Why am I here? And, what have I learned?

The Hawaiian word ahonui is commonly translated as "patience." However, that translation into English can be very, very misleading, because, as embodied in the word "Ahonui", it doesn't carry quite the same meaning.

Generally, when we talk about patience in English, we mean the ability to suffer hardship, or discomfort, or pain, without complaint. There is a sense of inner strength or courage about it, but it's essentially a passive concept. Something bad is happening to you, but you put up with it bravely for as long as it takes.

"Ahonui" is the word we are using for the last letter of Aloha, to give us a deeper understanding of love. It means "patience." And, it is also the word for "perseverance." It is not the patience of waiting out a storm. It is the perseverance of moving through a storm to your destination. It is not waiting to get healed. It is using everything you know and doing everything you can to make the healing happen. "Ahonui" can also be translated as "many breaths," the act of moving toward something you want for as many breaths as it takes.

“The Healing Power of Patience”

                                                                  Serge Kahili King                                                                                   

I’m sitting on a rustic deck in the jungle of Hana, Maui surrounded by people who love and care for me, they are my Farm-ily. I came to work on a farm in Hana on May 23, 2015. I had no expectations coming here, all I knew was that Cory wanted me to come here. I couldn’t explain why here, why this farm, but it was so strong that I just listened to him and did everything I could to get here

.

My first couple weeks here were tough, and I constantly found myself asking ‘why am I here Cory? What am I supposed to be doing?’. I was immediately eaten alive by mosquitos. Now I’m a born and raised L.A. girl we don’t have too many mosquitos, so when I say that I had a strong reaction to mosquito bites I mean that each bite would turn into a swollen blister and bruise. I had these bites covering my entire body that it hurt having clothes on. On top of my bites I also discovered I am allergic to papaya! (Which is dripping from every tree here). I broke out in hives and found myself in the local health center for steroids to calm down my reaction and crying to the kindest man on the farm who drove me to the center. I’m sure I looked and sounded like a wreck, but besides my farm dads here nobody knew my story of why I came here. Todd was the man who drove me to the health center, who waited 2 hours for me there, and who I told my story to and cried in his car. When I finished crying he looked at me with his kind eyes and a look of understanding and said “Trust me. It will get better”. In that moment I instantly let go and believed that yes it will get better, at the time my body was physically suffering from my new environment, but as I look back to that day two month ago I know what he said had further meaning

I knew I could go home whenever I wanted. My family and friends were supporting me from L.A., and as uncomfortable as I was when I first got here I never once felt like going home. Maybe it’s the discipline and determination in me, but I couldn’t give up and turn my back because whenever I looked up at the sky or out into the piercing blue waters I knew I needed to stay. The thought of turning my back on this opportunity was like turning my back and Cory and I couldn’t do it to myself or him. So I stayed! I’ve been living on Hana Farms for a little over two months and I want to share everything you!

