Grief…..Today (4 yrs later)

Grief.

I have experienced grief before in my life. Before my son passed away. I had experienced death of loved ones. Dear loved ones that lived in my home and I spent everyday with. But death of a child is so very different. Children aren’t supposed to die. Babies, especially, as they are just beginning their life. So while I may have experienced grief before, nothing could have prepared me for this grieving process.

My grief started the moment I knew there was a 1 in 10 chance that my baby had trisomy 18. While I was told over and over again that “nothing was wrong” and “not to worry”, I could not shake the feeling that everything was wrong and I would come to find out the feelings of anxiety and worry and hopelessness were just seedlings of what my grief would grow into later.

What I wish I could have truly understood back then was how much the grief never goes away. It changes ever so slightly, it might get less weepy, but it certainly doesn’t get less sad. The anxiety never left. The stages of grief just cycle, over and over again. I also learned that grief has very little to do with sadness. It’s a million emotions at once. I don’t think about him less or get over it more. I just get better at coping.

Anyone who has ever lost anyone they’ve loved will tell you that their life turns into a new normal. Daily actions are always accompanied by its new companion–grief. There is no going back to the person you were. They died with the loved one you lost. It’s not always a bad thing. I am grateful for the person I have grown into. I have more empathy and love. I am more patient and understanding. When people are having bad days, I truly wonder what else is going on in their life.

At times, I long for the old me. The one who didn’t know so much. The version of me that could blissfully walk through the baby section without anger or resentment.

The version who didn’t get awkward around “boy mom” talk. Who didn’t feel the need to argue that I am a boy mom too..but only to realize that the truth is I won’t ever know what it’s truly like to raise a boy.

Continuing to learn and navigate and cope my “new normal” will always be where I am in my grief. Riding the waves of ups and downs. The ups are so freeing–giving me glimpses of my old self–only to recognize how far I’ve traveled. The downs are brutal, realizing how much I hate the new normal I’m now forced to live in. Things that never used to be part of my life are now “normal”.

It’s normal for me and my husband to fantasize about what our 3.5 yr old Isaac would be like. I jump between usual 3 yr old antics and picturing my boy in wheelchair with feeding tubes severely handicapped.

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It’s normal for me to start sobbing in public places from a trigger that no one else catches and for me to hide those tears because I don’t want to talk about it.

It’s normal for me to still “after all this time” hate phrases like ” It was meant to be” “he was too special for this earth” “he only needed a body” “God only gives us what we can handle” ” 2 girls, I bet Dad wishes he had a boy” and other similar phrases.

It’s normal for my heart to absolutely shatter at the mere thought or mention of a friend, acquaintance or a news article speaking of someone losing a child or a baby or having a baby with detected abnormalities during ultrasounds. Sometimes the trigger hits me so hard I can’t even breath and it sends me into a panic attack.

It’s normal for me to feel like I don’t want to do anything new because it’s another thing that Isaac hasn’t experienced with us.

It’s normal for me to talk about my dead son while shopping for groceries, waiting in line, at doctors appointments, book clubs, church, girls nights and getting pedicures.

It’s also normal for it not to phase me–speaking as I would about any of my children, but the people I speaking with to be moved to tears and I find myself comforting them for the death of my child.

It’s normal for me to totally lose over something completely unrelated to the death of my son.

It’s normal for me to never feel like my family is complete. To feel guilty when I look at pictures of just the 4 of us.

It’s normal for me to feel resentful when people don’t include Isaac and yet don’t quite know what to say when they do ( I am always grateful though).

Yes, grief is weird. Normal is not normal. And yet grief has made the person I am today. I could go on stating hundreds of specific examples as well just as many general situations.

The truth is grief today is a whole lot like it was 4 years ago. With days where I am absolutely a mess and days when I am hopeful and full of faith. Most days it’s a little of both.

So where am I today? Today, I am grateful. Tired. Honest. Humble. Faithful. And hurting. Whenever I take this much time to ponder on my son and what he means to me, it always hurts. It doesn’t mean the hurt isn’t worth it, but my heart aches for him in a way that isn’t describable.

Today, like always, I miss him.

