1,051,200 Minutes

It's 2 years, in case you were wondering. More importantly, it's the amount of time that it took a team of the best pediatric specialists in the world to finally name what happened to my daughter. I decided to create this post, because I think most people are pretty unaware of what a long process obtaining a diagnosis can be. Especially when things can't be clearly tested for with a blood test, can't be clearly seen through facial of bodily features, things that can have varying degrees of severity, present differently due to comorbid conditions...etc. People don't realize how messy this can be. They don't know how many times I've cried myself to sleep after being told my daughter probably has X,Y, Z....which is horrible, but then ended up not having. It's emotional. And if you don't follow up and stay on top of it, no one is going to chase you down. They'd be content forever to say "Lola has muscle weakness, Lola has seizures."

People ask for updates and it's hard to remember who we updated on what. So I get a lot of "I thought you said it was this...." Well you know in January we were told that it was that. So let me catch you up to speed. And people look at you like, "How is it you didn't know....?" Well that is the reality of the diagnostics game. It's ever changing, that is until it isn't.

So let me share with you all the possibilities that were thrown on the table: Intrauterine Stroke vs Stroke at 4 months of age. Cerebral Palsy. Paroxysmal Dyskinesia. Dystonia. ITA Disorder (mini stroke), Epilepsy, Chiari 2 Malformation with Motor Planning Dysfunction, Internal Tibial Torsion with Spastic Reflex, Genetic Disorders....A,B,C,D.E and Pediatric ALS (arguably the scariest thing I've ever heard). And each one of those doctors believed what they were saying.

So believe me when I tell you that these 1,051,200 minutes of Lola's life have been exhausting...emotional...defeating...maddening...and more. When everyone who is the best at what they do, from the best children's hospital in the world, all disagree....what do you do? And every time we thought we were sure, we'd update our friends and family only to be told...."No, it's this."

Diagnostics is a puzzle I never appreciated until I participated in it firsthand. It's not one or two or three doctors weighing in. It's one doctor who weighs in, followed by another doctor, then the two of them get together and refer to another specialist once they've come to an additional question. You go to that specialist who weighs in, then gets together with the first 2. Then the three of them, generate findings and additional questions and call in the 4th and so on until you have 3 Neurologists, an Orthopedist, A Muscular Disorder Specialist, Epilepsy Specialist, Cerebral Palsy Specialist, Geneticist....all working on the same team. And they don't just say...hey it looks like X, Y, Z....no they painstakingly rule out all those "could be's" from the list above.

In these 1,051,200 minutes, I've recounted Lola's entire history more times that I can count. I've taken more pictures and videos as evidence, taken my daughter to more appointments and tests and procedures and repeated them. It's like a shampoo bottle, "Wash and repeat." And Lola, my fierce girl, has dealt with it in a manner that truly fits all the nicknames we have for her; Wonder Woman, Beast, Fiery Pants Cole.

And all those minutes lead you to what you hope is your final stop on the diagnostic express, an answer. So know that when you ask me about Lola and what she has, what happened to her and I say, "Lola has Mild to Moderate Hemiplegic Cerebral Palsy with Secondary Epilepsy due to an acute left ventricular intrauterine hemorrhage." That a lot went into that answer. And yes in layman's terms it means that Lola had a stroke while she was still developing in the womb, the static brain injury resulted in cerebral palsy which in Lola's case also includes seizures. And if we spoke 6 months ago and said "they are worried it's ALS or Paroxysmal Dyskinesia (Both just super scary options." That I wasn't confused. I just didn't have all the puzzle pieces in place yet. That two years of testing and data collection, two years of seizures, mini strokes, occupational therapy, physical therapy, leg brace fittings, MRIs, EEGs, blood tests and so went into this puzzle. Two years of combing through prenatal records, birth records and pictures...all had to fall into their own spaces.

