She Brings Joy

I could call them "rest" as in, the resting of my brain from constant second guessing. 

Rest from my double-crossing heart, which so flippantly disregarded my frustration when I lost her... And just kept beating. 

Rest from thinking of her tiny palms, covered over by her curling fingers with their impossibly small nails.

Rest from the parts of me which still feel the weight of her in my body. In my arms.

I don't notice when the rest begins -- I just notice that my cheeks hurt from too much smiling and the house is organized and everyone slouches because they are relaxed around me.

I notice my resting state in the dust that settles over her things. 

The photo album that isn't opened. 

I notice my rest when all I'm thinking of isn't how I was cheated of my firstborn daughter. 

My resting state is at odds with the frantic energy that courses through me when I am missing her. Because missing her has become a state of being, not just a feeling. 

I can't be missing and resting at the same time. 

Missing has become a verb that gathers steam over the course of weeks and then drops like a hydrogen bomb over my heart.

Rest is that in between where I breathe more easily and life becomes bearable and life without her becomes bearable and I am not

Counting

Each 

Day

Until I see her again.

Rest is always welcome -- as is missing -- it offers some respite to the self-doubt. 

Rest.

Rest comes and I see the promise in all of its meaning and I'm overwhelmed with gratitude and sometimes I want to stay in that resting state. 

Sometimes.


It seems as if it could be a lovely space if I could just stay there for an extended period of time.... But if I stay resting I am never missing, and the passion of my emotion towards that tiny girl is just one part of the big puzzle that makes me who I am.


I value the rest in me. That part which can sit and watch my other children play without seeing a phantom girl running along with them. 

I value the fact that my restful state is the one which I most often find myself living in.


But giving up the whirlwind of missing would be like giving up the sun. The memory of her makes me shine brighter. 


In that state colors become brighter, scents become more pungent, and every touch crackles with electricity. 

This missing -- it's a gift. 

This resting -- it's a gift. 

Out of its proper proportion, either one would sink me.

The weight of her body in my hands as she slowly slipped into the great beyond. 

The softness of her skin against mine.

The other night I was driving my car, and one of her songs came on. I cried, for the first time in a long time. A big, ugly cry.

I cried for her little life. I cried for my mother. I cried for myself, suspended like a bridge between these two women. 

I sometimes have this feeling in the palms of my hands- they are electric. Those are the times that I miss her the most. When she is missing from me. That electricity is the weight of where she rested. A memory imprint on my flesh. My hands, permanenetly scarred in her absence.

I miss her, and I miss her. I'm full of missing and empty and wanting and electricity.

My lifespan isn't enough to keep hold of all of this energy. I hope to have them both, when I close my eyes. 

Tonight is just about remembering. 

Right now, there are two organizations raising funds to support families this way.

All That Love Can Do supports families who choose to continue a pregnancy after a poor diagnosis. 

Right now they are offering trying to raise money via a t-shirt booster.

Do you know someone who chose love when faced with a poor prognosis? This would be a beautiful gift to give them to acknowledge the sacrifice they made in love.

Hannah's Heart and Love is an organization that supports families who suffer miscarriage, neonatal, and child loss. 

For the entire month of April they are holding a fund-raiser with an independent Origami Owl distributor. (Click the "events" tab for more information.)

With Mother's Day coming up, you could treat your mom (or yourself) to a sweet little locket while helping a great cause.

As always when writing on a religious subject which may hurt some baby loss mom's feelings, I am disclaiming this post -- it may not appeal to everyone. It is only going to appeal to Christian moms. Please remember, we are all just sojourners here and the individual experience of one of us may be vastly different than another's. This is part of my journey, a story of me as a Christian being inadvertently shut out from the huge baby loss support system, and it is something which I believe I may not be alone in struggling with.

During my pregnancy with Beatrix there were very few online resources for the loss mom, presented in an organized fashion. The Facebook group explosion, which happened shortly after her birth, helped to connect parents in a new way.

In the four years since I lost my Beatrix I have seen a remarkable shift in the baby loss community.

