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!!

Tuesday, September 2, 2014

Not every kid gets to go to Kindergarten

Awww the first day of school...
A day I have come to dread.

Most parents are dancing in street as the bus pulls away from the corner. Clinking their coffee mugs together in a celebratory cheers. As they walk home, they happily post their obligatory "First Day of School" pictures.

Today Facebook is jam packed with adorable faces sporting new backpacks and shoes, and carefully chosen outfits. Most are holding up carefully designed signs that announce what grade they are entering. Some parents moms go on to lament about the great sadness they are experiencing now that their BABY is gone. Gone? Really? Gone?

Listen, I get it. It's hard to send your child off to school all day long when they have been with you since the moment they were born. I get that it's hard to not know exactly what they are doing, what they are eating, if they are sad, being picked on, etc. I get it. It is hard to realize that your child is growing up and some day they won't need you.

I get it.

But what I would like some people to understand is that not every child goes to kindergarten. 

Sometimes kids die. 

Next year, there will be one less kindergartner getting on our neighborhood bus. And I can tell you that it will rip my heart out. It's going to kill me. When the other kindergarteners in the neighborhood line up to get on the bus across the street from our house, my vision will tunnel, my heart will pound and my breath will evade me. 
Her absence in her kindergarten class will be felt by me yet not a single soul in that room will recognize the loss. I will not be posting a picture of my kindergartener next fall. A picture of a headstone just isn't the same.

Not every kid goes to kindergarten.

In fact, my five year old didn't go to kindergarten today with the rest of the five year olds in our neighborhood either. 

He did go to school, just like he has almost every single day since he was 2 years old. But he didn't go to kindergarten. He went to school, which is really a pseudonym for his "therapy based center." All of his "friends" there have autism too, and very few of them realize that most kids have summers off and don't go to school ALL OF THE TIME. I didn't take a picture of Max this morning. Today wasn't anything new for us. We did speech and OT before heading to "school" just like we have every Tuesday for the last ...... I don't even know how many months...

I know a very sweet little boy that did go to kindergarten today. This little boy has been in school with Max since they were little tiny two year olds. He isn't even my child, and all day today, I worried about him. I prayed he would have a great day, and I hear he did. (Go Gus!) I'm so proud of him and wish I could squeeze him and tell him how awesome he is. 

Why would I be so worried about and proud of a child that isn't even mine?

Because I know how hard he has worked. I know how far he has come and I KNOW he DESERVED to have the best first day of kindergarten ever. He didn't just pick out a new backpack and show up at the bus stop for his first day of school. He EARNED it. His family earned it. 

So when my brutally honest friend said (in regards to all the other "typical" kindergarten parents), "My day is bigger than your fucking day!", I couldn't have agreed more. She, too, knows that not every kid gets to go to kindergarten with all of the other five year olds. She knows that sometimes kids die, and she knows that some five year olds just aren't able to handle a typical kindergarten class. She knows that sometimes this milestone is one that has to be fought for.

Today, I should have taken a picture of Max sitting on our porch steps, proudly holding his "First Day of Kindergarten" sign. His four year old sister, should have been standing next to him holding a sign announcing her "First Day of Preschool". But that is not my life. 

I'm not ok that Ellie isn't here. There will always be an Ellie shaped hole in our lives. But I'm ok with the fact that Max didn't start kindergarten today. Max is awesome, there is NO doubt about that. But he isn't ready for kindergarten quite yet. 

Max has been working his tiny little butt off for the past three years to prepare himself for a day in early January 2015, when I will insist he stand out on the front porch (yes in the Minnesota cold), holding a sign that PROUDLY states, "First Day of Kindergarten."