And honestly, for the first time in two years, I'm comfortable with the answer. It finally feels true. Yes this happened to her. And this is what is left as a result. Now that I'm at the diagnostic finish line, I have so many other things I want to say and resolve....like how I was treated while I was pregnant with Lola....about her first few days of life when we were told "babies feet often curl in because how they sit in the womb." How instinct and maternal knowing was brushed off time and time again, until the evidence was glaring. The apology I would like to hear from the person who might very well be responsible for what happened to by child. The one I'll never hear. But those are separate posts. And while I'm 100% certain that Lola deserves that apology, I saw at least 20 children, more impaired than Lola, that need to hear it more than she does.

I don't have a nice wrap up for this post. I'm listening to Lola snoring in her room and realizing I've let her nap too long, so....the realization that sleep is going to be rough tonight is setting in. But maybe I do have a wrap up, because just now...typing that very mundane normal thing, it hit me that Lola's life is way more typical than atypical. Like any other two year old on the planet who has napped until 7 at night, she will be up terrorizing us well past an acceptable hour. Good for her really. I hope she has blast doing it.

Insert Witty Title Here

I've been scolded recently, very recently for not being more cheerful about the life I've been given, more specifically...we as a family have been given. I'd love to say something profound, but this at the core is not profound. People survive, cope, and thrive in many ways. My way is just not as sunny as others.

Now I know, I do....I love reading blogs and posts from SN parents that are super "Yay my kid" and "I wouldn't have it any other way" I have a few myself that come a smidge close to that. But while those are lovely and leave warm feelings and happy tears for all that read....that isn't my reality.

People assume that this means I am weathering my life with less Grace than others. And I assure you, it's not that. Because I believe that Grace includes transparent honesty...even if that honesty doesn't leave people wanting to sing "You are my Sunshine" and sit around pretending the disabilities no longer create road blocks for children.

No. Having a fierce outlook, not what others perceive to be Grace, is what gets a person ahead when road blocks are everywhere they look. Will. Will to overcome....even if it means you are not sunshine and roses about it. I'm not sunshine and roses, and neither are my children. I'm okay with that.

While sunshine and roses posts make people feel good, they do not achieve the goal I have in mind when I post about my life with these children, the goal of helping other SN parents not feel so alone. If everything feels like shit...because your reality is shitty and all you come across are people telling you how happy you should feel about it....well, that's pretty isolating isn't it? So not only am I in hell, but it's also a hell built for one? I don't think so. As I see it, SN parents are already isolated and marginalized by society, they don't need to be marginalized by other special needs parents.

And if you think it's untrue.....join a mommy forum and bring up a topic specific to SN parents, watch as the pitch forks come out. The truth is, everyone wants to say they are open minded, inclusive, compassionate, understanding....but just mention Autism...accomodations....developmental delays and watch the Neuro typical brigade make an ass out of themselves. No. People get enough of that, they don't need it from me as well.

So it's a new year and I should be posting something deeply introspective, upbeat, and blah blah. But I'm not. Because my reality is that home with my two kids...it's sad and it's hard. Yes we are happy, but it's bittersweet and it's wicked hard work. And then I go to work, in a town filled with sadness, everywhere you look. Poverty, homelessness, drugs....death...neglect, sadness. And while there is a reason filled with Grace, that I am there. A desire to do the most good with my specific talent. It doesn't make it easier. It's a hard life. And I'm not all "Happy Happy Joy Joy" about it. It's sad. But you'll notice I never said it wasn't worth it. It is. So are my children. Try not to confuse that emotion with happy because they are not mutually exclusive.

What is it anyway?!

So many people have asked over the past 12 or so months, so I've decided to Answer. It's asked in many ways and the asker often doesn't realize that the question can come off as a dismissal. What's wrong with her!? She looks fine! Or some variation. She is fine as it turns out. She is amazing. But that isn't the point. Special needs parents often feel like they need to defend themselves and their children for being honest with the world about the struggles they live with. I'm not under the impression that people mean their questions that way, just disturbed by the trend of people trying to normalize everything because it is too hard to see children struggle. It is this attitude that keeps people from seeing children suffering and dying from diseases....diseases that have underfunded research efforts because people would rather buy pink and say they did their part, than admit that children suffer just like adults.

Anyway, here is an answer. And when people ask me from now on, I'll refer back to this post and attached picture. What is Hemiplegia? OMG children can have strokes!? She looks fine, you're worried for nothing? Why would you have her brain scanned!? But she's so cute....... I've decided to answer the only appropriate question. What is Hemiplegia:

Scientific Answer:

What is Hemiplegia?

