Monday, September 24, 2012

I Really Wanted to Keep Him

I've been just so very sad lately. So very, very sad. The tears fall so frequently. I miss him. My heart is so broken. I just really, really, really wanted to keep him. I don't want to make a new life without him in it. I don't want to keep trying to move forward. I just want to have him back. How can I do that?

Oh, that's right...I can't.

As I've mentioned before, I'm not a big fan of showing my emotions in front of people. It's too personal. I can put on a brave face when people are around. I can talk about him and say that I'm sad, but I hate to cry when they can see. So it's hard to be around people for a long time. It's tiring. When they leave, I cry. I sob my heart out for my precious little guy.

Oh, I miss him. I replay the 10 minutes I got with him over and over again. I would do the whole thing over again just to have those 10 minutes one more time. Just to touch his soft head and hold his tiny little hand. To look in his eyes and be able to say "I love you!" Oh, my poor heart...I just really wanted to keep him.

Most days I just do the things I need to do. I make it thought each day because it's all I can do. I cry every night for my missing boy. It doesn't matter how tired I am, he is all I can think of once my head hits the pillow. Every night it's the same. I cry because I made it though one more day without him. I miss him.

I've been trying lately to keep busy. I've been working on the event coming up in October. I've made a new blog to try to help others like us. Keeping busy helps my mind occupied, but it doesn't stop my heart from hurting for him.

I just really wanted to keep him.

*this video was taken just before the nurse came in to take hand molds. That's why Bryan is not holding him.

All That Love Can Do

I've started another blog for families carrying a baby or babies with a fatal diagnosis. It's called All That Love Can Do and you can find it here. Please share it with anyone you know who is carrying a sick baby, or who is dealing with this type of loss.

I'm also open to suggestions of resources/blogs/links that would be helpful. If you know of any, please let me know.


Friday, September 21, 2012

Cast Away

I've been thinking a lot about how much life changes after you lose a baby. One really hard part is that so many - really, most - people just don't get it. So many well-intentioned people saying and doing so many really insensitive and hurtful things in an attempt to "fix it" or relate to me.

It brings to mind the movie, Cast Away, with Tom Hanks. Much like his character, my life changed in an instant and I was unprepared. And also like him, I have no choice but to make the most of what I have left and just keep moving forward. When you lose everything, you find yourself doing things you never thought you'd do. For him, it was befriending a volleyball (Wilson!). For me, it's carrying around (and sobbing into) a 4lb, 8oz stuffed bunny.

You also find help from people you may not even know. For him, it was the person awaiting the package from the angel-wing ranch. He never gave up hope of delivering it, intact. For me, it's the other babyloss mama's (some I've never met and probably never will meet), reaching back from their place along their own journey to lend a hand or offer an encouraging and understanding word. These strangers give something that most others can't: hope and true help.

Just like him, I find myself with a life I don't want and never expected. This man spent years building a new life on the island; one most people could never understand or relate to. In my grief, I'm building a new life on my own "island" of sorts, one most other people can never relate to or understand as well. Just like him, you do what you have to survive.

And then, when he is finally back to the "real world" (a place he no longer belongs,) there are so many many people who simply can not possibly understand. The people - for him - who serve seafood at his homecoming dinner (dummies). The people - for me - who compare Samuel's death to the loss of their 98-year-old grandmother or who insist on talking endlessly about every person they know with a new baby. (also dummies).

Sidebar: Why do people not understand that I DO NOT want to know about every happy mama with her precious new baby?!? It hurts me to the bottom of my soul that I didn't get to keep him. Why make me hear over and over again that "everyone else" gets to keep their babies???

(Ok, back to the subject at hand).

Just like his friends, people want so badly for me to "get back to normal". The intentions are good.( As his friend said, "tomorrow we work on bringing you back from the dead". If only it were so easy. Then maybe people would stop trying to "fix it".) But what they will never understand is that "normal" no longer exists for me (and him). Just like him trying to come back to a world that he no longer feels apart of, I no longer fit into this life, as most know it. My entire belief system has shifted. I've been through something not many others can relate to. I guess it's true: if it hasn't happened to you, you just can't understand. (Although most people like to think they do - while simultaneously saying the worst possible thing - *sigh*). Just like the character in the movie, I have to re-learn how to exist.

When you realize you have to still be apart of this world, you realize you can't be who you once were. Your hopes and dreams and goals for your life are no longer an option. You have to start over. So you do what you have to do. You take it one day at a time, you closely guard whom you allow into your life and you become endlessly grateful for the handful of people who "get it".

You move forward.

It's all you can do.