I’ve made some great relationships here, with my communal farm-ily as well as in the community. Making friends...isn’t that funny? Something we learn as a child and sort of stop doing as we grow older, but these friends I’ve made here have that same childlike friendship feeling. These friends I’ve made aren’t on the surface acquaintances we get caught up with on the mainland. No, these are my brothers and sisters, my mothers and fathers, my aunts and uncles. We live, eat, play, support, hug, cry, fight, and drink together as a family. So, who’s on the farm? Here we go…. My farm dads are Paul and Marty (a fantastic gay couple, Marty is the brains and Paul works the land. Did I mention Paul has a British accent?!), Todd and Carly (the sweetest loving couple I’ve ever witnessed. Ok Todd is 34 and Carly is 22 and they met while working at Whole Foods, BUT age doesn’t matter when love looks like that.), Lindsey and Justis (I call them mom and dad, in fact in stores when I’m separated from Lindsey I literally yell “moooommmm” like a child. They were my neighbors when we lived in "tent town" and since night one here they have taken me under their wing, looked out for me, and included me in everything.), Liz (Shes’s 29 and the older sister I never had. Her time here ended and she’s gone back to Florida, but she was so fun to laugh with, say silly jokes only we get over and over, and dance and sing rap songs with. I miss her, but I know I will see her again), Tracy (He’s 29 and our contractor on the farm for all our projects. A tall lanky guy from Colorado who walked with me at 4:30am in the dark in the middle of the Hana Highway so that we could do yoga as the sun rose over the ocean on a black sand beach), Kari and Josh (Kari manages the farm hours and runs the pizza show on the weekends and Josh is the hardest worker I’ve met who can do anything including shotgun and beer in 3seconds! I kid you not, 3 seconds, I made him do it 3 times haha), lastly we have Alan (Alan has lived on the farm the longest. He runs the pizza show with Kari and also goes on ‘the run’ once a week to get our supplemental food and supplies for the farm. He drives the van to the other side which takes 2+ hours does the shopping then drives back. He’s gone about 10 hours just to grocery shop, can you imagine?). Now for my local crew. My favorite and only Hawaiian princess Ke’ala, (The most loving and nurturing woman in Hana. She invited me openly to a family party my first week here and introduced me like a sister to her friends and family. She has taken me to brunch and secret local only waterfalls. She is simply an amazing woman with two adorable kids Isaac and Emma who call me ‘Auntie’! Which is what you call someone older than you ‘auntie’ or ‘uncle’ as a sign of respect), Nate and Nicki (Nate is originally born and raised in Hana, and I kid you not is over 7feet tall but somehow I never feel short standing next to him and Nicki originally from Palm Springs and has her own jewelry business she has always included me at every social event.) There are so many men and women that make this a great safe community of 1200, no one is in a rush and everyone waves to everyone on the street. Small town doesn’t define living in Hana, but family does.

My Farm-ily

Lindsey and Justis

Liz, Me, and Lindsey

Me, Tracy, and Gavin

Me and Ke'ala

Me, Ke'ala, and Lindsey

Since I’ve been here I’ve learned a lot. I can whisk butter and sugar for an hour to make yummy toffee, I can flip compost piles as big as a Smart Car in the pouring rain like nobody’s business, I can bake 200+ loaves of banana bread in a couple hours, I can replant Hawaiian pepper trees, weed garden beds, make potting soil, propagate plants, kill weeds with cardboard,  and rip can grass trees out of the ground (which feels like fiber glass). Let’s get to the fun stuff now. I can smack a mosquito between my hands in midair, casually brush a fat flying cockroach out of my hair or food, play cribbage, open a beer with ANYTHING (even another beer), hitchhike, pop a squat ANYWHERE, make crusty delicious bread, say yes to every adventure, technology is fun but not have service and being disconnected is more fun, pick up dead rats and chuck them in the jungle at 5am, use a machete, use a sickle, being comfortable in my skin (weather its topless on a nude beach or not looking in a mirror for weeks. We are all so beautiful naturally.) And I've learned that people are inherently good and conversations can open so many doors you didn’t know were there.

I’ve had so many adventures since being here. I’ve explored by myself as well as with new friends. I’ve jumped into an ice cold cave pool, hiked up to countless waterfalls, jumped off big rocks in the ocean and ponds, ridden in the back of a truck over 2 hours to get to the other side, watched the sunrise 10,000 feet above Haleakala mountain, done yoga in the pouring rain on the beach as the sun rose over the ocean, hitched to Paia and almost didn’t get a hitch back to the farm (in fact we walked along the windy blind turned Hana Highway for a good hour), and skinny dipped in the ocean with my farm-ily.

