To my Friends & Family

Today I want to say thank you to all of my friends, family, coworkers, etc. who have offered/continue to offer support to me as I walk through this deep abyss of sadness. Immediately after my loss I was warned to be prepared for hurtful comments and, even worse, friends who would withdraw and say nothing at all. I am so happy to say my friends and family have made it very clear they are available to me if I need them.

My friends never act awkward when I talk about Madelyn. In fact, some of them have even shared their own memories of her with me. One friend who often visited while I was in the hospital recently told me that she missed Madelyn too, and she talked of her own memories of hearing her heart beating on the monitors. I was so warmed by this, I didn’t now how to respond. But it meant the world to me to know my friend cared about Madelyn and felt connected to her.

I can’t say I’ve never received a comment that was less than comforting. However, these have been rare, and I know they were unintentional. The people who said these things were trying to help in the only way they knew how, and I appreciate that they cared enough to say anything at all.

I feel blessed to have friends and family who loved Madelyn and who aren’t afraid to let me share my memories of her. She is my baby, and I love talking about her. Even though she isn’t here with me, I am still the proud mommy who thinks she has the best baby in the world. Sometimes it’s difficult to talk about her, but it’s also healing. Please don’t think if I get teary-eyed it is because you said something wrong, and please don’t hastily try to change the subject in an attempt to distract me. If tears fill my eyes, it’s not because I don’t want to talk about her – it’s because I’m missing her.

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On another matter, please say a prayer for my friend Wendy. Someone from another part of the country sent her to my blog because our situations were so similar. It so happened that she was my neighbor in the hospital! She had not been there long when I left. Anyway, her baby is scheduled to enter this world on Tuesday November 3, and they have the same concerns we did about Madelyn. Please pray that God will send her strength as her delivery approaches, that her c-section will go smoothly, and most of all that her sweet baby will be ok.

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Happy 2 Month Birthday, Madelyn

I once again stand amazed that so much time has passed. My life feels like it has passed in a blur since the night Madelyn was born. As always, we miss you baby girl.

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Reconciling my faith with my loss has been one of the hardest parts of Madelyn’s death. I knew God was capable of healing my baby and could have allowed her to stay with us. But He didn’t. On the other hand, I believe God is a God of love and not cruelty, and I don’t believe it was His will to hurt us or take her away from us. However, He could have healed her and did not. And that is where my faith has taken the biggest blow. If He could have, why didn’t He? Miracles happen everyday. Why not for Madelyn? I’ll probably never know the answer, and if God came to my house, sat on my couch, and tried to explain the why to me (assuming there is one), I am 99.9% sure it wouldn’t satisfy me. Scratch that – I’m 100% sure it wouldn’t satisfy me.

I’ll never find meaning in her much-too-soon death. However, I know every life has purpose. Even further, I believe the shortest life has every bit as much purpose as the longest life. It takes some people 100 years to fulfill their life’s mission. It took Madelyn 34 weeks and a day of pregnancy and about an hour and a half of life outside the womb to fulfill hers.

Madelyn was given to Nathan and I for a reason. We were chosen to carry her that her purpose might be fulfilled. I believe it is our responsibility to make sure her life was not in vain.

I may never realize the full impact Madelyn had on this world. What I do know is that she gave my own life new meaning and purpose, and I am so thankful she was given to us.

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Video tribute to Madelyn

This video was created for Madelyn by Malory of Every Life Has a Story. Because she is all too familiar with the pain of losing a child (she lost her sweet baby Janessa on 5/14/09), she donates her time and talent to making videos for other bereaved parents to keep as a memorial to their children in heaven. We will always cherish this video made in honor of Madelyn, and we are so appreciative of Malory for it.

Madelyn Rebecca Mohr from Every Life Has A Story

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Remembering

Lately I’ve been so afraid of forgetting. On one hand, I know I will never forget. Nathan and I were just talking today about how so many days of our life seem so blurry, but we can remember every single detail of the night Madelyn was born. I remember it better than I remember yesterday. Even still, there are those times when everything feels so surreal, and I have to remind myself that it really happened. I am a mother. I have a daughter. Her name is Madelyn. She was unable to remain in this world with me. She went to heaven. I am a mother, and my baby is in a grave, enclosed in a casket instead of my arms.