Sunday, September 16, 2012

I'll Carry You With Me

October is the National Pregnancy and Infant Loss Remembrance month. (See www.october for more info). Lots of groups schedule events on October 15th to remember those families affected by pregnancy and infant loss. When I noticed on Still Standing that there were no Minnesota events scheduled, I wrote my sweet friend Erin to see if she'd like to help me organize one. She quickly agreed, and we set to work imagining a beautiful event to honor our sweet babies.
We decided to hold it outside, with trees covered in white lights, hot cider served around a huge bonfire, and lots of candlelight. We're going to have a special ceremony with music and readings and a time for each family to speak the name of their precious baby(ies). We want it to be a beautiful and meaningful time for grieving families to feel the love and support of those who understand the tremendous weight of such a tragic loss. We want each baby to be honored and remembered with love. Our theme is based on the poem by E.E. Cummings, I carry your heart with me [I carry it in my heart]. We want it to be an evening of light and love <3

I'll Carry You With Me: A Pregnancy and Infant Loss Rememberance Event

I like having something to work on. Something that will be a special day to honor Samuel's life. But it's also hard because I wish with all my heart that no such event was needed. I wish I could trade it all for him.

My sweet boy...I miss him.

I was just thinking today about how big he would be getting. No more newborn clothes for that boy...he'd be a big boy now. Most of the clothes I had ready for him (you know the ones all washed and hung so neatly in his closet) would be too small now, I bet.

I just really, really, really miss him. What else can I say?

Ok, I digressed for a moment. (I miss him). Back to the event.

Any family in the MN metro area who has suffered the loss of a baby due to miscarriage, ectopic pregnancy, stillbirth, neonatal death, or SIDS is invited to participate, along with any friends or family who would like to support them as well.

Since the actual day happens to fall on a Monday this year, we decided to hold it on Sunday, the 14th, instead. Samuel's 6th-month birthday. Oh my, that may be an emotional day! (and by "may be" I mean absolutely-positively will be). There is something nice about knowing I'll have something special to do for him that day, but as I sit to write this I'm freaking out just thinking of it! Oh my goodness...half a year since he's been gone...I'm not sure I can handle that. *deep breath* I need to just keep going. One day at a time.

If you'd like to know more, please click here. Everyone is welcome!
If you'd like to participate,  but are unable to attend, you can light a candle in your baby(ies) honor at 7pm on October 15th. Leave it burning for at least an hour and imagine how our sweet little ones looking down from heaven would see the light and feel our love. 
One last thing: I miss him <3

Friday, September 14, 2012

Five Months

Today marks five months. I don't even know what to say. I don't want there to be such a thing as five months without him. I'm crabby and frustrated today. I don't want to talk about "five months", I don't want to live "five months".  I couldn't sleep at all last night. Not one bit. Just dazed insomnia all night. Nope, I'm not going to do way... five months is too long.  But, despite my best efforts, here we are: five months. Just like every other day, there is a huge gaping hole in my life. One where a now five-month-old should be.

I always have this alternate version of life running through my head. One where he lived and is growing and a part of our lives as he should have been. I imagine on a regular basis the "what ifs" of each day. Today he would be banging spoons and toys on the tray of his highchair while I make supper. Today he would be scooting around on the floor after the kitty. Today he would be smiling and filling our lives with joy and laughter. I like those thoughts, but it always ends the same; he's gone and I miss him. I didn't get to keep him. So, instead of the sounds of toys being crashed against whatever surface most easily accessible, it's the empty sounds of a sad house. No toys, no baby, no happiness. (Oh wait...there are toys, lots of them. They - just like everything else baby related - are just collecting dust.)

Bryan got a new puzzle (a belated birthday present) the other day (he loves them, me - not so much). Last night he asked me if I wanted to help (no, but sure) and I said, "I bet Samuel would have wanted to 'help' ". We both laughed as we pictured our little guy grabbing the pieces and pushing them all around. Then one (or a few) would go right in his mouth. Oh, it hurts. I miss him. Laughter turns to tears all the time around our house.

I like to have this alternate version of life where everything worked out. I like to have him live on in that version because then at least someone (the fictional version of me) get's to keep him. At least that version of life is happy.

So what can I say about five months? Nothing new. He's gone, I'm sad, and life is hard. We miss our Samuel today and every day.

Happy five-months, my little bunny <3. Mama and daddy miss you so very much! We can't wait to be with you again. I hope you're getting lots of kisses today my sweet boy. I would do anything on earth to be the one giving them! We love you forever!


Thursday, September 13, 2012

September 13th, 2011

A few days prior, I thought I'd started my period. I told Bryan we'd have to try again next month. (You see, we'd been trying to get pregnant for a few months). I left the house at 5:30pm to go to my office and set up for the monthly support group I ran. After it was done, I came home to find Bryan making dinner (Tuesdays are his night to cook). We just chatted a bit and then I went to change and get ready for supper. At some point, I really don't know when, it occurred to me that my "period" was so very light this time around. Hmmm... maybe I should take a test? So I went to the bathroom, took a test and set it on the floor to process. In the time it took me to wash up, I looked down and saw two perfect and bright pink lines. Oh my goodness!! Oh my goodness!! We're going to have a baby!!