Top of Haleakala sunrise view

I still have a month left on the farm (or longer if I wish to stay). But I’ve already planned a trip to Kauai with my best friend who is meeting me there from L.A. I’m ready for more adventures, lessons, and growing and developing myself.  I know I have a lot of healing left to do, but days don’t seem as hard to take on anymore, in fact most days fly by. I talk to Cory often since I’ve been here and maybe it’s because I feel closer to him here or maybe it’s the point I’ve reached in my healing, whatever the case may be I feel that I am exactly where I am supposed to be. I’ve meditated a lot while I’ve been here and while I don’t know my next steps exactly my future is becoming a little clearer. 

The Other Man-A Love Story- Post by Bill

 I know it's been a while since I've written, just busy with life and work but I've been meaning to write for a while and what I wrote below is straight from my heart, so here it goes.
 Every father dreads the day their daughter will bring home "the other man".  Having two daughters of my own I knew I'd have to go through it, well that day finally happened about 8 years ago with my oldest daughter Emily who is 24 now.  I can still remember when my wife told me "honey Emily is bringing some friends over for dinner" when they showed up immediately I knew what this "friend" was all about, I mean hey I'm a guy too I could see right through him.  His name was Cory and soaking wet he was probably about 100 pounds I thought "Hmm I could cross check this kid right into nowhere and we'd be done!" but he was very polite and I can remember the sparkle in his eyes, it was Emily, one of her girl friends (who Cory was "really" after..yea right) Aimee, Sophie and me.  As we ate I watched him like a hawk but something about him just seemed right, I know he was there to take my baby away but somehow it felt ok, I can't explain why but maybe it was the way he looked at her? The same way I imagined I looked at Aimee when we first met.  He treated her kindly and showed us respect and the sound of his laughter was genuine and immediately contagious, yea you can say I pretty much liked him from the start.  After dinner Emily proclaimed "no dad we are just friends" LOL I told her (and I'm a true believer of this) men and women or in this case boys and girls can NOT be friends.  This did go over so well as you can imagine but guess what? Not too long after that Aimee told me that Emily had confided in her "mom you know that boy Cory? well we aren't just friends anymore" AAAHAA! See a father always knows! As the years went on Cory became part of our family, we had nick names for him of which my favorite was "Hipster Doofus" because of course I came up with it! He went on family vacations with us and even at times when they had their differences or would "break up" somehow he would always still be around? In fact one time when we took a small trip to Palm Springs (the Ozzie's LOVE Palm Springs) I remember walking up and having my coffee in the living room of our hotel room and seeing him walk by and causally say "good morning Bill"...I went in our room and asked "when did Cory get here?" Of course he just drove out on his own and met us there, of course you say I should have been angry but looking back I never really did get angry with him maybe it's because we were so much alike, growing up alone with no family and being on our own as soon as we hit that 18 mark, neither one of us able to finish college but always able to find good steady work, secretly I was rooting for him as the "underdog" and thinking that with Emily by his side he could do anything he set his mind to.  Sure there were ups and downs, fights between him and Emily but somehow  they  always found each other, loved each other and took care of each other.  Cory even lived with us for a few years not having anywhere else to turn and of course Aimee took him in, we took him in like our own, and he was, he was just like the son we never had. He was kind to Sophie and treated her just like a little sister, if anyone in my family would call for help he'd be the first one to show up and would never ask what's in it for him, that's just who Cory was. He would show up to my games and make himself at home in the Locker room with the boys and pass out beers..that's who Cory was everyone he met immediately liked him, like me he had "Kavorka".

