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.