I have talked of this before, this feeling of how unreal everything can seem at times. These feelings scare me. What if one day I wake up and forget, even for a brief moment? I also wonder if others will forget her. Will my precious little girl eventually fade from their memories?

I know my fear has no truth behind it. I’ll never forget her, even for a second. I will always carry her with me, until I have breathed my own last breath and am reunited with her. She is a part of me. She is my baby. I could forget her no more than any other mother could forget her living children. But the thought of forgetting is so frightening.

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Madelyn’s Grave

Madelyn’s headstone came in recently:  we saw it for the first time today.  I’m so glad her grave is finally marked.  I just wish we never had to bury her in the first place.  Babies don’t belong in cemeteries.

We love you, sweet baby girl.

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Thankful

Sometimes I get so focused on what I don’t have, I forget to be thankful for what I do have. In spite of everything I have endured, I know there is much about which I can be thankful.

My loss is a very large part of who I am. It has changed me. I now know what it is like to have a story that is hidden to those who pass me on the street. I’m no longer the average person wondering through life without a care in the world. I understand grief, and grief leaves its mark. I also understand motherhood, which is also transforming. However, my loss and my pain are not the only things that define me. There are things that even the deepest grief cannot take away.

The other day I was with Nathan, and the realization struck that no matter what happens, or where this life takes us, we have God and we have each other. Because of this, I know everything will be ok. It doesn’t mean I’ll never feel anger or pain, or that I’ll ever completely recover. But I know my husband and I will get through it. We will ultimately accept whatever my test results say, and we will be happy together no matter where they lead us. For this, I am thankful. It doesn’t change what I want or what I’m missing, but as much as it felt like it, our lives did not end on the day of our loss. We have each other, and we have Madelyn in our hearts.

I like to put my iPod on “random”, because I have such a wide variety of music and it leaves me guessing as to what song will be next. I was listening to it this way, and the song “Lost” by Michael Buble started playing. For those of you who haven’t heard it, it’s a beautiful song – I recommend finding it and listening to it. It reminded me that I am not alone in my sadness.

Lost

I can’t believe it’s over
I watched the whole thing fall
And I never saw the writing that was on the wall
If I’d only knew
The days were slipping past
That the good things never last
That you were crying

Summer turned to winter
And the snow it turned to rain
And the rain turned into tears upon your face
I hardly recognized the girl you are today
And I hope it’s not too late
It’s not too late

‘Cause you are not alone
I’m always there with you
And we’ll get lost together
Till the light comes pouring through
‘Cause when you feel like you’re done
And the darkness has won
Babe, you’re not lost
When your worlds crashing down
And you can’t bear the thought
I said, babe, you’re not lost

Life can show no mercy
It can tear your soul apart
It can make you feel like you’ve gone crazy
But you’re not
Things have seemed to change
There’s one thing that’s still the same
In my heart you have remained
And we can fly fly fly away

‘Cause you are not alone
And I am there with you
And we’ll get lost together
Till the light comes pouring through
‘Cause when you feel like you’re done
And the darkness has won
Babe, you’re not lost
When the worlds crashing down
And you can not bear the cross
I said, baby, you’re not lost
I said, baby, you’re not lost
I said, baby, you’re not lost
I said, baby, you’re not lost

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A few updates

I have several things to report today.

Yesterday morning I went to the hospital to get my blood drawn for my SLO test. If it takes as long for a response as it did for Nathan’s test, we should hear something in the first week or two of November. Please, please, please be negative! I read that as many as 1 in 30 people are carriers…

You may also notice I changed the title of my blog from “Heather Mohr’s Blog” to “In This Storm”. The address of my blog will NOT be changing, however, so no one needs to worry about that. You should be able to find my blog the same way as you always have. I have mentioned in the past that Casting Crown’s song “Praise You in this Storm” has sort of been my life’s theme song since that scary mid-pregnancy ultrasound in May. So, I decided to change the title of my blog to reflect that. I posted the lyrics right after our memorial service, and that post is here.