There are certain sounds, certain phrases we remember going through life, moments we embed in our minds always there at our beck and call to remember, when Aimee said "I do" the day we got married, the sound my children made when they were born, those are moments forever embedded in my mind that when I want to remember them I can pull them out of a file in my brain, sadly one of those sounds or moments embedded in my mind will be the morning of January 23rd when at roughly 4:30 am I heard the screams, moans and uncontrollable sobbing coming from Emily because sadly that night Cory was in a fatal motorcycle accident and Emily had just found out.  It's one of those moments I don't want to remember believe me, but it's something I still hear almost everyday and replay in my mind.  I just had lunch with him downtown a few weeks before, he texted me and just "wanted to have lunch" he talked me into having a beer with him, we talked, we laughed, he was so happy, so content with life, looking back was he telling me goodbye? He told me how he loved Emily even though they were going through a rough patch again, he told me about work, about his new bike, how he liked to go fast.  I told him "Cory you have to respect that bike it's very powerful" but in true Cory fashion he just laughed and said " I know but I LOVE to go fast".  To say our family was complete devastated by this is putting it mildly, even while writing this on the bus on my way home from work tears flowed down my face and I didn't care who saw them or what they thought.  The business man sitting besides me saw this and probably thought I was nuts, of course this is LA so he didn't ask if I was ok, he just went on as if he'd seen nothing.
 Just like that moment I'll never forget, the sounds of sorrow I'll never be able to erase from my mind I will also never forget Cory, who was like a son to us, I'll never forget those eyes, that contagious laugh and that huge heart he had, even though I'm not really religious, part of me likes to think that Cory is finally back together with his mom, he's looking down on us everyday with those sparkly eyes and that big smile, I hope they God gave him big powerful wings because you know, he loved to go fast.  Cory I love you and will miss you greatly you'll always have a special place in my heart and should "that other man" ever show up again, he'll have some pretty dam big shoes to fill.

H.U.G-Hold up and get permission-Post by Aimee

A hug is defined as a near international form of physical intimacy in which two people put their arms around the neck, back, or waist of one another and hold each other closely. 
Let's just take one moment to look at the words physical intimacy... Physical, in this case meaning, body and intimacy meaning belonging together.  This is all fine. I am a fan of hugging; I hug my husband, my kids, my family and close friends. What I am not a huge fan of is hugging someone upon the initial meeting. When did this become the norm? I understand handshaking carries a certain amount of germ passing on the other hand it also creates a certain amount of space between to human bodies.  Some people, Sophie for one, are not comfortable with physical touch.
When Emily was a little girl she would sit on my lap and we would read books, she loved to lay down next to me on the sofa during quiet time or snuggle between her dad and I. Sophie was a totally different story. Sometimes, with much reluctance, she would sit beside me-never on my lap. She never wanted to lay on the sofa preferring to enjoy quiet time in her own bed and forget about her squeezing in with Bill and I. My first thought was thank goodness, she is not one of those clingy kids! Then I became sad and longed for the days of cuddling with my little girl.  I stopped taking it personally when I noticed she didn't want anyone to touch her. She rarely even wanted anyone to hold her hand. In the world of ASD this isn't strange at all and our family adjusted. Her Auntie switched to high fives, I learned to ask before kissing her goodnight or holding her hand and her grandma and her began bumping elbows as a sign of affection. We were good. The family got the message and we saw clear sailing ahead.
As often happens a storm began to brew. Somewhere out in the world the hug became end all be all of greeting anyone and everyone. Soon people we just met were swooping in for the hug instead of saying, nice to meet you. I found a NY Times article dating back to 2009 exploring this same question and another as recently as 2014 explaining why the Asian culture is hesitant to embrace this salutation.
Overall we are a friendly family and know many people from all sorts of areas of life.  I am very active in a women's organization and see several of these ladies a few times a week. Some of us are very friendly with each other and grown to be close friends. They are nice women and there are a lot of them I hug. When they meet my family their natural instinct is to feel close to them too and want to hug them. As they approach Sophie with wide open arms I see her face change from indifferent to worry. Most times I can step in between and intercept the hug but once in a while I just cant make it.  My very good and very perceptive friend 'MB" sensed Sophie's discomfort really quickly and she began the fist bump with Sophie. Not only did she start fist bumping she asks first every single time. This is huge in Sophie's eyes and she and "MB" have become fast friends.
This morning as we were waiting for the school bus and chatting I asked Sophie how she felt about people who want to hug her. She promptly gave me two thumbs down so I decided to ask her what she could do when a encompassing clasp was heading her way. She immediately held up her hand in a stop sign and said, no thank you! Then I helped her with some other words to use such as, How about a fist bump and I don't like hugs!
I have to say that sometimes I agree with her. There are first encounters where I would like to hold up a hand and say, no, thank you. We just met. How about a fist bump?