We have become a force to be reckoned with. Women are using the powers of this collective to change the conversation about baby loss. We are connecting over this shared experience. Legislation is being created based on our experience, as is a shift in best-practices for caring for the post loss mother, particularly the mother whose loss occurs in her first few days post-partum.

We are seeing a movement towards acknowledgement of the pain of child loss in even its earliest stages. As a pro-life advocate I find this especially gratifying. Life at all stages should be honored and babies lost at any gestation and for whatever reason, are worth grieving over.

Very early on in the movement there were a number of brave mothers who put their hearts on the line, creating safe places for mothers to remember their babies. They carved out beautiful, comforting spaces for us to mourn together. They set the gold standard for how to interact with one another. They pushed other moms into activism. They helped me immensely with my growth into this terrible reality.

But --


Tonight I read a query from a mom in one of the loss groups that I belong to. She asked if anyone "felt" their baby near. She expressed distress due to the fact that she had not, since she understood so many other moms do sense their baby's presence.

She was saddened by the distance she felt between her and her sweet son.

I wanted to respond because I too had wondered about that in the beginning. My husband once had a dream of my sweet Bea. It was very upsetting to me because of how casually he mentioned it. I hungered so deeply to just be in the space where my daughter was. It seemed unfair -- he was given the gift I'd prayed for since she had died.

I heard loss friends talk about how their children sent them messages from heaven. I hadn't received messages. I wanted to. I willed myself into believing that it could/would eventually happen.

I looked for signs in the clouds.
They never came.

Eventually I began to grow into this skin. The shock of loss began to wear off. I began to meditate deeply on the nature of death, the nature of my daughter's death and the inevitable fact that death always separates us from those we love, no matter how much we love them.

As I ruminated upon these things I came to the realization that just like our society in general, there is a pervasive mysticism in the baby loss community. This is partly because some of the most vocal moms, those who helped to create the parameters of this community,  themselves seem to have enthusiastically embraced mysticism.

For anyone who's a mystic -- that's great.

But for those of us, including the mom who wondered why she wasn't feeling her baby, who are Christian -- mysticism just isn't part of the story. We don't feel our babies nearby because they aren't here. We don't see signs and psychic messages from beyond the grave.

This narrative can inadvertently cause some moms pain. Moms who wonder why they don't get these signs and wonders. Moms who have a visceral knowledge that their babies are gone but who are having a difficult time working that knowledge into the fabric of their faith.  It can rob them of peace

King David said, "I shall go to him, but he will not return to me.” (2 Samuel 12:23)

To the newly bereaved mother this is such a heart breaking and terribly inadequate response to her suffering. We will go to them, but they will not come to us.

The God who chose to gift her with this cross also chooses to hold her baby beyond her reach. On those days that she has exhausted herself with need to touch that skin again, that God isn't the one she wants to hear about. She wants to hear about the God of miracles, who can surely turn back time and fix her baby. She wants to hear about Lazarus rising from the dead.

She wants to believe that God would not be so cruel as to deny her those small communications. But any belief that the dead reach beyond the grave is based on nothing more than feeling.

It's a harsh reality.

Our babies don't feel close to us because they are not here.

They will not come to us.

We will, however, go to them.

It's a long walk though. And the temptation of trying to shorten that walk is sometimes too overwhelming to resist.

I read a quote recently. It summarizes this concept succinctly.

"The longest walk home that a parent will ever take home is the one after their child has run ahead of them."

We have a difficult time with conceptualizing the span between now and then. We are a "now" people. We are able to have overnight packages shipped from halfway around the world. Family members who live across the country are available 24/7 via our computer screens. Most of us can drive ten miles from our home, in any direction, and find a hot meal ready to eat within minutes of ordering it.

We are addicted to immediate gratification. We want things done yesterday.

I want my daughter now.

But Death doesn't do demands. It doesn't answer to our "I just want" statements. It is permanent and unforgiving.... In the context of a life without God.

We have a difficult time with that knowledge, with the waiting. So we try to grab a little bit of eternity occasionally.

Unfortunately even when we grasp as tightly as we can, eternity isn't really what we are holding onto.

