Book: Room of Marvels

On the recommendation of a friend, Erin, I read the book, Room of Marvels, by James Bryan Smith.

 

I liked a lot of it. It's the story of a man who suffers three tragic losses within a very short time. He loses his best friend, his mother and his young daughter. In the story, he is able to go to heaven and see some wonderful things that help him on his journey with grief. Since I am very skeptical of anyone who claims to have actually gone to heaven and then come back to tell their tale, I really liked that the author plainly states the heaven-encounter portion of the story has come only from his imagination. There are no false pretenses. (He actually did lose his friend, mother and daughter). The story helps me form a picture of what it might be like for Samuel. It's very similar in many ways to the book The Shack. If you have lost a precious loved one, it's a good story to read.

Here are some lines that really resinated with me:

"...The world no longer feels safe - good and reliable. Since [the losses] the world has never felt stable to me."

"All loses - friends, parents, children - have the same thing in common. What we really miss is exactly the thing we can never get."

"Human suffering raises almost intolerable problems. If God were good, he would wish to make his creatures perfectly happy, and if God were almighty, he would be able to do what he wished. Therefore, when his people suffer, we must conclude that God lacks either goodness, or power, or both".

"If God allowed it, then as far as I'm concerned, he did it".

"Tell me about your prayer life, Tim"
"There is not much to tell"
"Why?"
*"There was a time when I prayed. I used to believe that prayer made a difference. But then I prayed to God in my deepest time of need. I begged God to heal our daughter, and he didn't...I haven't prayed since".

"Christians don't get angry, I thought. So I bottled it and tried to be pious, saying things like 'God is in control. My daughter is now in heaven, I will one day see her again.' All true, but it did not take away the pain... or the anger". 

"A lot of us are taught to believe in some kind of religious karma: 'Do good deeds, be religious, and then God will reward you with success.' We let this idea get so deep in our souls that we try to control everything in our lives. Sometimes we even hear this from the pulpits. But it's an illusion. You can't control your life."

"Just remember this...The church is not a club for saints; it's a fellowship of sinners. All too often we shoot our wounded because we are all pretending to be holy". 

Good stuff. The line with the * above sums up my life right now. When you need something desperately, you sincerely and faithfully believe it's able to be given, but then don't get it, there is just no point in asking for help anymore. Your hope is gone. Prayer seems meaningless.

The line about God's goodness/power also sums up my struggle with God's identity. He can no longer be who I thought He was. 

If you get a chance to read it, I'd love to hear what you think.

A Really Bad Weekend

This past weekend was just so bad. Just when I think I'm moving a bit forward, a huge wave of grief crashes in to me and leaves me gasping and doing my best just to hold on. It's crazy how you can go right back to zero so fast. The pain and emotions were just as raw as the first few weeks after Samuel died. So much heartache, so much anger, so much confusion and so much contempt. As Bryan so astutely noticed a few months ago, weekends are the hardest for me. While this may seem obvious, since Samuel died on a Saturday, I didn't put it together until he told me. (Yes, I know, duh). So most every weekend is bad for me. This one, especially.

I guess it all started when I was innocently trying to check out with my groceries. I had made it through the entire store without seeing any babies so I thought I was in the clear. But then, at the checkout, I turn around and right smack in front of me is my nemesis: a teenage mom with a baby boy. UGH. Heart stops for a moment. I quickly try to pretend I'm super interested in the contents of my wallet. But there she is, cooing at him and rocking him just feet away from me. And she doesn't move. The person I thought she was with left and she just stayed. I shoved everything in bags as quickly as possible and tried to get the heck outta there. But guess what? Magically, at that moment, for no apparent reason, she was now leaving too. She walked out behind me. No grocery bags, no walking with someone with a cart, just leaving right then for no reason. (Or, in my head, just there to make my life miserable). If you've never lost a baby, you may not get this reaction. You might wonder why it's so hard for me. Just know: it is. All the anger, all the pain, all the emotions just welled up and I got in the car and sobbed. I'm so angry. I'm so sad. I hate this new life of mine. I want to hold Samuel and coo at him and rock him. Why does the irresponsible teenager get what I should have?

