Remembering Evan...

Hope wrote this beautiful poem about her little brother Evan today. She is such a sweet sister..and her poem reflects her heart.

In my heart for you is love.
In my heart there is still joy and cheers.
but now your up above.
its been 4 years.
This very day.
...since the last time i saw you.
I remember when we used the pacifier to play.
I remember when you just came home we all stuck to you like glue.
I miss your cute smile.
I never saw you walk.
My time to see you is a long while.
You couldn't even talk.
I miss you baby Evan
See you in heaven ♥

what grieving is like...

Grief is like life. Some days in life,  I get so overwhelmed with the all that needs to be done, I can't do much of anything.  I have had the same pile of clothes laying in my bedroom for about a month now. Each morning,  I find myself digging through the pile to find something to wear. Just like I tell my kids, it would probably only take me a few minutes to get this room organized and then I would feel so much better--but I get stuck and it all seems too overwhelming. And then some days, without much effort, everything gets done and there is time to play. Time to enjoy the moment.
Today is the 4 year anniversary of Evan's death. On other days, I remember his life. On this day, I remember his death. It is just the way it is. On this day, I carry a heaviness that can't be easily shaken. As the time goes by on the clock, I am reminded of exactly what was going on at the hospital 4 years ago. The air outside feels the same, the smell of July floods me with memories of this time in my life. I get overwhelmed.  I fight away the thought that I shouldn't be feeling this way. But, no matter what I tell myself, there is no shaking this feeling. And I guess I don't want it any other way.

Losing Evan was traumatic. But his death was a part of his life...and I don't want to lose the memories of any part of his life. I have seen babies born...it is such a miracle. I have been allowed to be there when my beautiful baby boy entered the gates of heaven...equally a miraculous moment. A miraculous moment that gets clouded by our loss...by our grief.

I look for new pictures of Evan to share with you...but there aren't any. There won't ever be. So, today I guess I am stuck under that cloud of sadness...the sunshine outside does not match the feeling I have. It was just as sunny on the day of Evan's death. I think it is one of the things I have learned through my grief...how sunshine and sadness are meant to coexist.


This is the story of the day that Evan died. I don't think I have shared it before:
 Evan was getting sick on the day preceding his death. He started on Tobi nebs--a strong antibiotic that is given in nebulizer form. We held him all evening because he was upset and not himself. We knew that we would bring him into the doctor in the morning if he had not turned the corner...but with a child on a ventilator and on site nursing care, the doctors felt we could handle the illness at home. We had two nurses working that night--one of them was being trained in to work with Evan.  When Mark and I went to sleep around 11 pm that night, we were exhausted from a very long day. I was worried--I had an uneasy feeling.  Just one week earlier, Evan's trach had dislodged and he had stopped breathing. He was unconscious and the nurse and I performed CPR on him. We were able to revive him rather quickly. Prior to Evan coming home, he had unexplained "blue spells" at the hospital. They later told us that they sent him home with us "tenuous at best."

Just about one hour after we went to sleep...we heard the alarms from Evan' room going off. This was not unusual with a child on a ventilator. Usually, they problem is taken care of immediately and the alarms subside. This time the alarms did not stop.  Soon after, the nurse started screaming  "parents...parents..." When I ran into the room, Evan was already unconscious. Mark called 911 and the experienced nurse and myself began CPR again. It was the same nurse that was working the week before. The paramedics arrived quickly and worked on Evan for 45 minutes in our home.
There was no room for us to be in the room with him.  Quickly, they had assigned us a police officer whose role was to assist us....he kept asking what he could do for us and I just wanted to know what was going on. But, by the look on the officers face, I didn't have to ask that question.

Finally, they brought Evan to Mercy Hospital only a mile from our home. I rode in the front of the ambulance while Mark called someone to come and watch the other children. When we arrived at Mercy, they frantically worked on him some more. Mark arrived about 15 minutes later and the doctor came out. He said that they were not able to get a heartbeat and it had been too long but they were still trying. Because Evan was still a foster child, I knew that we did not have authority to tell them to stop working on him. We knew that as a state ward, some one from the County would have to make any decisions regarding this. I told them that they would have to do what they needed to do because we had no authority to tell them to stop. As we were speaking, some one came out from the room (we still were not allowed to be with him) and said that they got a hearbeat..and they would be transferring him immediately to Mpls Children's Hospital--the hospital Evan had spent his whole first year at. 

God took care of so many details during this time. There had to have been more than 10 people in our home that night...McKenna and Kaden never woke up. Some of the kids were at camp and Tyler was on a missions trip in Mexico. Only Aaron, who shared a room with Evan was awake during the whole trauma.


When we arrived at Children's hospital, we were met by a doctor immediately. She told us that his blood work indicated that he would not survive. But time would tell. The morning was spent praying and comforting our precious son. His temperature was rising..his body was shutting down. He was hooked up to so many monitors that it was nearly impossible to hold him. We asked to hold him around 11:30am that day. As Mark held him in his arms, Evan's heart stopped. We did not immediately understand what was going on. There were no monitors beeping, no code blue called, no panicked people around. Instead, the nurse calmly said it was that we needed to lay him back down. The doctors came quickly and started compressions... the same doctors that had cared for him his whole life. And about 20 minutes later, Evan was free from all the tubes that had kept him alive his whole life. For the first time, we held our baby without any tubes..or monitors...and we started the process of saying goodbye...a process that is still not complete.

The hospital staff were compassionate as they walked us through the next hours. We had lots of time to spend with Evan. They made handprints on a paper that was large enough for each of the kids to place their handprint alongside of his. They were so kind and gracious to us as we grieved in the only way we knew how.
I remember one of the hardest things that day was to walk away from the hospital that day without our little boy. I was agonizing that moment when I would have to lay him down and walk away. And when we finally did, I had to go back just one more time...I just wasn't ready. And when I went back to the room, a saw the nursing picking him up with tears in her eyes...saying goodbye. I knew then that I could leave...

God's hand was so evident in all the little details of Evan's life, Evan's death and all the days afterward...it was abundantly clear to us that Evan's life had not been cut short. His life was meant to be exactly what it was...he needed to come home from that hospital and experience the love of a family here on earth. We needed to be touched and changed by this little boy in a way that only he could have changed us. God was and is in control...and we are forever grateful.