My Sunshine

This past weekend was the Children's Remembrance Celebration at the Mayo Clinic. It was a very emotional day. It was a day to honor and remember the babies and children who died while receiving care at the hospitals in Rochester. It was a day to celebrate their lives. I'm so very glad we attended. My parents, my sisters, my aunt Lea and Bryan's mom attended with us. We really appreciated their travel time and support on a hard but important day.

As soon as we got there (and really, as we drove that all-too-familiar route) the weight of it all hit me hard and I just wanted to leave. But I'm so glad we stayed. It's always hard to remember all those trips and all the stress and horrible memories of the life-altering reason we had been there. It's the last place our son lived. It was also hard to realize just how many families are hurting and missing their sweet little ones. There are so many many kids who die way way way before their time. I will hold those kids in my heart with the families who are missing them every day of their lives. <3

Each family was given a spot on a long line of tables to set up special items and memorabilia for their sweet child. It was so horrible to see just how many tables of items were set up. Beautiful, precious, special, dear lives summed up with items. It was a way to pay tribute to these short but oh so meaningful lives. Here is Samuel's table.

These are the items we brought. The  books are the ones we read most often to him. The doggie is the one he had with him at the hospital. The bunny is our "Samuel bunny" (the one that weighs 4lbs, 8oz) and the blankie is the one I made for him. It snuggled him up during his time at the hospital. The red framed art is a gift from my aunt Nancy. It reads "Those we hold in our arms for a little while...we hold in our hearts forever. Samuel Evan Fredrickson, April 14, 2012". It's a precious gift. The butterfly/beach photo is a gift from Erin, created by Carly Marie. Then we had his main photo book and the canvass of his footprints.

The photo frame is one that scrolls through digital photos. We had a slide-show of a bunch of our favorites. The other photo is my little snuggle bug. (The one I use to visualize a much-desired snuggle-fest with my sweet little guy.)

The blocks are something I ordered from Somewhere Over the Rainbow on Etsy.com. I love them! They have special things about him written on the each side.

The ceremony was very special. Some of the hospital staff spoke of how impactful the lives of these children are to them. They grieve too. (On a related note, here is a documentary of this very topic.) When a father of a 4-year old boy who died of cancer spoke, I just lost it. He was so accurate in talking about all the lost hopes and dreams you have for your child. I really like how he said that - five years out - he's more ok now, but still missing his son. He even lost it a few times during his speech. I like knowing those two things can coexist; you can miss them forever (and I know I will), and also be more "ok". It was very meaningful.

After the ceremony, there was a time to walk around the look at the tables and have some refreshments. It was a very special time to see people stop and spend time looking at Samuel's items. It gives his life meaning when other people care.

Something very special for me was that one of Samuel's nurses - the one who traveled with him from Mankato to Rochester in the ambulance - was there to honor his life. That was so meaningful to me. I was able to talk with her and hear about her memory of that night. I was able to hug her and thank her for caring for my precious baby. I could tell he was special to her. I will never forget her. (Forgive my appearance -lots of tears that day! Plus I look perpetually tired now...oh well... it's how I feel; tired and sad all the time).

When it was over, Bryan and I were able to go visit the NICU. I got to see the rooms and fill in the image of the story of his last moments. It was emotional for me and Bryan. It was the first time being back to the place he held and loved on his son. I can't imagine what it was like to see it again. The nurse was very kind and showed me many of the things that would have been involved in his care. She even gave me the tiny blood pressure cuff and sticky monitoring sensors he would have had on. She also gave us the shampoo used to bathe him (I wanted to know what he would have smelled like after his bath), and one of the handmade quilts they use in the NICU. (I know it's hard to see, but the sensors are about the size of a quarter - soo tiny).

The final gift was a copy of the sign they would have hung on his door. 

What a beautiful and horrible day of emotions. I'm so glad we went. It was so hard, but so good.

Thank you to those who attended with us. It meant a lot.

During the ceremony, the song You are my Sunshine was sung. I've always loved that song. It got me to thinking about how many people sing that song and never realize what it's truly about. I would imagine most people think only of the chorus:

You are my sunshine, my only sunshine
you make me happy, when skies are grey
you'll never know dear, how much I love you
Please don't take my sunshine away!

It seems like such a sweet song to sing over a beloved baby. But, in reality, this song is about loss. It's a song of love and desperation and sadness. Trying to hold on to something slipping away.

The first verse (one that many people probably never even realize is part of the song) is this:

The other night, dear, as I lay sleeping, 
I dreamed I held you in my arms.
When I awoke, dear, I was mistaken,
 so I hung my head and cried. 

