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.