Friday, October 13, 2017

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.

Thursday, October 22, 2015

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.


 
 

Wednesday, January 14, 2015

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.


Thursday, October 23, 2014

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.


Sunday, September 21, 2014

Ellie's Light Blood Drive

On Saturday, September 27th from 8:30-12:30pm, Ellie's Light is having it's first blood drive in Lakeville, Minnesota.

One in three people will need a blood transfusion.

Our blood drive is a chance for YOU to save someone's life.

If you would like to donate and want to sign up for a time, follow this link:

http://www.mbc.org/Donate-Blood/Search-Blood-Drives
Click on Sponsor Code and type in 4233.

We are also accepting walk-ins!
Memorial Blood Center will have their blood mobile out to collect these life-saving donations:
16972 Brandtjen Farm Dr., Lakeville, MN 55044

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I am very excited to be able to be able to give back to Memorial Blood Center in Ellie's name and here is why...



Ellie’s Transfusion Story:

Our sweet and silly little girl suddenly became gravely ill on October 24, 2010. Within 25 hours, a seemingly benign fever turned into an extremely rare and deadly illness. When Ellie arrived at the hospital, the staff was stumped. No matter what they did, her illness progressed. For some reason, Ellie was becoming septic and her body was not responding to any treatment. Her body started showing signs of a complication called DIC. Essentially, her body depleted itself of all its clotting ability. It was at this point that Ellie started receiving blood products.  As Ellie’s condition further deteriorated, it became obvious to the doctors that Ellie would not survive. As a last ditch effort, the decision was made to put her on ECMO (the heart-lung bypass machine). 
The ECMO machine takes the blood out of the body, oxygenates it, and sends it back into the body. The machine requires several units of blood to operate. This combined with Ellie’s sepsis and complication, DIC, meant she used a lot of blood products. We are not entirely sure how many units of blood products Ellie actually received due to some inaccuracies in her chart. But I can remember a doctor at St. Paul Children’s calling Memorial Blood Bank to say that Ellie had used up all the supply there and he wanted to make sure Minneapolis Children’s would be prepared for her when we arrived for ECMO.
I would guess that between the two hospitals, what the ECMO required and what Ellie’s sick body needed, she used at least ten units of red blood cells, platelets, fresh frozen plasma and cryo. The nurses were constantly bringing blood products into the room.
It wasn’t until after Ellie’s autopsy that we learned her spleen did not work and she never stood a chance against the “high-velocity” germ that took her life. In the end, no amount of blood was going to save Ellie’s life. Her fate was determined before anyone even knew she was sick. But each and every unit of blood product brought into that room gave her a chance. It gave us hope. We can look back and know that every effort was made to save Ellie. Without the blood, she would not have survived more than a few hours. The transfusions allowed our family and friends to get to the hospital to say goodbye and to be with us when we set our little girl free.
We are incredibly thankful to those who took the time to donate their blood, never knowing that it would give our little girl a fighting chance, and her family peace of mind knowing that everything possible was done to save Ellie’s life. And for us, that’s an incredible gift.



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Hope to see you next Saturday!!