to help us (thanks Mom- a milion thanks and love to you). I am heading off to Philly and off to my Endo ( a good guy) so hopefully he will have an insight.

And what can I say to my husband? About my husband? He is here. He is frightened and tired and just trying not to freak out and he's trying not to punch a doctor and he's trying to be normal for the kids and he's being Les. He amazes me. I love him.

I open up my mouth sometimes to talk and instead self pity falls out. Sorry about that.

Pain

I am not really one to complain.
At least I don't think I am one to comlplain. Maybe those around me have another take on the subject, I'll have to ask around.
But I am going to take a bit of space up here and now and talk a bit about the past few days.
I have been struggling.
Struggling more than I ever have.
I am on day 12 of a constant migraine.
Twelve days.
One trip to the ER.
One trip to the family DR.
Three days lost to just laying in my bed with my head stuffed under blankets, hoping and praying for some sort of relief, any relief.
The pain is in the left side of my head. It is a constant beating reminder that a pain free existence of any amount of time is a God given Blessing.
The pain takes everything away.
It's just you and it.
Your family is far away.
You are far away from your family.
I can not read, it hurts too bad.
I can not watch tv, it hurts too bad.
There is nothing that can distract.
One minute drags on agonizing into the next.
Your hands shake with the effort of keeping your face impassive.
You drag yourself up to the toilet to pee or dry heave and drag yourself back to the bed or the couch (if you are trying to pretend to spend time with your family).
You haul your sorry ass to the car and fulfill you parental duties as best you can, getting your child to gymnastics, hoping that nothing too taxing arises, that just the bare minimum will be required of you.
I can deal with the pain really.
It is this forced absence from my husband and children that I hate and loathe so much. I only have so much time with them before they grow up, every hour I am forced to sit here with my head throbbing in white hot constant pain and making me more and more diminished just kills me. It just eats me up. I hate it.
I avoid the triggers.
I take the meds.
I do all of the things I am supposed to do.
 Yet, here I am. Stuck in this throbbing, aching hell.
Just the pain and me.
Me and the pain.
"Status migrainus", they say and send you home with no idea of how that impacts your little children, how it tears at the fabric of who you are and what makes you tick.
You make the appointments.
You go for the MRI's.
You will try the new meds.
And maybe a few days of no pain come.
But even those days are marred by the worrying if tomorrow you will hurt again. If the pain will carry you off to your soft prison again where you can hear them two rooms away, playing but stopping every once in awhile to ask if Mama is still sick.

These Three

These three kids are three of a kind. Unless you have ever been in the same house or yard with them for an hour or two or an afternoon, you just probably can't get a grasp on the bond that is between them.
 It started with the two oldest ones, The Brevelyn, if you will. They are so close, yes, cousins, not siblings, but... so much more. They need each other in ways that my sister and I, their mothers, can't even quite grasp. There isn't a day that goes by that the two of them aren't talking about the other one. They may not be on the phone with each other every day, but you better believe that they are on each other's minds every day. Every day.
And when Liam came along, yes there were some bumps. Especially the first time Brevin figured out that Ev would not permit even him to treat Liam badly, but overall things smoothed over quickly and the littlest monkey was assimilated rather seamlessly and they are all really terrific playmates.
Mostly, it works out because the two oldest ones do what they want and Liam trails behind them, happily, merrily assuming that he too is playing but really he is just tagging along. For now, it works.
I love to see them playing on hot summer days. Splashing in pools, spraying each other with squirt guns, chasing and tagging, spying and playing involved games of tag and war... all of the games kids invent. Asking for popsicles. Slathered in sunblock all day, bug spray at night. Bumps and bruises. Put to bed with sweaty heads, sticky faces, bruised legs, dirty feet and utterly exhausted.
I am never so happy after tending to their needs after a long summer day of playing and needing things. Even if I do get a bit worn down and grumpy, I am not stupid enough to be blind to the special moments that have been going on right in front of me all day.
Brev was supposed to stay with us for some time this summer, he decided not to. Evelyn and I were CRUSHED. CRUSHED we were, but we understood that it was a long stay and a long way from home for a boy his age so we chose not to let him know just how very sad we were by his decision. But we really would have loved to have had him for awhile. All to ourselves.
Why just think of all the popsicles.