Hemiplegia (sometimes called hemiparesis) is a condition that affects one side of the body (Greek ‘hemi’ = half). We talk about a right or left hemiplegia, depending on the side affected. It is caused by injury to parts of the brain that control movements of the limbs, trunk, face, etc. This may happen before, during or soon after birth (up to two years of age approximately), when it is known as congenital hemiplegia (or unilateral cerebral palsy), or later in life as a result of injury or illness, in which case it is called acquired hemiplegia. Generally, injury to the left side of the brain will cause a right hemiplegia and injury to the right side a left hemiplegia.

One child in 1,000 is born with hemiplegia, making it a relatively common condition. About 80% of cases are congenital, and 20% acquired.

You may also be told that hemiplegia is a form of cerebral palsy, a descriptive name for a wider group of conditions in which movement and posture are affected owing to injury to the brain. These conditions are lifelong and non-progressive i.e. they do not get worse, but they may look different over time, partly because the child is growing and developing.


Mom Answer: Hemplegia is a little girl who loves to dance. She tries to twirl and whirl with characters on a tv show and continues to fall. At 19 months this little girl already knows that there is something wrong with one side of her body. She glares down at her bad foot and points with her weak arm and screams "Foot Dumb!" Before collapsing into sobs.

What is Hemiplegia:

And yes she is cute. She knows that already. But Lola doesn't strive to be cute, she is spicy and wants more than that. She strives to run, jump, dance and get dirtier than her brother....so dirty she has hard earned the nickname "two tub Cole" Children aren't just adorable, they are small people, with hopes and dreams like the rest of us. Sometimes they are heartbroken, sometimes they get down...they have good days and bad days and they have real problems. Yes they are cute, but seriously that is just genetics encouraging us to keep going with weeks of no sleep and through the terrible 2s...3s....4s....it goes on an on.

I don't usually get all up and arms about these things. But then I think, there are children whose problems are way bigger than either of my children's and we see those kids get ignored by society all the time. It's time to stop turning a blind eye and doing something. Even if it makes you sad.

The Luckiest

The Luckiest. My favorite song by far. I always thought of it as a love song between a husband and his wife...soul mate type of deal. Have you heard it? No? Go to Youtube right now, listen. It's worth it. Love, having someone, be it a partner, friend, sister, someone who you know defines and shapes your life in a way that if they were gone, that life would be unrecognizable.

There is a part in the song that talks about what ifs. Like what if I was born 30 years before you, we never met and one day you walked by me on the street....would I know that I had missed out on everything about you that makes my life so amazing, special, unique? What if you belonged to someone else? What if my sister had different parents? What if I went to a different college, Phill stayed in the army and was killed over seas....and I never had these children? My babies. These kids who keep me up at night, worry me, these two amazing special needs, beautiful children. What if?

And I spend a lot of time thinking about our bad luck. Death, Miscarriage, Autism, CP....and the things that came before that. A failed adoption, fostercare, a very lonely and deprived childhood. So unlucky. But really, what if those things were different? Would the things that make my life so beautiful still be mine?

Like my son, with his big green blue eyes that I would know anywhere. And my little brown eyed amazing girl. "cause in a wide see of eyes, I see one pair that I recognize and I know that I am the luckiest" And as corny as it is, I am still, Autism, CP, PID, seizure, stroke....I still am, the luckiest. Because at the end of the day, I would never want to live my life without this husband, not just any husband, but this one. This little boy, not any little boy, but this very boy, this imperfect boy and everything that makes him who he is. He is mine. And if I wished away Autism, maybe that life would have been easier, but maybe this little boy would have been given to someone else. And that life....I don't want to know that world. The one where I may pass a little boy with blue green eyes on the street and wonder if I knew him, just for a moment and then moved on. That little boy, everything that makes him who he is...belonging to someone else. I am the luckiest.