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Guest blogger-Rhiannon

What I wish I had known when I was experiencing a miscarriage:

There’s no ‘how to’ book when it comes to loss. It’s raw, heart searing, and messy. It’s holding your spouse as tight as you can while you both try and hold yourselves and each other together. It’s disheartening, especially when doctors can’t give you a straight answer. Its also so common.

I wish I had known that 1 in 4 people deal with this. I knew that the first 12 weeks in pregnancy were the most touch and go in regards to viability. What I didn’t know that losing two babies before that mark would be as gut wrenching as it was. How could I be so attached to something we had never seen before? We hadn’t heard a heartbeat, seen a sonogram, and had just told our family and friends.

I wish I had known that if I had reached out to those friends and family I would have been met with so many stories of the same thing, which would have comforted me I’m sure. In my darkest days, knowing that I wasn’t alone would have helped a lot.

I wish I had known that every June 24th and November 16th I would feel such a sad bittersweetness, and a yearning to know if what each of my babies would have looked like, had been named, how they would have grown. Would they have curly hair like me, would they be tall like their dad?

I wish I had known that years later, my heart would be torn that we don’t have sonogram photos of my two little lost babies. It’s hard to mourn them when I had nothing really to prove they were there except a few pregnancy tests, a few onesies, and a few weeks of morning sickness. Instead I made these tiles to keep their memory alive.

I wish I had known how hard it would be for me to answer when people say ‘how many kids do you have?’ It feels like a lie when I say ‘one’ when I have two that, although their time was short with me, doesn’t make them any less. They were here, they were real, they were loved, and they will be remembered forever.

~~Rhiannon Wilburn

2 miscarried angels

1 Rainbow baby

Purpose

It’s been awhile since I’ve written on here. When I started this blog I had no idea how long it would last. I had hoped I’d write after Isaac was born, but mostly I wanted to write as long as I had a purpose. I never wanted to feel like I had to write. This month is Pregnancy and infant loss awareness month. For the month of October many of my fellow angel moms participate in different challenges to celebrate their angels, bring awareness and have a place to talk. Last year was the first time I did something like that and this year I’m participating in something called “capture your grief”. From the “Capture your Grief” website…

Welcome to Capture Your Grief 2018. For those of you who are new, Capture Your Grief is a World Wide Community Project designed to help bereaved parents mindfully document their grief experience and discover other ways, perspectives and ideas on healing after the death of a baby or child of any age or gestation. While this project is mainly for bereaved parents, anyone who has been touched by such a loss is welcome to join in.

I’ll be posting blog posts and social media posts everyday this month following the prompts provided by this website.

Today is “Purpose”. What is MY purpose in doing this project.

For me, I don’t talk or write about Isaac as much as I used to. Even though I still think about daily and have moments where I am sobbing because I miss him so much. Those don’t go away. But October gives me permission to unabashedly speak about him everyday and celebrate the tiny life he lived. I’m joining a community of other women who feel as I do, that they need a space to let all their feelings out. When it’s ok to talk about our angels until we’re blue in the face. That’s why I do this.

I also hope that because I am so open and share, that others feel comfortable talking too. I hope this month to feature a variety of women who have suffered a loss. You can hear their stories and gain strength from some amazing women!

We could all do with a little more empathy. Hopefully as you read others experiences, it opens your heart to understanding. It allows you to see others in a new way. It allows you love more deeply.

Happy Birthday 3 years old

Dear Isaac,

HAPPY BIRTHDAY my sweet little boy. Just mentioning you brings a smile to my face and I wish you were here so we could all celebrate together. I miss you so much. Everyone misses you here. We all mention you (independently) often. You are never far from our thoughts and hearts.

Birthday Sign hanging in our front room for your birthday
Happy Birthday Sign for Dad’s birthday that we left up for your birthday too. 🙂 

I started a letter to you last night, but it was turning into a very sad post. It’s hard because I miss you so much. I don’t take the time to write and blog as often as I used to for several reasons and so when I do, sometimes all the emotions and feelings I’ve been feeling for months come pouring out. While I find it important to express them, I wanted your birthday letter to be uplifting and positive.

I can’t believe you’d be THREE!!! At this point you’d be older than Audrey was when you were born. You’d be getting a strong hold on speaking and maybe we’d just be beginning to understand you.

A Chocolate cupcake for my boy! 