Two Business Days- My struggle with IHSS Post by Aimee

The state of California has a program called In Home Support Services (IHSS). This is a program to help people with disabilities remain in their own home or to help pay for out of home care. We are eligible for this due to Sophie's diagnosis.
Like so many state funded programs the paperwork is very overwhelming, at times it is exhausting. The maze to complete the initial paperwork required me to think positive, read, read, read, give myself daily pep talks and ask several friends for help. Eighteen months ago I completed everything including the half day training required for me to be Sophie's care provider.  Things have been going along swimmingly, well that is until the last week of December.
Bill is a fantastic husband. He enjoys sweeping, vacuuming and "tidying up". It's that last one that gets us all in trouble. I am the type of worker who enjoys lists and small to do piles. As I work here at home I lay things out that I need to take care of or that require some kind attention. This system has worked fine for us for over twenty years, I mean it did work except for this calamitous day in December.
On Sunday December 28, 2014 I was getting all my paperwork in order for the coming week when I noticed my new time sheet from IHSS was missing. I began to move things around looking for it, Sophie's homework, a note pad, a party invitation......nothing. My search became more frenzied and I moved to my desk to look...nothing. Please understand I am in no way now or was I then accusing Bill of tossing this most important piece of paper but he does have a reputation for "cleaning up". The discussion that followed is a whole different blog suffice it to say no one has claimed responsibility for touching the time sheet.
All right I'll just call in the morning and request a new one, this must have happened to other people.
Monday December 29 I begin calling at 9:00am. I placed 65 calls all with no answer or a machine telling me how important my call is and to please hold the line. I am patient I can make phone calls I will just try again in the morning.
Tuesday December 30 I call at 9am to hear the same message as the day before. 9:10am I call again and a live person answers the phone! I explain to the woman that my time card has been misplaced and request a new one. She informs me that I must call a Ms Jones* and proceeds to give me her number. I am feeling a bit smug now as I think, Piece of cake one more call and I am done. I dial Ms Jones number only to be greeted by her voice mail. Let me explain this voice mail message of hers; It begins with a sound as if the phone is being thrown onto the floor then comes her voice. To say she speaks slowly is an understatement. Read this as slow as you can to get the idea, "hello this is Ms Jones. I cannot take your call now.....but if you leave me a message I will call you back in two business days....if I do not call you back in two business days please call my supervisor Ms Smith* at three.....one....oh....five....five...five...six....two...four...nine........." So I leave a message with my name, my child's name, my provider number, my case number, my phone number and a request for a replacement time card.
January 2, 2015 I have not received my return call and it has been more than two business days so I call Ms Jones again, wait through the long message and once again leave my information. There was a holiday during the week and I don't want her to get into trouble so I decide not to call Ms Smith. I hang up thinking I am sure she will call this afternoon.
January 6, 2015 Still no call back. Once again I call Ms Jones, the message now seems endless. I feel as if I have been on the phone for an hour before I hear the beep- again I leave my message with a urging in my voice to call back.  I now decide that it is time to call her supervisor Ms Smith, no more playing nice she must learn to return calls. I dial Ms Smith her phone rings and rings and rings. There is no answer and no message. I call back. This time there is a message, she too is unable to answer the phone but assures me that she will return my call in two business days, if she fails to return my call I am instructed to call HER supervisor Ms Johnson.  I jot the number down sure I won't need it.
January 9 No calls! None! I begin again, first Ms Jones and her drawn-out message. I am not holding back today next I dial Ms Smith leave her another message remaindering her that this is my second call to her and I have yet to hear back from Ms Jones even though more than two business days have passed. Now for the big guns Ms Johnson. I will be sweet and polite, assure her that the other ladies are probably just busy and while I don't want to be a pest I really do need my replacement time card. I take a deep breath and her phone just rings. It rings for almost five straight minutes before a voice comes on to tell me her mailbox is full. FULL?!?!?!?!? No chance to leave my message, no promise of a call in two business days nothing!
January 13 Desperate I call my friend, another special needs mom, who also receives IHSS and ask her what to do. "Don't go there'! she yells, "I lost my card once and went there and they won't even look at you. Here call these two numbers" I call the two numbers she has given me. The first one is out for an undetermined amount of time but feel free to leave a message, I leave a message. The second has a message proclaiming her the head of IHSS time sheets (yes) she also asks me to leave a message with all my information and numbers etcetera and she will call me back.....in two business days.  I am beginning to lose it a little.
January 16 I make the rounds of calls again. Now my voice is sad and hope is fading that I will receive a call in two business days.
January 20 No calls made or received
January 26 I begin my calls at 9am. When I get to the beep on Ms Jones' voice mail I beg, BEG her to call me back. I actually say, "I am BEGGING you to call me back!!!! If you can not help me please tell me who can"
January 28 Emily tells me to call my union. Yep, us long term care providers have a union. I call. The lovely woman who promptly answers her phone tells me to call...a Ms Jones. I quickly explain that I have been calling her, her supervisor, her supervisors supervisor. She puts me on hold.  When she calls back she advises me to call my social worker. I look for his number and call him. I get his voice mail.....He will return my call in two business days.
January 29 This was a gut wrenching very hard day for me and the family. We attended  a memorial for a young man we all loved very much. Feelings and tensions were running high by the time we returned home. I was sobbing. Bill was crying. Emily was crying. We began to argue among ourselves, My emotions boil over and I cry, body shaking sobs when my phone rings I pick it up and am about to hit the silence button when I notice the number.....the very familiar looking number. This is my chance! My one and only chance! Pull it together I tell myself. I go from crying to a very clear, very professional, "Hello" in a half a second.  It's my social worker!!!!! Replacement time cards he asks? Sure, I'll send them right out!  He called back and in only one business day!!!!