And this little girl, this little girl who keeps me up at night worrying about strokes, developmental milestones, shrinking growth plates, PT and orthotics, sedated MRIs and brain damage. What if I wished the CP away and that life was easier? But what if this amazing little girl belonged to someone else? What if in her place I had a different girl and saw my Lola someday at a school play, with her fluffy owl hair and her warm little brown eyes, her spark, her smile and she belonged to someone else? Would I know what I was missing out on? The joy of being her mom. Because I wished away the hard part?

And that life is unrecognizable to me. Those what ifs.....it's nice to think....but I don't want them. Because this imperfect life, it's too much to lose. It's part of me, they are part of me. That past that sucked, but it lead to these children. And they came with baggage. But I'm learning, everything worth having does come that way. And We, Phill and I. Michelle and Kris. Our little family. We really are, Autism, CP, Dyslexia...We really are the luckiest. Because look at what we have. And those four sets of eyes, I'd recognize them anywhere, even if the what ifs happened, I'd always know, there would always be a void and I'd wish for this life, with these little faces, these gorgeous souls, and everything this life entails. Because really....just look at them. Then try to tell me that I'm wrong. But you can't can you?

One by One

When I was in 7th grade, I discovered that I was a singer. I loved to sing and hell I was fairly good at it. I participated in several singing groups, competed in competitions, at an otherwise really just awful time in my life, singing brought me a lot of happiness. It also gave me something to look forward to. There was a time, when college came around that I thought I'd go to the conservatory, I'd continue to sing, study piano...maybe keep up with the clarinet. But I decided to be a teacher instead and I stopped singing. Funny thing about the voice, that ability fades if you don't use it. But life got in the way, there was no time for joining a choir, friends, life, family....things got hectic, grad school happened, I took in a teenager, infertility, loss......the roller coaster of life. And I let it go. It was a major loss. Part of me gone that I still miss. Every time I sing, I cringe...it's not what it used to be.

There was a song that we learned in chorus in 7th grade called "One by One". I remember how much I loved it then, not for its ease on the ears, but the words really spoke to me in a time of chaos and turmoil. It even came complete with a back story. It went something like this. A mother was searching for a wife for her son. There were three village girls in the running and she just couldn't decide who was best, so she decided that the best way to go about making sure that she chose the best person for her son was to put the girls to a test. She gave them each a large ball of tangled strings. The first girl tried to be the quickest to unravel it and made the ball more tangled and more of a mess. The second girl gave up too quickly and decided it just couldn't be done. But the third, sat down and untangled the ball one string at a time. While she untangled she sang a song about solving problems one thing at a time. How even when things are stacked on her horizon like a looming mountain that seems impossible to climb, she had to just take one step at a time. There was mail to be answered and friends to call and not enough time, but she had to call one friend at a time, answer one letter at a time, fit in one thing at a time until the pile became a hill and the hill became a plain. Until life was manageable. Of course morale of the story..she was chosen as the wife. She'd passed the test.

I've failed it.

Anyway, this song has come back to me several times in my life, but I find it more and more on my mind as my life becomes a tangled hot mess of obligations. ABA, Speech, OT, EI, PT, MRIs, EEGs, Work....the mom to two special needs children thing. I've had to compartmentalize my life in order to meet my obligations, stay organized, schedule every minute. It's overwhelming. I've split my life into categories and some of them have been more neglected than others. Not because I want to, but because I have to. Recently this has lead to some real sadness in my life, a loss I'm not sure my heart is ready for. I'm so sorry friends and family. I'm not perfect and this mountain has overwhelmed me. People are always quick to tell me how much grace I've weathered life with, but the truth is, there are some things I'm failing at royally. I don't know how to be CP mom warrior, Autism mom to the rescue, reading specialist in a level 4 school district with endless energy.....and still be an awesome friend, wife, sister.... it's a huge mountain. Little things that used to bring me joy have brought me to tears.....Christmas cards? Huge undertaking, but I couldn't bring myself not to reach out in that little way.

I keep saying the lyrics over and over and over again. "One by one.....green by green, red by red" But I'm failing miserably. And instead of gaining back my life one by one, I'm losing things one by one. And it's breaking my heart.