Haha. You’d have favorite toys and I’m sure I’d have a clear idea of what kind of birthday cake you’d want, although Audrey is convinced that your favorite flavor is Chocolate. (Not a guess that is unfounded, considering who your father is….hehe).

So much has happened in the last year. Most importantly of all that, I wish you were here to meet and play with your new baby sister. I am sure you got plenty of time with her before she was born, but I didn’t get to witness it and it’s a mama’s pure joy to get to see her children interact with each other. We also live so much closer to family now and I’d love to see you interacting with your cousins. It’s now your 3rd birthday and we have celebrated your birth in 4 different states. Arizona (where you were born), Utah (your first birthday), Texas (your second birthday) and now Colorado. I still can’t believe it’s been 3 years since I last held you in my arms. In someways it feels like just yesterday and in other ways it feels like a lifetime ago. I still miss you terribly. I still have moments of such intense grief that the world feels like its spinning out of control. Most of the time I am alone when these moments happen, but sometimes it catches me in public or group settings. At least we’ll be here next year as well and for the first time since you were born, we will have stayed in one place longer than a year. Each place we move it’s hard to start all over again with people that don’t know you and your story. I speak about you openly, but that doesn’t always mean that people get it right away. There are still so many times when the lack of your presence just hurts. Recently I was at the store shopping with Emilyn and Audrey and a very nice older gentleman was in front of us. He was friendly and playing with Audrey and making her laugh. He looked at my car full of girly things and he says “2 girls, eh? I wonder how Dad feels about that.” With tone and body language it was clear that he was commenting on the lack of sons. He was just being friendly, so I felt no need to put him in his place, so I just responded. “Daddy loves it. He loves nothing more than all his children”.

Audrey (age 5), Emilyn (5 1/2 months)

The man smiled warmly and continued to make Audrey smile.  This experience isn’t the first or last. It’s one of the reasons I can not go a day without feeling your absence. I get comments all.the.time. about 2 little girls. And if you were here, you’d get comments about being smashed between 2 little girls.

The point is, no matter how much time has passed, our family just does not feel complete without you. The other day I was desperate for your touch. I wanted to hold and snuggle you. I wanted to kiss your face and see how you’ve changed. I wanted to hear your thoughts and concerns. Each Sunday I teach the children at church songs. I teach children ages 18 months-11yrs old. I think of you as I teach the younger children, wondering how you might be singing along.

I wish I could celebrate today by making your favorite meal or wearing your favorite color or listening to your favorite song. Doing those things helps me when I miss my daddy. I’m still working on not being jealous of other angel moms that got to spend any amount of time with their children no matter if it was 15 mins to 100 years, but I am so grateful for the time I got to keep you in my belly. You were safe and happy there. Maybe we’ll eat all of the things I craved while I was pregnant with you. Haha!!!! I did finally get your little shelf set up, so now I can look often at things that remind me of you.

Your ‘Molly Bear’ (with your exact weight) and the Shadow Box I made with a lot of your little keepsakes. 

Well, we don’t have any big plans today. We plan to get a cake and sing you Happy Birthday. Considering that you might be starting pre-school this year, I was considering buying a book or something to donate to the school that Audrey goes to. Somehow I intend to still participate in as many “firsts” as I can with you.

Normally your dad and I like to visit the temple on your birthday, but since it’s closed on Mondays we went a couple weeks ago while your dad was off work. We went and participated in sealings. It was a great reminder that our family will be together eventually and for the rest of eternity.

I hope the Heavens can open a little bit today and I can feel your presence. Happy Birthday sweet boy! Your family misses you!

Love forever!

Your mama. 💕

Love letter

Dear Isaac,

I can’t believe it’s been this long since I have written you a letter. It’s been a very very hard couple years since you touched our lives. While I believe that you are so aware of everything that happens in our family, it also feels good to write to you about events and feelings.

I’ve been participating in a challenge this month in honor of Pregnacy and Infant Loss awareness month.

 Each day is a different theme or part of your story. Each day I share a little part of my heat as it relates to you and our family. The support I have received as I’ve done this has been humbling. So many have shared their own stories with me.  It truly breaks my heart that there are so many that have lost a baby. The pain of losing a child is beyond comprehension and it’s not something that anyone can truly understand unless they have walked that path. Parents shouldn’t have to bury their children—no matter what age.

