Anger

For so long, I wasn't mad. What good would it do? I grieved exactly the way I was supposed to. The infertility, the death of a perfectly "healthy" beautiful baby, the autism diagnosis and all that goes along with it. I was on it. I had it handled. I was seeing the silver lining, seeing the beauty.

But years of being at home alone with twins that were constantly sick, a special needs child and that empty chair at the dinner starts to eat away you. Before long, I had no idea who was looking back at me in the mirror. I used to see a person full of hope, faith and energy. I had perspective. Now, I see someone who is shattered. Broken by years of grief and unchecked stress. She's anxious, irritated and angry. The perspective is gone. All I see is the bad, the heavy. I only feel the constant weight of our life, the failure of motherhood. A shell of what was.

It wasn't supposed to be this way. I never thought it would be easy. But sometimes, I do wonder why? Yeah yeah yeah, everyone has their issues. But not everyone has this. Its not just a special needs kid, two poorly adjusted kindergarteners, endometriosis, unexplained dizziness and a broken furnace, it's also a grandma with a serious head bleed the day before a brother with suspected meningitis turned sepsis the week before the anniversary of Ellie's passing. And it's like this all time.

I'm tired. I'm exhausted. And I am angry. I see the ease that other families navigate daily life without appointments, intense schedules, anxiety and neuroses to deal with. They go to soccer, meet friends for dinner (because they are invited out by families that have kids that are nice to their kids), plan spur of the minute trips and the biggest upset of the weekend is how to fit hockey in with soccer and dance class. I hate them. I hate their ease and I hate that they have no idea what it's like on this side. I hate the exclusion and isolation of being surrounded by "perfect." 

The anger comes fast and hard. I hate that it's the people in my house that catch it. But I have no strength to stop it and no where else to go. I'm angry that my baby got taken away while others pop theirs out one after another without any consideration to whether they can care for them. I'm angry that some people are given incredible miracles only to toss it aside while I begged for a miracle as my baby turned into an unrecognizable being right before my eyes. I'll take that miracle! I'll trade your wasted breaths for my chubby hand baby. I hate the memories that surround those days- things that no one should ever have to see and unspeakable decisions. I hate the holidays because there is always someone missing- it's never complete. I hate my birthday because it's 11 days before Ellie's and while I get older, she's forever 9 months and ten days. 

I hate autism. Not my son. Autism. Because Max is not autism. I hate that people don't see the difference. I hate that it runs my entire life and dictates our every movement as a family, and I hate those who don't understand why it has to be this way. I hate that doctors won't help him and there are no answers. I hate watching my son struggle every day and seeing his face contort into painful tics that no one can stop or is concerned about. I hate dealing with the school and idiot teachers who treat my kid and myself like secondary citizens. I'm mad that everything is so difficult, that everything is a fight. And that it is never enough, it never stops.

I hate the collateral damage. Conversations that end with an angry five year old because you buried her sister before she ever got to meet her. Kids that know too much of Heaven, and exceptions that must be made for certain situations. The knowledge that they will surely hate me when their older because of it. The complete fear and utter terror that comes with the warm skin of a child with a fever. The cascade of images that flood in with the fear- grey skin, eyes rolled back, sirens, the faces of knowing nurses and doctors, the smell of hospital soap, the grinding sound of a line being placed over the sound of me singing Baby Beluga, the constant beep of the low pressure alert, the oozing, the smell of vomit, the voice of the responding officer, the sound of the suction machine, the sound of "I'm sorry". 

I'm angry at our medical community for failing to protect and help my child. I hate the appointments, the gas lighting, the lies. I hate the supplements, therapy, droppers and syringes. I hate that I'm not sure there is help out there anymore. I hate that I don't trust those that says they can help and that the help offered is so complicated. I hate special diets and have come to despise food in general.