Immediately, my brain began searching its databases for great ideas on how I could tell Bryan the news. Fancy dinner out, a gift box with the test inside, a "I love my daddy" outfit, and so on. But I couldn't wait. This was special news and nothing more was needed than to just say it. I set the test back down and, with excitement and a huge smile I was trying to hide, I called into the kitchen, "Bryan, can you come here please?" He walked in to the dining room and looked at me. I pulled out a chair and said, "I need you to sit down." I walked back into the bathroom. Then, without saying anything, and now able to smile again with him safely out of view, I picked up the test and carried it out to him. I set it down and let him look. He looked and then looked up at me. "We're going to have a baby!!" I told him, now openly excited. "Oh my goodness! I'm going to be a daddy!" huge smiles from him then lots of hugging, laughing and excitement.

So much happiness! So much excitement! So much love for the precious new life!

September 13th, 2011  -- So naive, so happy, so full of love and hope. So much joy.

September 13th, 2012 -- So much sadness and grief. Loss of innocence, loss of a precious life, loss of hope and loss of joy.

Today brings memories of a day we'll cherish forever <3, but it also brings a bitterness for what is lost.

September 13th, 2011 -- One of my favorite days of all time.

September 13th, 2012 -- Just another day in my nightmare.

Monday, September 10, 2012

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 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 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.

Tuesday, September 4, 2012

Rabbit Hole

Life is just so hard right now. I think all the numbing effects of shock are finally completely gone. All that's left is sadness. and pain. and sorrow. and a deep "missing him constantly" emotion I don't know how to fully describe. I nearly had another nervous breakdown this weekend. Just how much can one person cry and scream and rage and hurt without it actually destroying them? I'll let you know when I get there.

Bryan and I had planned to get away for the weekend. Nothing big, just going away. I like going away. It's nice to be in new places and to feel like you have some say in what goes on in your life. We were all set to go Friday after he got home from work, but - as I'm now seeing is a pattern in my life - it didn't work out for us to go. Bryan pulled something in his neck and was really hurting. So, instead of getting away, I got him medicine and icy-hot and rubbed his neck. Then, he napped on the couch with a heating pad and I went downstairs to sulk and begin unpacking. I had been really looking forward to getting away. I was so very disappointed. (Obviously, it was no one's fault he pulled his neck). It was just one more instance of life not being mine to control. I fumed all night long as I couldn't sleep anyway (what else is new) and by the next morning I was in full "I hate this life and I'm going to run away" mode. I decided I was going away. End of sentence. I stomped around throwing things back in the suitcase. Bryan, who was better but not 100% yet, came to see what I was up to. I raged about how much I hate our life and this house and everything else and how I was leaving. He wondered where I was going and I told him the truth: I have no idea. I just started throwing things in the car. He, in his ever-calm and loving way just said, "I'm coming with you. I won't let  you go without me". So I impatiently yet appreciatively (I love that he loves me even when I'm a mess) waited while he re-packed his things and locked up the house. We climbed in the car and set off to no where - anywhere - together. (Looking back - this was Saturday. I'm no good on Saturdays). There is not much more to tell about our trip. We really didn't do anything. Just drove around, ate out, talked and simply got out of the house for a few days.

I'm just so lost. I don't know what to do or where to go. I don't want to be around anyone except Bryan. I am just so sad and that's all there is to it.

I miss him.

I think it's all been more traumatizing then I've realized. I try to sleep and the night he died just plays over and over and over in my mind. I guess my mind is trying to find the place where we did something wrong. The place to note what we could do differently in the future.  But there is no "place". So it'll just play again and again and again. I hate trying to go to sleep.

When I do eventually fall asleep, I dream about people with babies all around me. It's always something like that. Tons of woman holding babies and me, all alone, just there watching them. Always me as the outsider. Always them with the babies.

The other night I dreamed about a person we know who's currently pregnant. It was horrible. She had the baby - a boy of course - and we were babysitting him. Then, when she came to pick him up, she was pregnant again and telling us how excited she was. It was horrible.

All these dreams are the same. I don't get what everyone else has. Yep, that's my life.


Today, I found a movie called Rabbit Hole on Netflix. It's about a couple who lost their only son. I watched it and had so many "yep, I totally know what that's like" moments. The story is based on a play written by David Lindsay-Abaire.  Obviously, he knows exactly what it feels like to lose your only child. It openly speaks to the emotions: numbness, anger, rage, sadness, hurt, obsession, panic, outrage, contempt, and so many other things. It deals with so many of the common situations you find yourself in. Going to the store, dealing with a pregnancy in the family, people telling you to just have another baby, trying to be "normal" again, the stupid crap people say about "God's will" and such. (Baking endless pies because you just need something - anything - to do with your hands). It's all there. It shows what it's like to try to live in the world that doesn't understand. He get's it. If you want to try to understand what it's like, or if you've been through a loss, I recommend it.