Today the theme was “Love Letter”. The theme is given and it’s up to us participating how we interpret it. I decided that “Love Letter” meant a letter to you my sweet boy.

I honestly can say that not a day goes by when I don’t think, ponder or long for you. Especially now with your new baby sister. It sometimes feels weird how much she reminds me of you, even though I shouldn’t know anything about you. I find myself looking at her in my arms and I have to convince myself that it’s not you. I have found that I need to put a pretty little bow on Emilyn as often as possible as a physical and visual trigger that it’s not you I’m holding.

 I was warned that bringing a baby home after leaving one at the hospital is a surreal experience and mine has been no different. Emilyn is a constant reminder that I lost you. Her first smile, made me wonder about your smile. Her bright blue eyes have been curious what color yours are, her calm, chill personality is such the opposite of your big sister and makes me wonder how you fit in the mix. Nursing Emilyn reminds me of all the milk you didn’t get to drink, but that I made for you. Even with all the triggers, Emilyn is a gift. She is such a blessing to our family. And honestly, I am doing so much better with my grief than I used to be. I have come to terms with your death in a way that can only be explained spiritually. I feel so close to you and I am grateful that God has not closed that door between us.

You are always so present in our family. We all talk about you openly. Even your daddy can’t talk about his family without including you. We both always say we have 3  children. 

 
We imagine you with us when we talk about future family vacations. We joke about what a handful a three of you would be together. We see other children your age and picture you. Sometimes our fantasies include your disorder and other times you have a perfect functioning body. Sometimes we think of you with smiles and laughter and sometimes your memory brings tears.

No matter when or how, your memory is always welcome. 

 I hope you have enjoyed your recent time with my Daddy. I miss him terribly and grieving him has only compounded my pain in losing you. Without the testimony of my Savior, I would feel so lost in it all. I’m not sure I can even express how much  losing you both has affected me.

 Well, I’m not sure how much of a “Love Letter” this turned out to be, at least by general terms, but I can say that each word I have written is only written out of deep love for you.

I miss you beyond words. I love you beyond expression and I can’t wait to see and hold you again.

Love always,

Your Mama

You’ll miss it when they’re older. 

Sooooo many times young mamas are told “You’ll miss these days when they get older” or “treasure the time when they are young”. You know what I mean. I know these comments are always well intentioned, but I never understood them. 

My oldest was and still is a needy and high maintenance baby and child. She’s hard to truly explain unless you have one like her, and if you have one like her, you know exactly what I mean. The newborn stage with her was mis.er.able. It was hard and overwhelming, and because of what she was like I got a lot of well meaning advice from friends. It was rough for everyone. When she turned one I wanted to throw myself a party for actually surviving her first year. (Little did I know….haha). 

I don’t miss those days.

At.all. 

When I lost Isaac, all of sudden I longed for those newborn baby days. Desperate to see him smile for the first time. Wondering about his eyes. Daydreaming about how I would juggle a toddler and another (completely different) high need baby. I wanted to soothe his cries and walk with him at 2am. I actually felt like I wanted lose sleep over his wellbeing and just hold him again, dang it! I wanted to feel his weight on my chest. 

I started to get a glimpse of how and why people treasure the baby days. 

Now with my new sweet little rainbow baby, I just rocked her to sleep after changing 3 poopy diapers in 10 mins and a scream fest just before that. As I sit, rocking her, snuggling her close, and feeling her nod off into a peaceful sleep, I realize I want to make time stand still. With her mostly likely being our last, I can’t get enough of these baby days. Somehow I’m associating all of Isaac’s firsts with hers, and seeing her fly through them leaves me aching for more—not another baby, but more of the what I have. More time with my sweet babies. 

And now I start to understand a little of what people mean when they say they long for the baby days.  So I’m going to sit here and relish the time I have with the baby asleep in my arms—treasuring the time I have with her when she’s young, because I might miss it when she’s older.  

 

Triggers

When I was pregnant with Isaac it made sense to write. It was like I couldn’t do anything else. I had to write to get out my feelings so I could survive. While I have distinct memories of feeling sick to my stomach after I posted an extremely personal post–worried at the reactions I would get–for the most part, I also didn’t care. I wrote for me.