And I will plaster Facebook with those pictures all the while knowing that not every kid gets to go to kindergarten. I will do it with complete gratefulness for every single therapist, teacher and aide that has crossed Max's path thus far. I will do it with an incredible amount of pride for a boy that has fought tooth and nail for every word and social interaction that has brought him to this place. I will do it with complete respect for every terrified parent that has released their special needs child into the wild world of public schools before me. I will do it with a love in my heart for all of those kids that aren't ready quite yet, or that may never be ready for kindergarten. I will do it with a great sadness in my heart for every parent that will never get to take that all important picture for their child. 

So to every parent that has (rightfully) posted a picture of their precious child on the first day of kindergarten- I beg of you, please understand that not every child gets to go to kindergarten. Please recognize this day with gratefulness and excitement for your child. And please, in the back of your mind, remember that for some parents, the first day of school is a painful and heartbreaking day.

 


Wednesday, February 12, 2014

 Maybe some day, I'll get it together enough to blog again! For now, these three keep me VERY busy!


Friday, September 27, 2013

The Other Side of The Other Side

It has been a while since I've spent any time in this space... Life has been busy and not afforded me much time to spend here. And in all honesty, this space has been consciously avoided at times. But we are nearing that time of year again when the air is crisp and fills my chest with dread. My mind starts to drift places that I typically don't allow it to stray. And there is something that has been on my mind since Monday, July 22nd...

When Ellie died, my life changed forever. In fact, the second Ellie entered the PICU in critical condition, my perspective on everything instantly changed. It quickly became obvious that those who had not stood where we had did not understand. Most tried, but never really understood. I found great comfort in those who were on my side- The Other Side. 

The Other Side... On this side, a nurse has looked at you with incredibly sad, knowing eyes. A doctor has sighed before walking up to you to say the words that you will remember forever. On this side, you have had sleepless nights at the hospital and spent hours in prayer, begging for a miracle. You may have had a conversation with a serious man in a tie that ended up with you picking out a casket or burial spot for your loved one. On this side, you have walked back through your door wondering what the hell has just happened to your life.

It is hard on The Other Side- impossible at times. Suffocating, lonely, desperate and out of control. It is sad, full of regret and guilt. To me, I could almost see a physical wall between me and those who were not on The Other Side. Being on The Other Side is all consuming and it is blinding. It isn’t that you stop caring about those you once stood with, but you just can’t see past where you are at now.
The wall never completely goes away, but I think, over time, it becomes more transparent. You get glimpses of what is going on over there and sometimes remember what it was like before the wall. You remember that there are loved ones still over and maybe, you understand that it hasn’t been easy for them either. It is hard on them having you on The Other Side…


On the evening of Monday, July 22nd, 2013, Dave and I were powering through another dinner with the kids. Life here was our normal. Kids throwing food on the floor, demanding more fruit and Dave and I were looking forward to bedtime! We had no idea that we were about to cross over to The Other Side of The Other Side.

Right at the end of dinner, Dave’s phone rang. It was the call no one ever wants…
Our brother-in-law, Travis, and one year old nephew, Layton had been in a bad car accident. All we knew was that they were on their way to the trauma hospital and Dave’s sister, Chrissy, was on their way to meet them. We made plans for my mom to come sit with your kids after they were in bed so we could go down there. Over the next hour, we got confusing bits of information from various people but it became obvious that the accident was much worse than we assumed…
Travis and Layton had been on their way home, when a man fleeing the police, driving down the wrong side of the road, ran a red light and broadsided them. Both were air-lifted to the hospital and emergency personal at the scene were certain that Travis would not make it to the hospital. Layton had a small brain bleed in one ventricle and a bruise on his temple. Travis had a larger brain bleed, a collapsed lung, broken ride, large facial laceration and internal bleeding. Both were intubated and sedated in the Trauma ICU when we arrived.

From the beginning, the doctors were pretty sure Layton would be just fine. And he was. Within a week and a half, he was out of the hospital and mostly back to himself. I have no doubt that during that car accident, his cousin Ellie, laid down right over the top of him. It is a miracle that this beautiful, beautiful boy survived with such few injuries.
At the time of the accident, Chrissy was seven months pregnant. And there were times during those first couple days, when we weren’t sure if that baby would ever get to meet his Daddy or at least the Daddy that the rest of us knew. Conversations were had about survival, catastrophic brain damage, long term care…. It was devastating. It was shocking, heart-breaking and mind numbing. In an instant, the rug was pulled out from all of us. In a split second, everything changed.