I hate anxiety and all of the control is has over me. The pounding heart, the shortness of breath, the dizziness, headaches, blurry vision and fatigue. The feeling of drowning while those around you continue to not notice. The feeling that everything is spiraling away and you lack the ability to control anything. But what I hate most about anxiety is how angry it's made me. The constant fight or flight response presence has depleted my ability to control my anger. My body and mind have lost the ability to appropriately respond to stress and has left me broken, exhausted and angry. 

I hate feeling this way. But am starting to wonder if it's partly because I never felt this way earlier. Grief has a funny way of not giving a shit what you think. It demands attention and it'll just take it if it's not offered up.

Maybe it's time

This screen. This blank screen. I've been here several times over the last few years. I've put down a few sentences and closed out. Unsaved. 

What was the point? 

Seven years ago, I needed to find a community. We were nearing an autism diagnosis and needed someone to understand. I think of that girl who came up with up with the blog title "The Broken Road." She thought it made sense, we'd had a rough road having a baby, but there we were with two beautiful babies. Yeah, autism, but we could handle it. It was broken, but it would be a beautiful road. 

I think of that girl and it makes me so sad. So much innocence, hope, strength. She had no idea what was coming. Within weeks, it would be gone. That beautiful baby would be gone, the naive outlook on autism gone. That girl, gone.

Seven years ago, this blog kept me going. The moms I met... I have an unexplainable amount of respect, tenderness and love for them. They got it. They were my community. My words were their words. But as time and technology changed, so did our community. Rainbows appeared, Instagram popped into our lives and my need for this place became lesser. My need of them is met in Facebook posts and a quick sentence accompanied by an Instagram picture. Its a beautiful thing, what the Internet has given us.

But this place never became the place I was looking for in the autism world. That place was a lobby in the Early Childhood Building a few miles from our home. For weeks, I sat there waiting for my boy to come out of "class." I didn't say much. I spent my time staring at the pink nuk in a little sister's mouth. It was the same one Ellie had. I made no eye contact.

 I watched in the morning as one by one, our boys were taken from us. Some went happily, some with screams and tears. I started to look at their faces- the other moms. We were all struggling. At some point, referrals started being passed. The "oh yeah, we don't do haircuts without blood shed either" stories were shared. 

They were- ARE- my people. My lobby moms. My real life, I can drink coffee, or frozen adult drinks, in your living room, people. My I-can-hug-you-any-time-I-want people. (Well not one- she doesn't like that.) we have been through hell and back a hundred times. Among us, there has been the death of a child, divorce, a stroke, a child diagnosed with T1D and a husband with a catastrophic near death illness. 

We are ragged and weary. Our boys are amazing and beautiful, but have put us through the wringer. We get what the word "meltdown" means. We laugh a lot, especially at things we probably shouldn't. We leave spots at the table for the massive amount of baggage and anxiety each other brings.

I can't even think of where I'd be without my lobby moms. And as much as I'm thankful for my online loss moms, I'm incredibly grateful for my in real life lobby moms. 

I didn't think I needed this place anymore. I assumed thoughts could be sorted on Instagram, Facebook or over pineapple martinis. And for awhile, I was right. What was the point of this place?

But after, seven years, things aren't any clearer. I have my people, but my thoughts are all still jumbled up. Things are feeling harder. Heavier.

Maybe it's the time of year. Maybe it's the almost decade of "broken" road. Maybe it's the feeling of first time parent with kids numbers three and four. I'm seeing less beautiful and more broken. I don't like it. I don't like the jumble of pain, frustration, doubt and anger in my head. The heaviness of life post child loss and autism diagnosis is crushing. I used to wonder all the time how much it would take before I actually shattered from the weight of it all... I don't wonder anymore. I feel like I know.

I have my people. But I have MY trauma. I am finding that for so long, I operated extremely well in crisis mode. But no one can sustain that. And I can't expect that those jumbled thoughts can be untangled by leaning on others. Maybe I need to go back to writing it out. To get it out.

Maybe it's time to come back here.

Five Years Gone

https://screen.yahoo.com/just-breathe-194454840.html

"Yes, I understand that every life must end, aw-huh,..
As we sit alone, I know someday we must go, aw-huh,..
Oh I'm a lucky man, to count on both hands
the ones I love,..