The consultant that my school district hired to revamp some of it's programs has a mantra "find what is right in what's wrong" I'm trying. I'm really trying, because this seems to work for her. I want it to work. But the loss, it's overwhelming. Not only have I lost and rerouted my hopes too many times, but now I'm losing people. Not to death, but to the overwhelming taxing that comes with being friends with someone like me, who has problems that overshadow everyday problems, joys, anything other than cerebral palsy, autism, primary immuno deficiency...seizures. There is little left of me to relate to anymore.

While it breaks my heart that the answer to a hard life and loss is more loss, that the natural consequence to a hard life and problems I never asked for, is more heartbreak... It is what it is. I've heard other special needs parents talk about this and always considered myself very lucky. I don't have a lot of friends, I chose mine carefully and I love the hell out of them. I never thought this would happen to me, but it has. I had been warned. It's too hard foe most people to be the friend who always needs to be the support. I tried not to be the friend who always asked and never gave. I failed.

I'll be honest when I'm feeling bitter, I think that I'd like a chance to be the friend on the listening end. I think I could rock the hell out of that. I could be that friend if I didn't have Asher and Lola, I could be really awesome at that. But we each walk in our own shoes and no one is without their own hell. And life isn't divided into people with heartache and people without heartache. At the end of the day all that I can keep coming back to is how isolating this life has become and how alone we all truly are at the end of the day. Instead of sorting through problems one by one, it seems that we lose things one by one.

Dreams, Hope, identity, love, friendship, living without fear, happiness. While I can't remember a time I was happy as a whole, I've had moments of happiness, even in my darkest times. Those moments are vivid in my memories and I replay them often. I have to wonder if any of my current happy moments will be that bright later on. Dear God I hope so, because they are fewer and not as intense. They are fading one by one.

But here is what is right about what is wrong. I sing when I'm sad. I think it is because singing links me to happy memories and times. I've started singing more to my children. I even find myself singing in the shower again, singing in the car. I'm sure I look awesome to other drivers out there. I'm reliving days when I thought I'd run away to Broadway and sing in Les Mis. And my kids love it. Maybe these will be my vivid happy memories later. Or hell even if they aren't for me, maybe they will be for Lola and Asher. Even if that reality is colored differently than it is because of it. I'm okay with that. Anything but more loss please. I'd love to get to a place where I can start adding things back instead of deleting them.

I'd like to be Holly again, not just the person who loves Asher and Lola so much that being their mom is crippling sadness. I'd like to be the awesome sister and friend and wife that I used to see in the mirror. I'd like to be that singer, the girl who played beautiful songs on the piano, the girl who got lost in stories, who could easily laugh and engage in silliness that would make a 5 year old jealous. I'd like to be carefree. I'd love to have something to share in conversation that doesn't have a damn thing to do with autism, cp, PID, reading disabilities. But this is my life. And until I can get through this mountain, one little thing has to be okay. So for now, I'll keep singing to my kids. They have to be enough. Even if there is nothing else. Look for the good in the bad. Just keep looking.

One By One (author uknown)

Sometimes my life is like a ball
of mixed up colored string
So full of knots and tangles
I just can't do a thing
And when I go to sort it out
I realize that I'm
Gonna have to take it
One string at a time

Chorus:
One by one, each shining colored thread
Blue by blue, green by green and red by red
Til the colors come untangled
And the knots are all undone
One by one, one by one

The mail I should have answered
The friends I ought to call
The gifts I haven't given
I just can't do it all
It lies on my horizon
like a mountain I must climb
And I'll have to take it
One thing at a time

Chorus

The songs I haven't finished
Unwritten and forlorn
Are stacked on my piano
Just waiting to be born
The tangled strings of melody
The ragged scraps of rhyme
I'll just have to spin out
One song at a time

One by one, each shining colored thread
Blue by blue, green by green and red by red
Til the colors come untangled
And the knots are all undone
One by one, one by one, one by one.

Three Little Birds

I've been having very vivid dreams lately. The kind of dreams that you wake up from, not sure if they really happened or not, having sworn you could touch, taste, smell....feel pain. These dreams weld themself with reality in clever small truths that make them hard to shake when morning hits. There was a time when I had these dreams about Elisabeth. In the early months after her pregnancy ended and we were left with nothing but the knowledge that life could have been so different. I dreamed a lot then of what that life would have been like, with her in it, what our family would be. And sometimes I was left with that same feeling when I woke up, often wondering "did that really happen?"