As I stood alone in my nephew’s room, next to his crib, holding his hand, I listened to the nurse in the next room explain Travis’ injuries to his wife, parents, grandparents and sisters. I thought about my sister in law Chrissy, and I was sick for her. I knew how I felt as the sister in law to Travis and aunt to Layton. I couldn’t imagine how horrible this was for her. To be seven months pregnant and have your one year old intubated in the ICU and your husband- your support and other half- in the room next door with life threatening injuries, is way more stress than one person should ever have. It was tragic and unfair…

It was there in that quiet room, standing next to my unconscious nephew, that it hit me- this is what it feels like to be on The Other Side of The Other Side. This beautiful, innocent family that we love so much was suffering and hurting, and we were powerless to help them. There wasn’t one thing we could do to make it better. I didn’t have words to make it not hurt so much and I couldn’t do anything to make it go away. We couldn’t make the doctors stop telling her about all the bad things that happened to her family and we couldn’t erase the vision of her son and husband lying in hospital beds from her memory. And when everything was “calm” for the night, we got to go home to our kids, together, who were safe and sound in their beds, and leave Chrissy keeping vigil at her boys’ side.

We were sad, angry, anxiety-ridden and shocked. We hurt for Travis, for sweet little Layton and for Chrissy. We wanted it all to go away. We were sad for not being able to be at the hospital with our family every moment… In these moments, I began to understand how our friends and family felt when Ellie was sick, and after she passed, and when Levi was shortly hospitalized for “meningitis.” They not only hurt for themselves, but for our children and for us. They wanted to make it better, make it go away, yet they were powerless. They were left to hand out hugs and bring bottles of wine, all the while knowing it wasn’t enough. They were grieving for themselves, and for us. They too, had sadness, anger and pain. It wasn’t the same as mine, but just as real.

As I’ve said before, I have very little recollection of many aspects of being in the hospital with Ellie, and the few days after she died. And for that, I am extremely grateful. I most certainly have aspects of PTSD, and can’t imagine how it would be if I had to carry around memories of everything that happened. One thing I don’t remember is how our friends and families were notified when it came time to say good-bye. And I don’t want to know. It might be selfish, but I don’t want to know how it all went down. I don’t want to know how they felt at her funeral, how they felt carrying her small casket or standing at her graveside. I don’t want to know, and I am so grateful that no one has forced that on me. I’m not sure I could handle it. I feel like I can hardly handle my own grief- I think it would kill me to know how hurt our loved ones were and still are.
But being on The Other Side of The Other Side has reminded me just how much our families and friends went through when Ellie died and again when Levi got “sick.” It reminded me that they too were traumatized and forever changed. They dealt with all of that while standing by us while we drowned in our grief. And for that, I am forever grateful. I’m thankful they had the strength to endure it and eternally sorry that they had too. Because if I learned one thing this summer, it was that even though being on The Other Side is nearly impossible, it’s not easy on The Other Side of The Other Side either.


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Travis walked out of the hospital just over three weeks after the accident and graduated from outpatient therapy after just two weeks with minimal residual injury from the accident. He isn’t completely 100% yet, but he will get there. Less than two weeks ago, he was there by her side, when Chrissy gave birth to our new perfect and completely adorable nephew, Nash. Without a doubt, we witnessed a miracle this summer….
The second lesson I learned this summer- sometimes there are happy endings…

Sunday, May 12, 2013

Happy Mother's Day

Happy Mother's Day to the best moms we could ask for! We wouldn't have made it through this last year without you!



And to our wonderful Grandmas!

I am so thankful for the four perfect little people that made a Mommy!