Some folks just have one,
yeah, others, they got none, huh-uh

Stay with me,..
Let's just breathe.

Practiced all my sins,
never gonna let me win, aw-huh,..
Under everything, just another human being, aw-huh,..
Yeah, I don't wanna hurt, there's so much in this world
to make me bleed.

Stay with me,..
You're all I see.

Did I say that I need you?
Did I say that I want you?
Oh, if I didn't I'm a fool you see,..
No one knows this more than me.
As I come clean.

I wonder everyday
as I look upon your face, aw-huh,..
Everything you gave
And nothing you would save, aw huh,..
Nothing you would take
Everything you gave...

Did I say that I need you?
Oh, did I say that I want you?
Oh, if I didn't I'm a fool you see,..
No one knows this more than me.
And I come clean, ah-ah...

Nothing you would take,..
Everything you gave.
Hold me till I die,..
Meet you on the other side."

 

It's been almost five years since this song played as we walked down the aisle of the church. Away from Ellie and into the after. It's been almost five years since I've been able to listen to this song. Five years.

 

In five years our lives have changed greatly. We have moved into a new house in a wonderful neighborhood. Ellie has another brother and a sister. We've watched Max become more comfortable in his own skin and learn to join us in our world more often than not. We've welcomed three adorable nephews. Our lives are different. We've gone forward.

 

But we have not moved on. Upstairs there is still a giraffe that sits on a shelf. Pictures remain on the mantel and side table. Jingle Bells hang from rearview mirrors. Our kids speak of Ellie daily. They know their sister and love her. We still celebrate her birthday.

When Ellie first died I often wondered how life would ever go on. How could days continue to pass without her in this world. I was often angry at those I saw on the street- innocently going on with their lives. Didn't they know? 

As time passed, it did become easier to put my feet on the floor in the morning and get up. Eventually smiles and laughter returned. We did start healing. Holidays and anniversaries passed with greater ease and fewer tears. Dave and I are lucky to have to many family members and friends that help us honor and remember Ellie on a daily basis. We have always been free to talk about her and celebrate her nine months and ten days. The early days of shock, anger and uncontrollable sobs eased and for the most part disappeared. 

But for some reason, five years came rushing down on me and has knocked me to my feet. I'm angry, out of sorts and a teary mess. Addy and Levi go to preschool at the church where we held Ellie's funeral. And up until this week, going there hasn't been a problem for me. But when we pulled in the parking lot this morning, I lost it. With shaking hands, I walked to kids inside and bit my tongue as hard as I could to keep the tears in until I made it to the car. Yes, the return of the car cry. You BLMs know what I mean. It has been so long that I've cried this much. It's shocking. 

Yes I miss Ellie terribly every day. I see the empty spot at dinner table and in the car. The fourth coat hook. They stare at me every single day. But I try to not make eye contact and just keep moving. I see the Time Hop pictures for those who have five year old girls and try not to think about what we are missing. When the neighbor is over to play after kindergarten I try not to think that "this is what our walks should look like." It is always there. For the rest of our lives, we will carry a hole. A hole of what should be a sassy kindergartener, a mouthy and disrespectful teenager, a college student, an excited bride, and tired new mother... These things are never going away.

I guess I just forgot that sometimes the reminder of what we are missing can come back in a not so gentle way. It's not always a sad smile, diverted eyes or the quiet welling up of tears in your eyes. Sometimes it's screaming, torrents of hot tears and anger. Sometimes it's memories of the unspeakable things our eyes have seen and ears have heard. It's brutal and relentless.

I worry that people assume after five years, we've moved on. That grief has subsided and lies quietly in the closet. All tucked away. I guess in some ways, even I had been convinced of this. But the last couple days have been nothing but proof that grief never goes away. We learn to ride the waves, but occassionally, against all our best efforts, a tsunami of tears and pain slams us back into the ground where we started. People say it's the price you pay for loving someone so deeply. And that's fine- I agree. But it doesn't take the hurt away. And it doesn't make it easier. 