5 years later right after Asher's diagnosis, I had those dreams about him. In my dreams he was older, sometimes severly disabled (thank you stressed out brain) and sometimes looking just the way my heart hoped he would. But they were real. I swear I could remember what it felt like to hug him and what his voice sounded like. My happiness or sadness in those dreams...so tangible.

It's been a while since I've dreamed that way. My brain it seems, only likes to torture me when life is not going the way I had hoped, when I'm struggling to remain in control of my emotions, when I'm filled with a sense bitterness. And those dreams have started to come back, which makes sense because I'm feeling really bitter now.

These dreams are about Lola. And I have to back up before I go and just talk about her for a minute. My Lola. My daughter. There is something so so special about having a daughter. I love my son of course and I always wanted boys. I was unprepared for how this little girl would steal my heart and the connection I would feel being so different than the one I have with my son. My little girl. And she is amazing. She is the sweetest, easiest baby. She is a love. I have no complaints. Lola does nothing but make our lives richer, brighter, happier. She is amazing.

So it's hard to say. It was hard with Asher too, learning how to say "My son has Autism" was pretty hard. So I'm not surprised that I'm fumbling over this and feeling awkward about it. So I'll just rip the bandaid off and say it.

My daughter has Cerebral Palsy.

There I said it. My Lola.

I remember back to when I was still pregnant with Elisabeth but we knew that things were going to end badly. We were just waiting for her heart to stop, just waiting for things to end. I used to sing Bob Marley's "Three Little Birds" to her over and over again. "Don't worry, about a thing, cause every little thing, is gonna be alright" I mean of course we knew it wouldn't be alright, but it was comforting.

I sang it again to Asher as an infant when he was in the ICU and first DX'd with PID and EoE. I leaned over his clean room crib and sang it over and over and over and over again. It went on to become our mantra. Every battery of testing, every blood draw, every procedure. "Don't worry, about a thing, cause every little thing, is gonna be alright"

And now I've started singing it to Lola. She was fitted for her AFOs (Ankle foot Orthotics) this week and all during the appt I sang it to her. She did awesome and she smiled the whole time I sang. It was comforting. Everytime she curls her foot in and falls because it can't support her body, I sing it to her then too. And a few times, I've caught Asher singing it to her. Three babies, the same song. I guess there is some comfort in that.

My first vivid dream of Lola was deep and sad. I dreamed she was around 10 and for some reason even though she looks so much like Phill, in my dream she looked just like my sister Michelle had at 10. She was tall and thin and looked like every other ten year old on the playground, except she was dragging her foot behind her. Off in the corner on my field of vision, was a gaggled of mean girls making fun of her. And bam, in my dream I could taste tears. So real.

And the unfairness of life just sort of rolls over me and I think to myself. Multiple miscarriages, 3 babies....1 dead....1 autistic....1 cerebral palsy. I mean what the actual fuck?! And people offer those same awkward comments that are meant to comfort

"God only gives us what we can handle" Thank you God for the vote of confidence.
"God doesn't make mistakes" Oh....so then God hates me.
"Everything happens for a reason" Nice. That makes everything better.

When really sometimes bad things just happen. For Elisabeth it was a lack of progesterone, a bad heart, and a mother who couldn't stay pregnant. For Asher is was a cruel roll of the genetic dice and for Lola, a stroke that probably happened in utero or in the first few weeks of life. And those things suck, but they just happened. We weren't chosen and we are no better equiped to deal with these things than anyone else.

A couple nights ago I was rocked by a dream that was more real than any dream I've ever had in my entire life. It has taken me few days to really process it, because seriously, I can still feel the breeze on my face from it.

