Beautiful Surrender

I want to massage my face with a fork.

This is the first thing I said to my husband as I crawled into bed tonight.

Some things I don’t talk about very often (cough *ever* cough)…
I have Lupus.
It is a chronic Auto Immune Disease that I battle with daily. Every second. Every mil-a-second. (Is there such-a-thing?)

Apparently I was born with it, that and a hole in my heart. So when the Dr. was explaining to my very young mother…that her 4 lb. pre-mature baby girl, with blue legs, also has a hole in her heart, and her blood cells are killing themselves off…she was told to “just hold me.” That on the off chance that I survived, I would never be normal…..

BOY WERE THEY RIGHT!

and so my battle began. I was born with my dukes up, a can-do attitude, that at times teeters on the brink of “nobody tell me that I can’t, cuz I will friggn’ prove you wrong every time.
NOTE: This Rock hard  stubbornness has come back to bite me in the-you-know-what at times. ( Like when my O.B. shook his head when I was 18 and told me “No children for you, it would be too high of a risk)
Tsk, Tsk, Tsk….yeah I won that argument…   :0/


ANYwho short re-cap….Lupus, me, stubborn, beating odds/me being totally retarded…literally.

From day one my Immune system was next to nothing,I had a hole in my heart, 4 lbs., severe learning disabilities,traumatic childhood including much abuse, multiple moves and family changes, 10 new schools...
#notgreatodds

and she is making it people, she is.

The one thing,(maybe two things) I have learned in the making of me is not being afraid to be vulnerable, and learning to surrender. Me, yes me the girl that beat, and continues to beat the odds, personally, in my marriage, and even in my adoptions and health...that is the secret to winning this battle...knowing the flaws and weak spots in me, and learning to love them, LISTEN to them, and make them stronger with acceptance and so very much tenderness.

Last weekend I took my oldest baby girl at home for a Birthday swim. It was splendid. I soaked in the sun, I drifted aimlessly in the lazy river (In my next life I am so having one of those surround my house. (Lazy River/ some-might-call-it-a-Moat, Potato/Patoto)
I giggled with her and talked boys as we waited in line for the "Totally Tubular" Slide...

......and I stayed in the sun too long. It isn't that I didn't load on the sun screen, it is that with Lupus, I have extreme sun sensitivity...so since last Saturday, I have developed a blazing, bumpy, nasty full body rash.
It is miserable. I am paying the piper for my day in the sun. This rash is all over my face, behind my ears, in the creases of my eyelids...to say it SUCKS would be an understatement. I want to take sandpaper to my skin.

I am not a super vain person , BUT...looking like this, not being able to wear an ounce of make-up, or lotion..is HARD for me.
In the past, I was able to hole up for a week or two, after the Family Reunions, or whatever I tended to over do at...but this week my kids had major practices for a show they were cast in.
This weekend I had reserved for a Yard Sale so we could fund a new swing set for my kids.

I had no "opt out button".

Me, with my nasty, swollen face, faced 100's of people today and joyfully took there money and thanked them...me with toad skin walked into the grocery for more Ice and Doughnuts for my kids to sell for tomorrow.

...and I talked to my kids about it all of the way. Verbalizing "THIS IS HARD FOR ME, I feel weird about how my face and body look, but I am doing it anyway.Now because my body needs it, I have to cleanse out the toxins and eat very clean food, now Mama is gong to have to take her rest when you all do so Mama's body can heal just like you take your rests for your brains."

and they shared too...what is HARD for them, what they see they need to be gentle with, what they see in them might need to be surrendered, and it was so very, very good....

Love,
Me, the no make-up, bumpy beautiful me.
P.S. Now you, go love on some of those bumpy/beautiful parts in you....

“Hey I’m making friggn’ Lemonade here people!”

So things over here are.not. easy.
and THAT is the understatement of the century.

Some of the things that across the board I have heard when struggling with attachment disorders  is the crap-tastic way holidays and birthday affect our children.
Shame, jealousy, anxiety...with a heaping side of Birthday cake.
Toss in a lil' sabotage, control, destruction, tantrums…yep, it’s a regular party.