A Special Tribute about Love and Family- Post by Aimee

 

"Family isn't always blood. It's the people in your life who want you in theirs.

The ones you accept for who they are. The ones you would do anything to see smile,

and who you love no matter what"

Unknown

 

One day when Emily was sixteen years old she brought a friend home for dinner. I was setting the table when in walked a semi awkward teenage boy with green eyes and a charming smile. This is my friend, Cory. She said. After dinner Bill drove him home and I asked if he liked her, was he her boyfriend. No, mom! We are just friends. I few days later Emily pulls me aside and says, mom, remember when you asked me if Cory liked me?  Well he does and I like him. Just like that in that very instant Cory became a member of our family. He became a permanent fixture on our sofa, at our dinner table and eventually on vacations and holidays. We all fell in love with him. He made us laugh, He was wonderful with Sophie, He helped around the house and sometimes he made us cry.

They were kids, I expected them to date for a year or so but this was a deep and lasting love and the longer Emily and Cory were together the more Bill and I became to regard him as another one of our children.

He had suffered loss in his short life and would often come to me for 'mommy advice'. He and Emily were my 'Frog and Toad' as I called them. I picked him up after he was fired from a job, I made him soup when he was sick and we told him we believed in him.

Before we knew it Cory was at every family birthday, all the holidays and came on vacation with us several times. Bill would walk out to the pool in Palm Springs and come back to the room saying, When did Cory get here?

One year in Palm Springs my mom had this idea to buy a Panini Press. Now my mom gets the name of everything mixed up and soon there were shouts of, who wants a Ka-ba-she?!?