So that's where it began, but nothing seemed to make it better. It was just one thing after another all weekend long. I sobbed and yelled and cried and grumbled. It was rough. I have so many questions with no answers and I just can't get over them. Why us and not all the horrible parents in the world? Why is it that every other person in our families just shoots out babies like it's nothing and we can't even have one to keep? Why is EVERY woman on earth pregnant right now? Why did I put all my faith in something God never promised? WHY DID THIS HAPPEN?? Why is it me who has to change and not everyone else? How about this: if you're pregnant or have a baby, YOU have to stay home with the curtains drawn. I'll go out in the world and you have to hide. How about that? Instead, it's me. I can't go anywhere, watch any show, read anything on FB, listen to any radio program, see any magazines, etc, etc, etc. Babies are everywhere.

Bryan just holds me tight and keeps saying it, "we'll be ok someday". Where is this elusive "someday"? For me, it's the day I die and go to hold my sweet boy forever. This horrible life and world go away forever and I never feel sad again. That's my someday.

This morning, like so many Mondays,  some of the clouds part again and I feel a little better. Still so sad without him- I'll always be sad without him - but not so much of the overwhelming emotions. I went for a counseling appointment and that helped. I just have to keep going. Sometimes it's minute by minute, but I just keep going.

Someday, we'll be ok.

Bryan's Birthday

I've lost my sense of time. It moves not in a line, but in a squiggly mess. Some days are so long, some just shoot by, some are just gone from my memory forever. I recently had this moment of realization that summer is done and it's back to school time. Honestly, I can't account for my summer. It's lost in a daze of sadness and numbed existence. I can know the days are passing without really connecting to them at all.

Suddenly, yesterday, it was Bryan's birthday. Normally, I like to go all out for birthdays. I usually get him multiple presents, plan a super fun night out with fiends and do my best to give him an amazing day to remember. Yesterday, when I woke up, I realized I had done nothing. I love him and I want to celebrate him. But right now any celebrating seems so empty, so meaningless. I pictured a small little smiley guy with a little birthday hat on his head, watching his daddy blow out the candles on his cake. I pictured us at the store, me explaining to him that "it's daddy's birthday!" and we need to get him lots of gifts. I pictured us all together, so happy, as we celebrated all that life had brought us in the past year. But, for the millionth time, I realized those things will never be. As I thought about everything that's happened since Bryan's last birthday, I realized something so amazing to consider: Samuel's entire lifetime occurred within the months between Bryan's last birthday and this. Wow...when they say a lot can happen in a year, they really mean it. Samuel was conceived after Bryan's birthday last year. He grew and was born and then died all before this one. For some reason, I just can't get over that. Age 33 - no baby, age 34 - baby, age 35 - no baby again. What craziness. It also made me realize just how wonderful and horrible and happy and sad and so long and so short this past year has been. To quote the Selah song, it's been "such a short time, such a long road". I'm just so tired. It's been a long road to say the least. And now our journey on the new path of life without Samuel had begun and it's so hard. All this is to say, I didn't do anything for his birthday and there it was, upon us.

I told him I would make him whatever he wanted for breakfast. He asked for eggs and bacon. I set to making it and realized we have no bacon. Man, I can't even make him what he wants. I went to him with the heavy load of guilt on my shoulders (guilt for not taking very good care of him - especially on his birthday) and he, with his easy-going attitude, said it was no problem. To add to this, I had an early-morning counseling appointment, so I couldn't even spend the morning with him.

After my appointment, helpful as usual, I realized I could get my act together and still try to make it a good day for him. I went to get him balloons, I got him a few small gifts (he said he really didn't want anything) and  - thank goodness for pastry chefs - I got him some special cakes from one of our favorite restaurants. I even made dinner reservations at our secret spot and found showtimes for the Bourne movie he's been wanting to see. Then, I made him a yummy lunch. When he came home for lunch, it may have actually appeared that I was capable of doing things. 