In-between Papillion’s birthday. The traumaversary of her leaving our home, Fathers Day, and today, Bug-Bugs birthday..it has been “wicked awesome Yo”.

Mostly wicked.

Bugs birthday last year, ended in Papillions ride to the E.R…so ya know, really trying to squash that memory.
Things we are learning to do different.

The ‘fun’ things that everyone can enjoy, like special meals, we continue to implement.
If an activity is being sabotaged, a sitter or parent will be available to remove said kiddo so revelry is not interrupted, in extreme cases, just the celebrated child will go. I tend to protect special days like a swat team member. Bugs in lieu of gifts is having me take her to a local water park on Saturday, and we went shopping for a new swim suit yesterday.

It has been said "the best gift we can give our children is time", and lets bump that up a notch, the BEST gift we can give out children is time away from crazy,and letting them feel special.

When we give individual gifts on birthdays or "special days" our family, for the time being, we have everyone one, by one, bring the gift in and have a separate gift giving experience with their siblings, or parent. Without the other gifts being exposed or shown off to everyone. This making the gift giving being what it should be about, the giver and the receiver, and those that do not want to participate, don't have to. There have been some very special moments because of this new tradition.

Implementing this seems to limit excessive anxiety, resentment and anger that someone else is having a special day. As well as prevents inventory being taken of gifts, and plans being made of destruction or disappearing acts.

  Which is a VERY common thing 'round here.

Today, because big feelings are flying around here like a hive of freaking tracker-jackers we danced all.day.long. Moving in and out of behaviors instead of feeding them.

This morning when I realized a hand wash only shirt that had been washed and was hanging to dry had a new lovely little (massive) yellow stain (that aint no Lemonade) I called Cookie in and asked him to wash it, “I didn’t pee on your favorite shirt!!!!”

“Not saying you did sweetheart, but gosh I could use some help and since we are re-filling up the Laundry sink, lets add 11 other things that ‘can’ be hand washed and dried.”

Wha-lah, double clean shirt, bra’s, leotards, swim suits…and mommy didn’t loose her $#*@,

Lemonade.

My favy-fav today, the windows that were spit on in a rage of , whom got the most peanut-butter syrup….

Yup, you guessed it, just so all the windows matched …all the windows in the back got washed….

Lemonade.

I found a new bottle of Pomegranate body wash, opened and dumped in my bath tub. There stood dude, with a 200-watt grin, “I did that.”

Punk .

Instead of losing it, yelling and sending him to his room, I squealed “EXCELLENT IDEA! Mommy did need a bubble bath, lets get my favorite oils and add them in too! Want to join me in my tub?”

A very grumpy little boy answered “NO STUPID HEAD.”

So he took a nap, and I tucked him in lovingly…and then I took a luxurious bath.

Wha-lah Friggn’ Lemonade !

Sometimes I get sick of Lemonade, but the thing is…keeping that glass half full of something, is better than nothing….right?!?

Right?!?

"Is it always going to hurt this much?"

I think we all wonder that sometimes.
Sometimes I think the answer is "yes, it is always going to ache, hurt, feel raw, and pulse with new pain with each breath taken"...but then time does her thing...

I wish she would get on with it, hurry it up, get it over with (time I mean), me, I am not a big fan of hurt, mourning, pain and loss. In fact I hate all of it, I have more important things to do with my energy and with my time. Ironically, I have learned if I don't give the pain, the loss, the sadness their time, they stick around longer.

Dang-nabit they do.

Today is my oldest childs birthday. Papillion. She is not with us. I didn't get to make her breakfast, no cake was baked, no presents wrapped. My heart physically hurts today. Fortunately I do have the gentle mercy of Bugs having both a matinee and show this evening that I am in charge of concessions for, to keep my hands and body busy...