I remember thinking durning that time that when I was pregnant again I would write all the time talking about what I was feeling and experiencing with going through a pregnancy after loss.

Then life happened and well everything normal in my world suddenly went abnormal. I’d never felt more alone and helpless–well–ever.  I also had never felt more judged.With Isaac, most everyone was supportive and loving–but when my grief and pain started to go on too long, suddenly my openness and candidness felt like open wounds not healed enough to be given to people to have opinions about. I fought spiritual battles, physical battles, emotional battles and mental battles. I felt attacked and weak on every level, with little to no allies or resources. I wasn’t strong enough to fight for friendships as well.

So when I got pregnant, I wasn’t sure how to talk about this news. What would people think? What were people going to say? I wasn’t even sure how I felt about it, let alone be ready to hear how everyone else felt about it. I’ve written probably 2-3 blog posts about this pregnancy, but I haven’t felt comfortable or ready to share them. It’s like people can understand the grief of losing a child, but can’t wrap their head around the years that happen afterwards–let alone the anxiety that comes with a pregnancy after loss.

More and more I have realized at how lonely the road of grief is. Perhaps not lonely at first, but because it is such a long journey, most people aren’t capable of the endurance needed to continue on.

I’m not bitter towards anyone–I would be lying if I said I haven’t been deeply hurt at times, but I can understand why this is a journey I take alone–sometimes with my husband–but mostly by myself as he must walk his own grief stricken path.

But what I have come to understand more than anything else is that the openness I once used to share so freely is now filtered. I second guess almost everything I say and do. I worry constantly about how my actions are being taken and feel I have to justify almost everything. Some may just chalk that up to my increased anxiety–and perhaps that’s true, but for me I know that it’s more than that.

This brings me, through a very short story version of the last few years, to my present day and present pregnancy. Doctors that don’t seem to understand when I question them when they tell me “everything looks great” or tell me that pains or struggles are “normal pregnancy symptoms”. The hardest part about going through something traumatic is dealing with the aftershocks and triggers that follow.

Being pregnant is the biggest trigger.

Ultrasounds, Dr. appointments, Iv’s, ER visits, baby kicks, blood tests, pregnancy clothes, baby clothes, baby department, other babies, and back pain.

I recently posted on my Facebook about back pain I was having and if it was normal. It wasn’t a symptom I remembered when carrying Audrey—but yet, I can hardly remember anything from the pregnancy except that I was so sick I could hardly function.  Every memory I have of being pregnant with Audrey was overwritten by my pregnancy with Isaac.

The last time I remembered having back pain that felt similar to this pain was when I went into pre-term labor at 23 weeks and was carried off in ambulance. Only to wait for hours before being told I had kidney stones, but then finally being told in broken English “You will have this baby tonight”. Miraculously–and by an act of God, I did not lose Isaac that night and went on to carry him another 10 weeks. You can read all about that night here.

As I read though the very thoughtful responses to my Facebook post, I realized that maybe one or two people understand why the back pain was so concerning to me. It dawned on me that I had not really asked the questions I was really wondering at all.

Is the back pain I’m experiencing early labor? Am I losing my baby? Am I crazy? When I realized that I was 22 weeks–almost the exact same gestation as I was with Isaac, I nearly lost it.

When I asked if the back pain was normal, what I was really looking for was reassurance  that this baby didn’t have something wrong with her and that the intense pain in my back wouldn’t turn into contractions and that I wasn’t going to end up in the ER. Going to the ER is not a comfort to me, it’s a trigger.

Triggers are terrible things. I guess in someways it’s our body’s way of protecting us. Desperate to not have to go through that hurt again, so when a trigger hits–we run and duct for cover no matter how crazy we look and seem to others.

While I might have been able to be more open about that in the past, I find that I am keeping more and more to myself. I don’t talk about triggers or hard experiences anymore. I don’t talk about ER visits or debilitating pain. I don’t talk about crisis of faith or my road back after struggling so much. I don’t talk about how it felt having to have my husband come home early from Deployment to take care of me. I don’t talk about the rumors that circulated about me being suicidal. I just don’t talk anymore. I don’t open up.

Maybe I should. Maybe I am.

All I know, that tonight, writing became necessary again. It became a way for me to process and move forward. Tonight I decided that I have the faith to open up–trying not to fear the consequences of showing my heart.