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:
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


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.


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.