But then, during lunch, I just cried and cried. I want Samuel here with us so much. I hate doing anything/everything without him. I miss him. I miss him. I miss him. Bryan held me and we talked about how much we miss him. It was a sorry excuse for a birthday lunch. We are both not ok without our little guy. He pulled himself together and went back to work, and I just went to take a nap. (Sometimes, it's all I can do).

I woke up in time to try to get myself presentable for a nice dinner out. I actually put on some make-up and did my hair. It was odd to see myself put together. That person in the mirror has not looked back at me for a LONG time. Normally, I just look so tired and sad and old. I think I aged ten years in the last one. We both made an effort and enjoyed a nice steak dinner. We decided not to see the movie; we were both worn out from dinner.

It was a happy day to celebrate Bryan's life, but a sad day to remember all that is missing. It was hard for me. I really hope there was some semblance of goodness for Bryan.

When August began, I realized we are about to walk the road of anniversaries. The date his life began, the day we knew he was there, the first ultrasound and so on and so on up to the anniversary of his death. *sigh* it's going to be a long walk. We are going to try to just keep taking it one day at a time. It's all we can do. Special days are so hard because they are not special like they should be. Life is not what it should be. We have no choice but to keep moving forward.

Here's to you, Bryan, my love forever. Happy Birthday!

My love for you is immeasurable
My respect for you immense...

You're in my heart, you're in my soul
You'll be my breath should I grow old
You are my lover, you're my best friend
You're in my soul

August 19th, Day of Hope

Yesterday was the Day of Hope. It was a day to remember babies lost. It was a day to say these lives were/are meaningful and we still miss them every day. I had been wanting to do something special in Samuel's memory, so I came up with two ideas: 1. I had people who wanted to participate send me notes about how Samuel had touched their lives. 2. I organized a small get together of mama's who had lost a baby/babies to join with me in creating something beautiful to remember their lost loves. (My BFF Jaimi, her daughters Emma and Abby, a dear new friend Erin, from Mourning into Dancing, and her son Jackson were able to join us).  I also invited my family to honor Samuel with us. We met at a place called Color Me Mine, to paint ceramic items to keep in our homes as a reminder of the sweet babies we all miss so much. Honestly, Bryan and I don't get out much these days, so it was really nice to actually get dressed up (that is to say, more than every-day clothes) and go out in to the "real world".  We went to brunch at one of our favorite spots, then met up with everyone. It was a really nice day. I asked Erin to bring her Hannah and Charlie Bears (click here for more info), and I brought my Samuel Bunny and some photos to set on the table as a reminder of who was missing that day. My mom and dad brought us a special frame with me, Bryan and Samuel. He looked so much like us as babies! (Apparently, my uncle Jim had this great idea...Thanks, Jim!)

We all worked on our projects together, we talked about the precious babies we all miss so much, and we had a good time. The crazy part is that the woman who was helping us from Color Me Mine, told us that her mother had lost a baby boy at 31 weeks gestation. His name is Gabriel and I wrote his name on my heart when she told me about him. Another little one, gone too soon. It's amazing how many people are affected by miscarriage, stillbirth, and baby loss. I wish it were not so.

Here are some photos from our little painting party. (We should have taken a group photo...duh!)

 

After painting, Bryan and I went out to a nice dinner at Cheesecake Factory. We haven't gone out for a long time. It was good, but as always, hard. A table for two should be a table for three.

I'm so glad we did something to commemorate this day. On the drive home (and, let's be honest, for much of the evening after we got home,) I cried for my little Samuel. I'm trying the best I can to make good out of so much bad, but the truth is I don't want any of this. I just want him.I just miss him so very much. I love him forever, my sweet little bunny.