I also wanted to let everyone know I will be going back to work on 10/29, but I am making the transition very slowly. I will be working 2 days a week through the end of this year, and then in January I’ll start working full hours. It will be nice to feel like I’m making a contribution to our family income again, but I also am very nervous about my first day back. I haven’t been in the office since June.

Something else I wanted to share is that Nathan and I decided we really need a vacation after everything. In addition, we need to celebrate my upcoming graduation! So we are going to go to Hawaii! We are going over Thanksgiving break, November 26 – December 1. In some ways it will be nice to skip the holidays, or at least one of them. We are trying to decide today if we should go to Kauai or Maui, and we will be booking our flights tonight. If anyone has been or has any suggestions for us, please let me know!

Finally, on a matter completely unrelated to anything else on this blog, Nathan and I came up with the idea to start a blog in which we review various products. The other night in the store we were debating whether it was worthwhile to pay the extra money for energy-efficient light bulbs. We decided to do an experiment – in our living room we replaced all of our bulbs with new, regular bulbs, and we put all energy-efficient bulbs in our kitchen. We marked each regular light bulb with the number “1″, and as each one burns out, we’ll replace it with a new bulb that we mark with a “2″. According to the claims on the packages, the energy-efficient bulbs should last 7 times longer than the regular bulbs, so we are going to see if it is true. We decided it would be fun to blog about it, as well as other things we try. The new blog is called The Common Consumer. Feel free to check it out. There are only a couple posts right now, but we will update as we try new things. I think this will be a fun thing for the 2 of us to do together.

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Nathan’s SLO Test Results

To refresh everyone’s memory, a little over 2 weeks ago Nathan subjected himself to a genetic test for Smith Lemli Opitz (“SLO”). This was the last idea the genetic counselor had, as every other test so far has come back negative. In order for SLO to be a problem, 2 partners must be carriers of it through a recessive gene. For those of you who need a quick biology refresher, when a person carriers a recessive gene, that gene does not manifest any traits in that person. However, recessive genes get passed down and can show up in one’s children.

So now for the results: Nathan IS a carrier.

I was a little shocked at first, and didn’t know what to say. I was honestly expecting this to come back negative. I guess I grew a little accustomed to hearing every test was negative, so naturally expected this one to be too.

The next step is for me to get tested, which I will hopefully be doing sometime this week. It will take several more weeks for my results to come in. If I am also a carrier, we have our answer. If I am not, then we have no answers and no more possibilities. However, our chances for it being SLO just went up.

If we are both carriers, it means there is a 25% chance this will happen again in every pregnancy. We both agree 25% is too high of a risk to take. Our next step would probably be to explore embryo adoption. If that didn’t work for us, or after doing more research we decided it wasn’t right, we would move to regular adoption.

We’re not going to do any of this right away, of course. No matter what the test results are, we won’t be taking steps for the next baby for a while. There are things we need to take care of first, and we also are probably not ready to accept another baby as a unique child completely separate from Madelyn. I don’t want the next baby to feel as though he/she can never measure up to Madelyn, or that if given the opportunity I’d trade him/her in for Madelyn. A good friend of mine recently shared a story she read about a boy who grew up thinking his parents never loved him as much as his brother who died as a baby. I don’t want Madelyn’s siblings to feel that way.

I’m still in a bit of shock right now, so if I seem unemotional, that is why. Also, I know this doesn’t really mean anything until my test results come back. If I am also a carrier, then I will have to learn to accept that biological children aren’t in our future. I know it will all be fine in the end, and we’ll love our children no matter how they come to us. But it won’t be easy to make the transition from wanting another biological child to accepting, and ultimately embracing, adoption as our only alternative.

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What I’m missing

Today I am missing both what I had and what I’ll never have.