After five long years, I still just want my baby back.

 

 

On the Eve of Five: Frozen

Anna and Elsa.

It's pretty much the only thing five year old girls talk about. The only acceptable birthday party theme for a five year old girl this year is Frozen.

Tonight I should be plastering Olaf, Anna and Elsa all over our house in preparation for a certain little five year old to see when she wakes up in the morning. And for a moment, I considered it. A very brief moment. But in reality, every single of one of Ellie's birthdays is a Frozen birthday. Ellie is forever frozen in time. She will forever remain 9 months and ten days. So while I did buy a simple pink "5" candle, the truth is that it is all for show. There is no five year old in this house. Ellie will never be five years old.

Constant sickness among the other kids and the general busyness of life easily allowed this day to sneak up on me. And for that I'm grateful.

Five.

It's a big deal. Five isn't a preschool. Five is school age. Five means school. Five year olds are little people. Most five year olds could talk your ear off about their favorite toys, movies and friends.

Five years after I gave birth to a beautiful screaming baby girl, I can tell you nothing about her five year old self. I know nothing about what shows she likes to watch, who her best friend is or what she wants to be when she grows up. I don't know if she prefers Anna or Elsa. I know nothing about that five year old.

I'm mad. I feel cheated. I'm sad. I'm trying not to go there. I'm worried that if I start tumbling down that dark path, I will fall into a hole so big that I won't be able to climb out of it.

Fortunately (or not, depending how I look at it I guess), there is a certain big brother that is looking forward to celebrating someone's 5th birthday. Max has his Ellie's Light shirt picked out to wear tomorrow, plans on shouting "Happy Birthday Ellie!" upon waking in the morning, thinks we should go out to dinner and have "muffins with frosting." Addy was heard singing "Happy Birthday Ellie" earlier today. And because I make a big deal of the kids' birthdays, there are decoration expectations...

So tonight I pulled out things pink and purple. Sparkly and girly. And lots of pictures of the most perfect little girl with chubby fingers and thighs, fuzzy head and mischievous smile...

sigh

...Tomorrow we are having a Frozen birthday. But there is will be no Anna, Elsa or Olaf. There won't even be a birthday girl. Just some pictures of a little girl, frozen in time.

four years gone

My dear sweet girl,

How has it been four years?

Four years since I put you into your fuzzy fleece footie pjs, turned off the light and rocked your tiny little body.

Four years since I loaded you into the stroller with your brother for an evening walk.

Four years since I listened to your little growl and sweet giggle. It's been four years since I've seen that sweet and goofy smile.

In four years, so much has happened. So much has changed. We have moved into a new house and have wonderful, amazing neighbors. Your big brother Max has grown up into a sweet, smart and hilarious little boy. He works so hard and you would be so proud of how far he has come. Your baby brother and sister are almost 2 and a half already! Levi is so sweet, smart and sensitive. Addy is a stinker, loves to be the center of attention and is a little social butterfly. You would LOVE these two! I'm sure they would drive you crazy, but you wouldn't trade them for anything! I know you would be such a great big sister!

It's been four years and so much has happened and so much has changed. But still, four years later, so much is still the same. I still think about you every day, all day long. I wonder how every single thing we do would be different if you were with us. I see you missing from every single picture and at every family meal. The crisp fall air takes my breath away and I thank you for every single pink and purple sunset we are blessed with. I still miss your fuzzy head on my face as we cuddle on the couch and miss your sweet intoxicating smell.

It's been four years and I still wake up wondering how we are living each day without you. In four years, my mind has not figured out how to wrap itself around that day when you were taken away. I still secretly hope that one day I will wake up and find out that it never happened. That you never went through all of that pain and were here running around laughing with your sister and brothers.

Four years little Peanut. I have missed you every minute of every day. You are always with me and I am so incredibly grateful for every single second we had with you.

Mama loves you Ellie Lauree! Always have, always will.