As for the letters from friends, it's a lot to share. Please click here to read them. I really can't say how special these are to me. Thank you so much to everyone who participated. They mean so much <3

"Peace of mind"

We went to the genetics counselor last week. The trip to the Mayo Clinic in Rochester was very emotional for me. The last time I made that trip, I was in labor - not active, mind you (blah) - and heading to give birth. The trip brought back all the memories of the horrible trips we've made there. The horrific, anxiety-filled trips where we wondered if that would be the day we found out Samuel had died. It was a hard trip for me. Well, here we are, it's over and they were right. I could just throw up, cry and scream all at once. We finally made it there and I cried. If you want to feel like a freak of nature, just schedule a genetics appointment. If you see in black and white everything you may pass down to a baby, you may not be so quick to jump into parenthood. Man, people get sick a lot. Prior to the appointment, I had gotten as complete of a history as I could from both Bryan's parents and mine. We walked into the appointment with the list of issues in-hand and all I could think was how does any baby live through pregnancy?

We went through everything I had listed and talked for a while with the doctor and the genetics counselor. The main outcome of the meeting: Samuel died for no reason. There is no (known) cause, it "just happens some times". Does it give me comfort? (You know, the peace of mind I was promised.) Nope. Not at all. To me, if something happened once, it can happen again. Especially if you don't know why it happend. I have nothing to change, nothing to avoid doing. I just cross my fingers and hope for the best. *sigh* I would try praying for a baby to be well, but we've all seen how much good that does...

Here are some highlights from the report they sent to us:
1. Apparently, I'm very pleasant. Mrs. Fredrickson, a very pleasant woman, was referred to us...
2. Our families didn't cause this. There was no family history to suggest a genetic etiology to the couple's unfortunate loss. 
3. We didn't cause this. There was nothing the couple could have done that would have caused or prevented the baby from having PUV. 
4. It can happen again. There are case reports of patient's experiencing more than one pregnancy with PUV, however, this is rare. The couple's recurrence rick is low, but may be slightly higher than the general population. Yep, you read that right. That super rare-unlikely, non-genetic "thing" that happened to Samuel can and DOES happen again to some couple. I guess I'll just go lie down and die somewhere. I can't do this again.

So that "peace of mind" I was promised? It's just like everything else right now; a bunch of crap. When something "super rare" happens to you, and then you're told you have a higher (albeit slightly higher) risk of it happening again in the future, you just go ahead and assume you're going to have only sick babies. If it happened before for no reason, then it can happen again for no reason. I just don't even know what to do. I guess we are just freaks of nature. For some reason everyone else in our families can have tons of perfectly healthy kids but we are mutants. I'm back to wanting to just go to sleep for the next few years. Maybe Armageddon could happen soon?

The genetics counselor said it right, You won't feel safe until you're holding a healthy baby in your arms. Yep, that's true. But the question is this: How on earth do we ever get to the point when we're willing to do this all over again for the chance we might get a healthy baby? I'm not sure. I guess having babies is for everyone else.

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On a different note:
Tomorrow is the Day of Hope. A day to remember lost pregnancies and babies. If you'd like to help us honor Samuel's life, please write a note - even if it's just a few words - on how his story has impacted your life, and email it to RememberingSamuelEvan@gmail.com. (You may also simply comment on this post). I'll be compiling them and will write out some of them on this blog tomorrow. Thank you to those of you who have already commented. It does my mama's heart good to know how special my little guy was to you. Thank you so very much!

Four Months, Part II

Well, there is not much to say about today. Bryan and I obviously apologized to each other for our crab-fest this morning. I really didn't know what to do today. I spent some time with his pictures. He is so precious to me. I miss him more than I can say. I love him endlessly. I remember looking in his little brown eyes and telling him that I loved him so much. I hope he still knows that it's true.

 My sweet brown-eyed boy

I love this picture because, even though you can't see Samuel, you can see how much Bryan and I love him. And you can see how happy we were to have him with us. 