Oh my goodness...can I related to those words. How bitter are those moments when you "realize" once again that your love is gone. The love you feel as you dream of being with them, then the deep ache in your heart of them missing...it is intense.

I think the fact that so many people only sing the chorus is indicative of how people feel about death - especially infant/child death. Probably for self-preservation reasons, we only focus on the good, the lyrics of sunshine and happiness. This is where platitudes come in, "he's with God now", or "he's in a better place" and other empty words like that). We gloss over the pain in the loss. We ignore the true emotions of the situation and try to fill it in with meaningless pleasantries. There is no worse grief than the loss of a child. (I'm not just saying that. It's listed as such on rankings of grief in the medical/psychology world). Why then, do so many people just sweep it under the rug? Why do they try to rationalize something so meaningless? (Probably self-preservation. We don't want to realize how often children can - and do, just ask all the families there on Saturday - die).

You never really know who your friends are until you lose a child. So many people just ignore me now. I can run into someone who knows (and who knows I know they know) and not say a word about it. I understand it's hard to know what to say - heck, I don't know what to say! - but not saying anything is like pretending it never happened. Samuel is my heart and soul. To not mention him at all - even if it's just to say "I'm so sorry" - it very hurtful. (There are also those very special people to DO reach out to me. Please know, from the bottom of my heart, it means so much!)

And then there are the people who try to say the "thing" that will make it better; to explain it away with a few words. I can't stand that. The very fact Samuel was sick to begin with is senseless. There is no reason, medical or spiritual (despite what everyone wants to say to stay sane) and his death is a tragedy.

Yesterday, someone said "God could have healed him and it sucks that he didn't". Wow! Where do I even begin with this statement?? (First of all, let me just say I don't really believe people mean to hurt me. In fact, I really believe people want to help. But please, please, please, think about what you're saying to me!) To say that God could have healed him but didn't is so horribly painful. What can I make of that? That there is some magical "reason" why he wasn't healed? That I wasn't worthy of a healing? That God didn't care about us enough to step in?? If it's true that God could have healed him but chose not to, then the only conclusion I can come to is that He doesn't love me. For no loving God would stand ideally by and watch while I desperately cried out for help, that only He could give, but still allow Samuel to die. God was Samuel's only hope. There was nothing medicine could do. If God knew the deep overwhelming all-encompassing pain and despair that would come from Samuel's death, and just stood by and allowed it to happen when he could have easily stopped it all, then he can not possible love me. There is nothing more to say about that. (I realize the "Christian" thing  to say is that He has a purpose, but that's disgusting. If His purposes are fulfilled through horrible pain and sadness, he is not a God I can believe in). If it's true that it was His purpose for me to hurt for the rest of my life, then what does that say about his love for me? And what's so great about everyone who get's to keep their babies? If you really think about this, I would hope you'd realize that the only logical conclusion is that God had no ability to heal him, and that, instead, He is just as sad and horrified with the outcome as we are. That is the only way I can go on believing in Him.

Secondly, to say "that sucks" to explain the death of our precious baby boy is to callously oversimplify something absolutely horrific and tragic. It "sucks" when a buckle breaks on your purse and everything spills out. It "sucks" when you forget to pack something you wanted on your trip. It "sucks" when you lose your keys. Those are things that "suck". It doesn't not "suck" that he died. It's the most horrible, gut-wrenching and forever life-altering event of my existence. When he died, my entire world ended as I knew it. The loss of him is the loss of my hopes and dreams, my heart and soul, my joy and hope. To sum it up with the words "that sucks" is to gloss over the enormity of it. I clearly know this was not a thought-out phrase, but I need it to be knows how offensive it was to read those words.

I hope that in writing this, I'm getting the point across that the death of a child is noting to make light of. It's nothing that will ever go away or anything you'll "get over". Every single day for the rest of my life, I will miss my baby boy. Every single day, I will wonder what could have been.

I am forever changed.

My sunshine is gone.

If you know someone who lost a child, please, please speak their name(s) to the parents. Don't try to fix or explain it. Just acknowledge it for what it is, heartbreaking and terrible. The best words are these: "What a tragedy they are missing from your life. I'm so very sorry you have to live without them." Nothing more is needed. (Especially nothing about how it's God's will!)

I know it's hard to know what to do/say. I get it that anything/everything can be taken the wrong way. So keep it simple and loving. And whenever possible, talk about what his or her life meant to you. Or ask about the special memories the parents have. Attend events that honor the baby/child's life. Do things in their memory. Just listen and give lots of hugs. A broken heart is a heavy load to carry.

It's hard enough to go through this; even harder to feel alone or ignored.