(Even more unfortunately, there are people who will take advantage of that. They tell you that they can connect you with the people you love. They can't. They just know that there is nothing more desperate than a grieving mom. They know that if they can pull you in, you'll be hooked on that feeling of togetherness. In one sense, mysticism will always end up becoming an addiction. You will always be left wanting more because it can't deliver on the promise it makes. Permanent connection with the one you love. )

In my own grieving process I very quickly came to understand that the lack communication from my Beatrix, who is living her supernatural afterlife, is not about me.

It is about the Easter promise- "It is finished". It is about the promise that when our physical bodies fail, we will leave this world. It's about reality versus a feeling that we may have.

I cannot feel my daughter because God's truth is a real thing.

She didn't fade away into an amorphous cloud of energy.  

She is in paradise.

She is waiting for the resurrection.

She is singing with all of the saints who went before her, about the glory of a God who redeemed all of us. The broken, weak, and wanting.

And I am glad for that. My feelings are fickle things. An eternal outlook based on my feelings would be a terrible thing -- I am not nearly as trustworthy as God is.

Do I want her here? Of course. Is that desire normal? Of course. Does it make me less faithful? No.

But the reality of the situation is that I would not trade the knowledge of her security, and the fulfillment of that promise for even the smallest cosmic communication from her. Because I can't have it both ways. I can't claim to believe in the resurrection of the life to come and then make attempts to pull her out of a spiritual energy cloud. It doesn't work that way.

The promise of our reunion is enough to keep me satisfied that the silence from my daughter is part of the plan. (Most of the time...)

It's enough for me to accept that the plan is something bigger than me and my grief.

I hope that more Christian loss moms will come forward to share their stories of healing without utilizing mysticism so that no mom ever feels that something has gone wrong, because she cannot feel her baby close. We have enough room in this community to say, "I don't agree with you but I validate your grief and I will support your grief process, as long as you support mine."

I hope that if you are reading this, you are moved to understand that your baby is in a place where there is no more pain, sorrow, or suffering. That you will see her or him again, and when the time comes you will understand and be so grateful for the truth of the Gospel and the reality of what the resurrection means.

If you are a Christian baby loss blogger and you have written about grief, mysticism, and/or Christianity, I would love to hear from you. I am interested in creating a collective of supportive women who can help navigate this post-loss terrain for the Christian mom, by basing that support on consistent, orthodox, Christian teachings.

Please contact me at:

Sarah@shebringsjoy.com

I don't want to leave it. It's my grief tossed out to the stars, scattered and messy. I know that someone is reading it- and I don't know if it's a mom who is looking for answers to her baby's diagnosis, so I can't remove it. I do have the occasional desire to write about my feelings... And I started this as the small place where I kept her alive.

A number of times I have stopped and started projects here. Most of them projects that other loss moms were doing, and some that fit this new "Christian mom blogger" niche that's popped up over the last few years- I thought that was what I as supposed to do. Everyone else is doing it, after all.

None of the projects seemed to fit. 

But the last few months things have taken off in an entirely different direction-

Over these last few months I have devoted a significant amount of time to the website that my family began in honor of our sweet Beatrix. It's a place where parents who are looking for answers can come and find them. We had started the website a year after she was born, but it sat relatively unattended to for a while. (If you'd like to help us, we could really use it- we are working on becoming a 501(c)3 organization, but it's a lot of work- and the fees for domain registration and hosting aren't inexpensive. You won't get a tax receipt-yet- but you will be helping create a space for helping people who have received this diagnosis and who have decided to continue their pregnancies.)

I have also been talking to moms who have suffered losses due to LBWC. I am always hungry for stories about their babies- as much for my benefit as theirs.

In addition we have been able to connect with some professional medical organizations about collaborating on genetic projects related to LBWC, and projects related to advocacy for rare diseases. 

Lastly, we have started talking with a national pro-life organization about how we can help change our culture. No baby's life should be cut short because they are different- and parents need to know that carrying to term is an option.

There is so much more to be done in my Beatrix's name, than grieve. I think after four years it's time to begin making certain that her life wasn't lived in vain.

There is a little boy who is surviving with Limb Body Wall Complex, against the odds.

https://www.facebook.com/Hopeforhayden1