I spent the day cleaning the house from top to bottom, it gave me something to do. Everything is sparkling clean, but who really cares. The sounds of a baby are missing from the air. The busy boy rolling around with his toys is missing from the rooms. There is just clean and empty space all around us. This is not how life should be right now. I don't know what else to say about today. Today, just like every day until I'm with him again, is just not right. He is missing and we are so aware of it.

Samuel, 
Mama is missing you so much, my love. I'm wishing I could see your drooling smile, and hear your babbles. I'm wishing to see you watch the kitties with awe about what on earth those furry things are. I'm wishing I could snuggle you close and breathe you in. Me and daddy wondered tonight if you might be laughing. Maybe you would sit in your chair and bang your toys so loud just because it's fun. We would give anything to be with you now. We love you endlessly. You are our special boy, now and forever. 

We love you, 
Mama and Daddy

Four Months

Where do I even begin...it's four months. The word that comes to mind is "yuck". With each passing month, we just get farther away from the day I saw his sweet little face in person. I don't like that. I wanted to see his sweet little face every day. I miss him so much <3.

Here's how I wanted today to go:
Wake up, go into Samuel's room, see his sweet little smiley face poking up over the crib rails. Maybe be a little "good morning" sound from him. "Good morning my love! How's my sweet boy? Do you know what today is? It's your four-month birthday!! You are getting SO BIG! Who's my big boy today!?" Huge smiles and claps from him. Big snuggles and kisses. So much happiness.

Instead, here is what I got. (yuck)

beep-beep, beep-beep. (Bryan's alarm). click. (Bryan hitting the snooze button). Me to myself: Uh-oh, that's not good. (Whenever Bryan hits the snooze button, it's not a good sign, he normally get's right up). He must not have gotten enough sleep. *sigh* It's Samuel's four-month birthday. Oh, my poor heart...I miss him so much. 10 minutes of just lying there, thinking about him. beep-beep, beep-beep...wait for it...click. Oh, no! Not twice with the snooze button...it's going to be a bad morning for him. 10 more minutes of thinking about Samuel. beep-beep, beep-beep. Me, "Morning hon, it's Samuel's birthday today." (My attempt to get him up). "Yeah..." He slowly climbs out of bed. "What should we do today?" Him, "I don't know". I head downstairs. What should I do...hmm...I know, I'll clean out the fridge. (Why? Don't know. What else is there to do with my life...nothing.) Bryan walks by on his way to the bathroom. "Hon, could you help me move the fridge quick?" (Oh, now that I say it again, I can see why he got irritated). "What? Why? I need to get going." Me, "Please, quick, it's really heavy". Him, "Fine". Pulls out the fridge. So I go to work cleaning the vents mopping the floor under the fridge and wiping down the sides and top. Then I pull out all the drawers, clean them, wipe down the inside walls and shelves, then put everything back. Then I went through everything inside, organizing and tossing. Ok, done. Now what. Bryan tromps up the stairs. Me, "What do you want for breakfast?" Bryan, in a crabby voice, "I don't have time". He's a crabby guy this morning. "Oh no, sorry, let me get you some banana bread." I butter him a couple slices and put them in a baggie for him to eat on the way to work. Since Tuesday is trash/recycling day, he get's the bin to bring outside. Then, I had the audacity to try to hand him the baggie of bread. "My hands are all dirty, I can't take it" (crabby-voiced husband). Me, "I'll take it out, you take this and go". Crabby husband, "No, I'll do it". Grumble-grumble (ok, he didn't grumble, but his face implied it). Me, now equally-crabby-voiced, "Bryan, I'll do it. Just take this and go". I pulled the bin from his hands. "Fine!" He runs downstairs to wash his hands, then takes the bag and opens the door to go. Me, "I don't need this from you today". Him, silence. Crabby-faced, he walks out. Me, now upset that I have to deal with his crabbiness, grabs the stupid (yes, it's now stupid) bin and stomps it outside. Bryan drives away without even looking at me. I go inside to write about how crappy this morning had been and it's only 8:30am. yuck. 