At this point I should be a champion at loss. I mean, if anyone should be 'good' at it, I should...but no matter my veteran experience, at losing best friends,a serious boy friend, and my very own children to death and miscarriage....losing a live child, that is still living and breathing is a constant barrage on the heart. THERE ARE NO WORDS FOR THIS KIND OF LOSS. There are no cards made by Hallmark, no ceremony, and most of all very little understanding for the loss of someone not mentally healthy enough to live inside your home. And still there has yet for me to never have felt something as deep and lasting, with no closure, and still constant possibility of fear and pain...this kind of loss is endured everyday..

I spoke with her today. Wishing her "Happy Birthday" as her voice broke on the phone, I told her I loved her and was so grateful for this day that brought her into this world. She wouldn't give me an address to send her anything, but via speaker phone she spoke with each one of her siblings, tearfully saying she loved them and missed them.

In three days we will come to the one year anniversary since the last moments she was in our home.
The memory is thick. I think we all feel the weight, yet as I look around between today, and those days and months following Papillion no longer being safe enough to be in our home, I know time has indeed done what she needs to do.

A year later the rawness has gone. The ache beats steadily with my own heart beat, I doubt that will ever go...but today I laughed out loud, today I hugged my other children, with out holding back a piece of myself. I didn't have to mentally talk myself out of bed and through my days like I did those first weeks.
Today I told her I loved her, and meant it, missed her, but was able to hang up the phone and move on in my day.

So I guess to answer that question, yeah, my knees always ache when it rains, and whenever I see a butterfly, I miss her....

"It's O.K. to say you hate her...."

"It's even O.K. if you mean that right now with all of your heart....in fact shout it, shout that you hate her, and you are mad, tell me how you are feeling, and no for goodness sakes, you do NOT have to be nice about it."


and Bugs and Peanut butter stood there, sad faces about to break into wicked grins....thinking "is Mom for real?"

and I am.

Sometimes I get so wrapped up in theraputic crap...I have to wear the Big Girl panties...I forget that my other healthier kids are NOT required to do so. Yes, I coach them on how not to allow their said brothers and sisters to get a rise out of them...or said children would be pummeled regularly. But, they much like their traumatized siblings are victims also to the crazy. They witness it too. They hear the tantrums, see an exhausted Mommy miss out on fun while calmly (O.K. grumpy and resenting this $#!*  half the time) help a dis-regulated child get regulated.
They too wait in the car, until it is safe to drive again, they too miss out on things occasionally when brother or sisters are not capable of coping with a situation.

It sucks. worse, is when I see them swallow that bitter pill because they are "expected" to be "the good kid"...and put up with the Bull-honkey.

HECK NO!

Yes, I reward, I 'try' to make up, or do do-overs when things and opportunities have been damaged for them ....but some of this stuff can NOT be replaced. Nor can what they are learning, which I am proud of, the empathy , less judgement and patience all of my children are learning are lessons heavily paid, but ones I am grateful for. Still I really pisses the ever-livin'-shkagouskeys out of me when I see them being affected by my other childrens illness and disorders. And my goodness they are ALLOWED to have feelings about it!!!

Heck I know I do! (every blink'n second of every freaking day)

So.

What I want you to know, blog-reader-good-budy-O'-mine...I't's O.K.

It's O.K. whether it is YOU, your other kids, your spouse, life partner, the friend, or family member that is missing spending time with you...IT IS O.K. to feel angry/pissed/lonely/short-sticked... IT IS EVEN O.K. for just a little moment to HATE how HARD and SUCKY being around a mentally sick person is.


Then when you are ready, bring the kindness back in.
Even if the kindness is, feeding them, taking care of basic needs, providing a safe place, food to eat, not allowing them to be harmed or cause harm. As my incredible friend Laura once reminded me, THAT is loving them too.That is loving them in ways no one else did, could or would....and THAT means YOU are a rock star, your kids and spouse are ROCK STARS....andy one willing to "do life" with you...that's it, ROCK STARS.

Sooo just so you know....


and when you, or 'they' need too...
"It's O.K. to say you hate her....""It's even O.K. if you mean that right now with all of your heart....in fact shout it, shout that you hate her, and you are mad, tell me how you are feeling, and no for goodness sakes, you do NOT have to be nice about it."

and then you know, when you are ready, get back on that horse little darlin'.