I was sitting in the garden Phill and I plan to grow for Elisabeth, under the cherry blossom tree we have picked out for her ashes. The breeze was warm and rolled over me in comforting waves. I was humming to myself and running my fingers over a blossom that had fallen from the tree. I heard the chirping first and then my eyes focused in on three little fluffy yellow birds. And they looked so familiar to me. I knew. I know these little ones. They are part of me. One fluffy little bird with a feather on the top of his head that stuck up straight, one little bird who hopped around on one leg, and one bird paler than the others, but fluffier. They chirped and bounced around. And I sang to them "three little birds, brisked by my doorstep, singing sweet songs of melodies pure and true" And two of the little bird changed. The one with the feather on his head turned into Asher and the sweet little bird hopping on one foot turned into my Lola and they sang with me "this is my message to you you you...."

And I sighed. I hugged them and I ran my fingers through one fluffy dark blond head of hair and then one fluffy brown head of hair. We laughed and hugged and I told them about Elisabeth and her garden. I said "I wish Elisabeth was here, then everything would be perfect" Then Asher took my face in his hands and said "But Mama, she is right there" and he pointed to the third little bird, the pale fluffy one. And I knew. She was there.

And my third little bird bounced over to me and jumped into my hand and whistleled "Don't worry about a thing, cause every little thing, is gonna be alright" and then nesteled herself down and went to sleep as a stroked her fluffy little back.

And then of course I woke up, feeling like I had just been hit by a truck. So real. So bittersweet. But I'm choosing to take my brain's message and run with it "Don't worry, about a thing" So I'm not. I'm looking at the bright side of the hand we've recieved and telling myself over and over again, Asher's autism is high functioning and Lola's CP is mild. They will struggle but every little thing is gonna be alright. And I have to believe that. I do. Because it is true. There isn't any other option.

Chutes and Ladders

When I was little I loathed the game Chutes and Ladders. Every time I began to progress forward, that damn slide would come up and bite me in the ass and send me spiraling back down to where I started, or worse left me further behind than ever before. I've always hated that fucking game. And yes I just swore. That is how strongly I feel about it. The worst part of that game is that there are more slides than ladders, why?

Much like the game, life with Asher has been an almighty struggle up those damn ladders, just to be tossed back down again. Sometimes the regression is small, sometimes it brings us back further than my mental wellbeing can handle.

We're having a summer of slides. As in, we're really struggling with Asher. I know this is part of it, but knowing that, never makes the sliding backwards easier. The knowledge that the regressions will happen, looms over you like a dark cloud, even in the good times. It is always there. You'd think that it would prep us for when the whole sky turns grey and opens up in a cold wet downpour, but no, we are still cold and wet.

The ramp up to this happened slowly. It started with Lola being born and the end of the normal school year. We were away from speech, OT, and Farm therapy for a while. School closed for the summer and a very abridged summer school began. And Boom! Good bye consistency.

You could feel the pressure building, so much so, that Phill and I actually fought over going to the fireworks. From the first uttering of his diagnosis, I have sworn up and down not to hide Asher from the world and to go out of my way to include him in normal life....which includes celebrations. I'm slowly ebbing away from that resolve, but dammit Asher deserved to see the fireworks.

So I brought him. Phill stayed at home with Lola and I brought my little guy to the fireworks, knowing full well that the fireworks by nature of what they are, are a sensory overkill wasteland waiting to happen. I brought him anyway, because I am too proud not to and more selfishly, there is a part of me that dreams of watching my child experience things as a normal child would, maybe this would be his moment.

The reality of how this all went down still plays through my mind. We met my sister, brother in law and Asher's cousins. The kids were all really excited. Both boys were overstimulated from the start. Like a real cheapie, I stocked up on glow sticks and swords from the Target $1 section so we wouldn't have to buy a $15 substitute when we got there. Of course, swords for the boys, hindsight really, just a bad choice. Because those damn swords.....I was poked in the eye twice, Michelle once, and Kylee jabbed in the side of the neck. Bad choice Mama, bad choice. I suppose they were marginally better than the seizure causing, light fests in a tube that other children were wielding...but I digress.