I guess we are both just really sad that Samuel is gone and that life is just so bad without him. I would guess that Bryan's bad morning was due to his sadness. I would guess we were both on edge because life is just so wrong. What on earth is going on?! I just want to shout it out...why on earth did this happen!?! We could be so happy now, but instead all we have is crap. yuck.

I'd love more than anything to post a photo of Samuel's precious four-month-old face, but I don't get to know that face. So, instead, here's my newly cleaned out fridge. yuck. (Yep, my life is pointless now. No baby, but clean fridge - what a bunch of crap).

Since I'm going to hold out hope that today could turn around a bit, I'm going to stop writing now and come back to this later. Today is going to be one of those two-posts-in-one-day days.

Off to think about my sweet little boy...

Remembering Samuel Evan

First some things I've been doing, then on to an important idea (see below*). 

I've been finding myself constantly looking for ways to incorporate Samuel into our lives. I like having things around me that remind me of him (not that I wouldn't be thinking of him anyway...) I have something in almost every room that speaks of his life. He was and always will be a big part of our lives. He is our son and we love him. 

I found a beautiful Swarovski crystal heart to hang from my mirror in the car. I love it! It's clear when you first look at it (it reminds me of his birthstone - diamond), but when the light hits it, it turns this beautiful blue (perfect for my beautiful baby boy). I love that I have a constant reminder of him while I head out to face a world I no longer fit into. It sends light all around the car. It's perfect!

(I wish the picture captured just how beautiful it is...)

I also found some super cute bunny buttons. I'm not sure yet how I'm going to use them, but for heaven's sake...they are so cute! (I put one on the cork board in the office next to some of his photos. So cute for my little bunny<3).

_______________________________________________

Now, for my idea:

*On the Project Heal blog, she talks about the August 19th Day of Hope. She says, "August 19^th is a day to break down the walls of society that keep pregnancy, infant and child loss a hush hush subject. People view the death of a baby as just a sad thing that happened. These babies that die are not sad things that happen. They are people, much loved and wanted children. They are brothers, sisters, nieces, nephews, grandsons and granddaughters. August 19^th is about openly speaking about these children and celebrating their short lives.”

I have been thinking, how can we celebrate Samuel's life on this Day of Hope? There are so many ways... here is my best idea (so far):

Remembering Samuel Evan

Will you join me in celebrating the life of our son? If Samuel's life has touched yours in some way, will you share? Please email me at RememberingSamuelEvan@gmail.com and tell me how Samuel's life/story has impacted you. Even if it's just a few words, I'd love to hear! (I plan to print them out and keep them in a special book just for him). Then, on August 19th, I'll share some of them on this site for others to read. (If you'd prefer, you may also simply leave a comment on this post.)

Please also share your baby's story. 

Together, let's remember those we love and miss on August 19th. <3

Sometimes I wonder...

What is it like to have a normal pregnancy?

What would it be like to not hear the words, "you're baby is not going to live"'?

What would it feel like to just simply enjoy the pregnancy... not always wonder if this will be the day he dies.

What is it like to not spend every day, every hour, every second of your pregnancy begging God to save your son's life?

What is it like to go to ultrasound appointments with excitement about seeing your love, not with anxiety and fear over what you may see (or not see)?

What is it like to just buy things for your baby knowing full well he will wear them/use them not secretly thinking they will never be his?

What is it like to not wonder if he is hurting?

What is it like to spend all day talking to him just because you love him, and not also because you know this may be your last time to say anything to him?

What would it be like to go through labor and delivery and get to hold your son after all that work?

What is it like to take your baby home with you when you leave the hospital?

What is it like to be so happy and exhausted for weeks after he is born?

What would it be like to keep the baby you love and want so much?

Now that this has happened, my innocence is lost.
So, what's it like to have a normal pregnancy: I'll never know.