The Most Irritating Little Thank You Note

Just recently we decided to add another day to Evelyn's gymnastic routine. The main reason for doing so is simply that she wanted to, and since she loves it so and we had no real reason to say no, we did. The funny thing about her is, and this is one of the things that I love best about her, is that she got in a flash, that it would be more money and more time and effort on our parts to get her there. She realized it meant her little brother would have to do more waiting and killing time, she realized that it meant a bit more work for her Mama and all without us saying a single word about this to her, that's just how she is, how she has always been. I actually wish she were a bit more blissfully unaware, she would be able to be more care free.
Well, so... I take her up for her first three day week and we get home and she is so happy and full of gymnastic fervor that she creates a little thank you note for me, this is also something she has done from the youngest age. Oh, how she loves to give a good thank you note!
In the note, she drew a daisy and a rose for me. They were beautiful flowers and put in the card because she knows I love those two flowers particularly. Though on her second or third inspection of the note, she noticed that she had forgotten to include briars on the rose. Now this irritated the little perfectionist and we had to have a conversation about it, of course.
So she says to me, "But it's ok Mama because heh heh not EVERY rose has a thorn."
......
And then my brain split into two warring factions. One side remained the almost 40 year old Mama with great taste in music and a desire to look after her child's feelings and the other side? Wehehehellll.....the other side turned back the clock and became the Eighties Baby with big hair, acid wash and a penchant for listening to Poison.
And an epic battle ensued in my brain.
I heard a dull roar.
My vision darkened.
The Eighties Baby actually won! (must've been all that Aqua Net)
and my head, still kind of out of my control, jerkingly looked toward her...
And my mouth opened...
And I sang...
"Every rose has its thorn..."
She turned and looked at me and said "whaaa...?"
And I went on!
"Just like every night has its dawn.."
Now I was in the moment, shameless and uncaring of the damage I may have been doing!
"Just like every cowboy sings his sad, sad song.
 Every rose has its thorn. Yeah it does."
(insert big finish)(there may or may not have been some air guitar with a broom)
She just wandered away vaguely.

That damn song has now been stuck in my head for a day and a half.
I should have been worried about myself.
I don't know if I can survive it again.

Two Years

Liam has been with us for two years now. Sometimes I just can't believe it. And then I look at a picture of when we first got home and I can't quite match up that chubby legged little squawker to the brown legged little gun totin' fire cracker we have now and I realize that nothing but time and family could have made that transformation.
It has been an interesting two years. Just having a child in your life that is growing from the age of 21 months to the age of 3 and a half is momentous enough and full of firsts and wondrous events; but when that child is also entering family life for the first time, when he has moved from one country to another, had major surgeries, gained a sister, moved houses..well you can see it all just gets even more amazing and time seems to go all the faster if you are the poor Mama trying to keep track of it all and hold on a bit longer.

I do know that I have been lucky enough to travel to China to meet not one, but two very particular children. Children who have come into my life and given me the only thing I ever really wanted, the chance to be a Mom. I love my little boy. He is exactly the boy we all needed.

So here's to Liam. The boy that makes me smile, the boy that makes me crazy. My sleep walking, gun toting, swashbuckling, sand digging, bike riding, sister aggravating, morning cuddling charmer.

Chock Full O' Nuts

The Smokewood Gang has come and gone again and we had an excellent time despite the heat. They pull up in the drive and we go instantly from a quiet little Cape life to an ongoing party life of gaming, eating and beach going and it's good. And when they leave within 3 minutes we are left standing in the quiet, looking at each other like we aren't quite enough anymore, like, "Well, what do we do now?!?!" 

But while they are here? 

We live it up. 

It's nice to have your house chock full of nuts!

Whizz! Bang! + Higgs!

Happy Fourth!
We have had so much fun that, apparently, we have broken our children in some way. It is 7 pm and they have both been asleep for at least an hour and a half now! Liam fell asleep in the hallway even! The fact that Ev is asleep at all is astounding- a revelation- that girl hasn't willingly slept while it was light outside since she was 19 months old. Part of the issue is that her birthday celebrations kept us quite busy for awhile and then before we could recover, it was time to celebrate The Fourth.

One of the perks we have as a Coast Guard family is getting to watch fireworks from the beach. If you haven't ever gotten to do this, I highly recommend it!We try to get there with enough time for the kids to play and have a shore side picnic. I bring glow sticks and then we settle in for the show. We were on the beach late into the night, we only came home when the three year old looked at us and made the sign for bed and asked to go home....

Today we stayed at home lounging about, cooking out and reading Harry Potter #3. We had those impromptu naps, some good food and some much needed relaxation.

Les and I also had a few moments of complete geeked out joy when we were reading up on the recent news in Science. It seems that hard working, steely eyed scientists have come across the Higgs boson particle!!! This is amazing news and I knew they would do it, I just thought it would take many more years. This is what you may have been hearing called the "God Particle".  I can not stress what big news this is the in world of Science. Good on you CERN!!!!!!!