We got there early, because otherwise, NO SEAT FOR YOU. I hate getting places early with Asher. The anxiety caused by anticipation on both our parts is just agony. I was constantly aware of Asher's place in space, but part of my mind I allowed to wander and scope out the scene. The scene in front of me of other children, sitting on blankets, patiently waiting for the fireworks to begin, chatting with siblings, laughing with parents. Asher?..... shit I blinked, where the hell is he?!? Asher was so stressed by all the people, that I had to take him to pee 4 times in the 30 minutes we had to hang out before the first boom lit up the sky. 4 Times. And no we couldn't wait in the crazy long line for the porta potty each time. People in line rolled their eyes when I walked by them for a third and fourth time, leading my child to the wooded area so he could pee. Suckers, you've been in line for 30 minutes.

And this is pretty much how it went down, Asher overstimulated, me holding him down to calm his body. He needs to pee. We come back to the blanket, he is calm for two minutes. He gets up and runs off, I find him, he has to pee....rinse and repeat. It was exhausting. And meanwhile, I am acutely aware that I'm one of the only moms there having to do this. And then even worse, I'm thinking "crap Phill was right, this is going to suck"

So the show starts. We sit on the blanket, I have Asher wrapped in my arms and legs tightly, and I snuggle in close to him. I watch as the colors in the sky play across his face and I wonder for maybe the millionth time how he sees what is in front of him, how his very special brain is taking it all in and experiencing it. And I also wonder, who is getting the short end of the stick...him? Or maybe it is the rest of us. Boom boom....and I whisper in his ear, "did you see the red one and the one that looked like a smiling face?" and he tightens his hand around mine twice to say "Yes" but no words. But he is entranced with the exploding energy in front of him, I could feel the energy in his body and wonder again what is it like to actually live in Asher's body. But still in all that, I see the wonder of childhood in his eyes, the happiness, the memories forming, hopefully happy memories of a time he came to the fireworks with his Mama. Hopefully he remembers me being loving and patient. Hopefully he remembers me smiling too.

In the past 4 weeks since then, summer has just sort of gone down hill. We decided to throw him a late birthday party since I was way too pregnant in April to even consider it. The party itself went well. He played with others and seemed to have fun. Except he decided he couldn't handle anyone singing Happy Birthday. And you know, at the time I didn't think much on it, but that was the start of his auditory tolerance breakdown. Since then, every time the baby cries, you see him crawling out of his skin. It is almost like her cry hits him somewhere in his central nervous system and slowly tortures him like the scream of a banshee or a slow dragging of nails across a chalk board. And to boot, Lola is teething, so she cries a lot. Sometimes he cries too because he just can't handle. But most often he screams "Stop Crying" or he'll try to make louder noises to drown it out. The hardest for me to watch, is when he rolls on the floor crying and covering his ears. It makes me sad.

And sleep? We thought it would be the baby that kept us up all night and tortured us with good old fashioned sleep deprivation. But no, she wakes every few hours to eat, but like a real easy baby, goes right back to sleep. Asher? He can no longer sleep for more than 2 hours at a time. And it is really draining me. Every night, he crawls into bed with us at least 10 times. Each time we walk him back to his bed and take turns snuggling him until we think he is asleep...only to find him in our bed again not long after. We used to give up and let him stay with us, but he isn't sleeping even in our bed anymore and he tosses and turns and kicks and flails. He is like a zombie child during the day, he even has dark shadows under his eyes.

So we've upped the melatonin and come to a dark enough place once or twice, where we've been tempted to give him Benedryl....but no we haven't gone there. We always promised we wouldn't drug him. I think about things like Trazadone all the time. I took it for insomnia as a child. I don't know. I hate these decisions. I want to make the right choice for him, not do what is easiest for us. But this slide down, it has been long and steep....I'm exhausted. And the kicker is, as much as I want out of the downward spiral, I know climbing that next ladder is going to be HELL. I'm tired. But we move on. Eventually someone wins this fucking game right? Historically speaking, it has never been me, but hey...stranger things have happened, so I'll just keep rolling the dice and see where it takes us. Hopefully the next roll brings on a great school year, progress with ABA, speech, OT...maybe some new friends, a breath long enough that allows me to enjoy my baby before she is no longer a baby. Even if the roll just brings us to an in between space, the consistency would be nice, I'm really starting to miss that in our lives.

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