Cory and my mom began making sandwiches for everyone, Ham and Cheese, Turkey and Swiss, Three Cheese. Day after day Ka-ba-she's were flying out of the kitchen until one of the last days when there was no more bread, or lunch meat....Then Cory started making Ka-ba-shes from bagels filled with guacamole and hot dogs, not good. It was on this same trip that we learned a little tid bit about our boy, he was terrified of cotton balls. He tried to convince us that he wasn't scared but actually allergic to cotton balls touching his skin. That was all Emily had to hear she was off and running chasing him all over with cotton balls as he yelled and screamed. My mom, sister, Cory and Emily were laughing hysterically and decided to call me into the room stating that there was an emergency. I walked in to find the three of them laughing at Cory crouching in the corner to get away from the cotton ball. I asked what was going on and Cory says, I am allergic to cotton...look hives!!! Trying to hold back a laugh all I could reply was, Oh honey, no that's not possible.

A couple of years ago Cory was jumped on his way home from the beach. He was stabbed in the arm and hit over the head. He made it to a friends house and called for help. Emily was up at school at the time and called us to help him. Early the next morning after he had been released from the E.R. I went to pick him up. I brought him home and put him in our bed. When Bill got home from work and started into the bedroom I told him to be quite because our boy was sleeping in the bed. The look on Bill's face was priceless. He was one of our kids and we wanted to take care of him.

Frog and Toad had ups and downs, they are young it's to be expected, but no matter what they always found their way back to each other. Most of the time I wasn't aware of them seeing each other during their times apart but I always kept in touch with Cory and he would tell me. We checked in with each other, he and I, and I always told him to be a good guy, make good choices and that I loved him.

Cory was in a fatal motorcycle accident three weeks ago and I still can't believe I'll never see him sitting on my couch again. I'll never see that mischievous grin again or see him run screaming from a cotton ball. Emily is heartbroken and Sophie just keeps saying, he was my friend.

No parent is ever prepared to lose a child. It goes against all we learn is natural but the loss of a child in a family of choice puts me in a type of no man's land. Am I mourning too  much? Too little? Do I have the right to feel sad and to feel this sense of loss? I am a mother who thankfully still  has her children but has lost one all the same.

I love you Cory and I am so grateful and lucky to have had you in my life and family for the past eight years.



We've Got Another Mystery Here, Where's Nancy Drew?-Post by Aimee

Yesterday was a lazy gray Sunday. The kind of day that begs you to find a cozy blanket and snuggle down with an old black and white not caring if you doze off midway through. That's just what we did, after lunch and running errands we each found a little space to nestle into. Bill ventured out in the late afternoon to pick up dog food and decided to grab a couple frozen pizzas, an easy day calls for an easy dinner.

By 7pm dinner was eaten and cleaned up. Bill, Sophie and I sat together in the living room, we watching tv she listening to music.

Suddenly she looked up and moaned, 'I'm dizzy' she yelled! 'Everything is blurry' take a deep breathe I calmly said what's blurry? The TV, you everything!!! She then said she was very dizzy! That things were going side to side not spinning but moving. Her eyes began to ping pong back and forth. She stood up, then quickly sat back down. 'Why is this happening again?' She wailed. Bill had her come sit between us and I kept asking her to take slow deep breaths- she started to squeeze her eyes shut tightly, a few tears escaped between the lids. We gave her water, a cool cloth on her head and just when we thought she was going to be fine she started to gag and cough, saying she couldn't breathe, screaming, crying and yelling that she was dizzy. This went on for about 45 minutes. We turned off lights, we turned other lights on, we offered water- she kept missing the table as when she wanted to set it down. We gave her a heavy blanket then opened the door. She liked the air and hated the light so I took her outside and walked up and down the street with her. Finally we seemed to be over the worst part. A short time later she wanted to go to bed. I put a tiny bit of lavender oil on her tummy and rubbed it around and around. Placed a weighted blanket on her, turned the bedside lamp on and put Frozen on very softly. Her eyelids were heavy as I left the room. An hour later I went back in to turn the tv off and her eyes flew open I left again. Emily came home a couple hours later and went to check on her she quickly opened her eyes as soon as she stepped into the room. It felt like she came into our room every hour to ask if it was morning, to ask for water and once to ask for a cupcake. At 6am she again said she was dizzy and asked me to lay down beside her in her bed. As soon as I laid down she started to talk- speaking rapidly and non stop. She jumped up and got dressed and was moving all over the place. She insisted on going to school since Monday is music day, her favorite!