Most simply put, I miss Madelyn. I think of her all the time. Yet there are certain parts of her that are constantly flashing through my mind – these are pieces that made up my whole experience with her.

The moment I replay the most is when she opened her blue eyes and looked at me. They fluttered briefly before closing again. Looking into her eyes was a beautiful thing. I only wish they hadn’t closed, never to reopen again. My face was the last thing she ever saw on this earth. This comforts me and grieves me at the same time.

I also miss hearing her heartbeat on the monitors. It was the most beautiful sound in the world. My favorite part was how her heart rate would increase anytime I started talking. I remember one night I was talking to a doctor, and she even pointed out that Madelyn’s heart rate increased when I talked. I had always thought it was a coincidence before, but this doctor told me that babies recognize our voice while in the womb. I love that she knew my voice.

I miss the kicks, twitches, rolls, and hiccups I felt all day long. I loved looking down and seeing my stomach jerking around through my clothes. I loved it even more when my husband put his hand on my belly and we felt her moving together. My heart melted every time.

I miss seeing her on my weekly ultrasounds, moving around, kicking the ultrasound technicians, and seeing her blink on the screen. Wednesdays were my ultrasound day, and it was by far my favorite day of the week.

After she was born, her skin was warm with life. I hate that the coldness of her skin after she had died is the stronger memory for me. I would give anything to be able to touch her and hold her again. I miss the weight of her in my arms, her head of blonde hair, her little fingers and toes, and that overall feeling of awe as I stared down at her little face. I remain in awe, but can only stare at her face in pictures.

In addition to these things, I also miss the things I will never have. Sometimes the simplest things create the most longing. I’ll see a mother in the grocery store with a sleeping baby, and think how that should be me. I’ll never get to load Madelyn up in her car seat and take her places. I’ll never push her around in her stroller on a leisurely stroll around the block. I’ll never get to dress her up for her pictures and the holidays. The only purchases I’ll ever get to make for her are memorials in her honor.

We’ll never see her smile, roll over, or crawl on the floor. We’ll never get to clap for her as she takes her first wobbly steps toward us, because those steps will never happen. We’ll never take her to Disney World as we had talked of doing since the early days of my pregnancy. We’ll never get the experience of watching her go off to school for the first time.

We’ll never nervously wait up for her as she goes off on her first date or take her shopping for a prom dress. We’ll never take her to visit college campuses, watch her walk across the stage as she accepts her high school diploma, or send her off to college as we sit home and wonder where the time went. Nathan will never get to walk her down the aisle as she marries the love of her life.

We miss Madelyn, and we miss every experience we won’t have with her. We will get to experience some of these things with any future child we have, but that doesn’t change the fact that we won’t get them with Madelyn. Holidays and family vacations will always feel a little off without her. Our family portrait will never be complete. While I know grief eases with time, we are destined to travel through life with every single thing we do always there to remind us that Madelyn should be a part of that too.

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Broken Hallelujah

My mom sent me a link to a song called “Broken Hallelujah” by Mandisa, and I wanted to share the lyrics here. Some days it is harder than others, but in my sadness and lack of understanding, I still choose to trust God. I know He is my comforter, and has been there throughout this whole situation. Even when I am angry at Him and shut Him out completely, He is there, waiting for me to allow Him help me carry my pain.

Broken Hallelujah

With my love and my sadness
I come before You Lord
My heart’s in a thousand pieces
Maybe even more

Yet I trust in this moment
You’re with me somehow
And You’ve always been faithful
So Lord even now

When all that I can sing
Is a broken hallelujah
When my only offering
Is shattered praise
Still a song of adoration
Will rise up from these ruins
I will worship You and give You thanks
Even when my only praise
Is a broken hallelujah

Oh Father, You have given
Much more than I deserve
And I have felt Your hand of blessing
On me at every turn

How could I doubt Your goodness
Your wisdom, Your grace
So Lord hear my heart
In this painful place

Chorus

Hallelujah
I lift my voice
Your Spirit moves
I raise my hands
I reach for You

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