After she left and after coffee I began to call her 'team', the pediatrician, her  therapist, the school psychologist and  her psychiatrist leaving messages explaining this latest episode- she had a similar one last month.

The pediatrician called back quickly advising me to check with the psychiatrist. The school psychologist said she didn't know what it was but didn't think it was a panic attack. Her therapist promised to look at the video I sent and get back to me and the psychiatrist has not yet called back.

Bill and I feel we are in that same horrible spot we were in four years ago before her diagnosis. All the professionals just telling us 'she is very complicated' ' this is extremely unusual' in other words we feel lost. All I want to do is help her. Take away whatever is causing her this fear and stop these episodes but I have no answers and the people who are supposed to help have no information. 

We are All Mad Here-My Life in Wonderland

“But I don’t want to go among mad people," Alice remarked.
"Oh, you can’t help that," said the Cat: "we’re all mad here. I’m mad. You’re mad."
"How do you know I’m mad?" said Alice.
"You must be," said the Cat, "or you wouldn’t have come here.”
― Lewis Carroll, Alice in Wonderland    
Sometimes I wake up feeling like Alice in her Wonderland. I have gone to sleep feeling just like myself and in the morning I feel as tiny as Alice after she drank from the bottle labeled 'drink me'. So small that I can barely see through the window into the light of the day. On days such as this even the act of getting dressed seems to huge an undertaking. As dawn breaks Sophie and her demands, appointments, needs and quirks tower over me like Mount Everest. 
There are other days when I open my eyes to find I  feel like my head could hit the ceiling as Alice's did after she consumed the 'Eat me' cake. I get up ready and able to take on anything. Sophie has three appointments that day, no problem. She is verbally stimming, chirping and repeating- I got this. I can handle the laundry, make dinner and still find time to sit down for a cup of coffee.
This feeling of largeness and smallness is enough to make anyone feel crazy yet we all feel this way at our house. As the cat said, "you must be (mad) or you wouldn't have come here"
Today begins a week off of school for Sophie. In some ways this is a great 'rest' of sorts. There is no rush to get up and get out the door. I can let her sleep in and take our time eating our breakfast. We can lounge on the sofa and watch movies or some of her favorite TV shows. The downside of having no school is that there are endless hours to fill. One moment she wants to color, the next she wants to go knock on the neighbor kids door, then she is crying that she is board. This morning she picked the skin off from around her thumb until it bled saying she is nervous that the behaviorist wont keep her appointment today. It breaks my heart when she does things like that. I can't imagine what torment her little mind must be in.
Then we have days like yesterday. We all went out to celebrate Emily's birthday. Sophie asked to wear a dress, never mind that she doesn't own a dress, her sister found one to lend her. Sophie allowed Em to 'style' her complete with hair, lip gloss and super cool boots. Soph filled her skull bag to the brim with toys and her IPOD then we were good to go. We arrived at the brunch spot and thankfully they sat us quiet'ish area in the back. The meal went off without a hitch, she ate well and was mostly calm. The ultimate moment for me was that she reached out and grabbed Emily's hand and they walked to the car holding hands and chatting. We spent the rest of the day at home just hanging out and ended it watching the Wizard of Oz. Such a typical, lovely Sunday. So very rare in our lives.
I think you can now see why I feel like Alice. The difference is I never know what I am waking up to a drink me day or an eat me day.
Our house is a crazy Wonderland and I am just hanging on and going for the ride.