Real but not raw

I wrote this several weeks ago.  Often it takes me time...a long time...before I actually publish my thoughts.  For better or worse, some of my posts do actually make it.

When I began writing, I'm not entirely certain I knew what my purpose for this blog was.  I think mostly it was just healing to get things out.  I've written many more posts than I've actually shared with the internet world.  Most of them a little dark or embittered, not tempered by next-day editing.  At the same time, I do remember thinking - the world doesn't really know what it's like.  I certainly don't know what it's like to live in the shadow of my child's death.  In the face of the rest of my life.  Not until I live it, day by day.  So why not be real?

But there is real, and there is raw.  And lately, when the evenings come to an end and I'm faced with the thoughts I didn't have time to think during the hustle and bustle of the day, I've been pretty raw.  I think there may be a few too many straws on this camel's back and it's been feeling a bit bent.

But today, in a quiet moment when it was just me and the little human doing a jig in my belly, I felt real, but not raw.  I flipped through the day in my mind - the sweet moments, the fearful moments, the sad moments.  Makayla is, as always, testing out new feelings or understandings of her life and the very present absence of her sister.  Today she switched her tone mid-sentence over an afternoon snack...

I miss Annabelle very much, Mommy.
What do you miss about her most?
Her heart.  And her love.
Well, those are things we can still carry with us, because we can always love her even though she's not with us.
Can I love brother, even though he's not with us yet?

I am so thankful that today was not a raw day, because sometimes I can't make it through these amazing conversations.  A few tears, she can understand, but when the streams come down, her focus shifts to concern for me and the conversation changes.  But today we both smiled and shared a sweet hug.  What a moment to remember.

Then there is fear...it has a devious way of sneaking in, permeating the depths of what I thought was steadfast faith.  It shouts at me from TV advertisements in waiting rooms and whispers at me from silent moments of uncertainty.  Even in the midst of beautiful conversations about a future with brother, I wonder...can I promise Makayla that?  Can I promise myself?

If it's a process, or a cycle, or a random barrage of feelings, I couldn't really tell you.  Is it a new stage of grief?  A reality of life in the shadow of death?  Whatever it is, it tests my faith for sure.  And that's it's own battle.  One fought out with God in the darkest moments.

Perhaps the hardest thing to contend with is that, no matter the joys that are before me, the sorrows are as present today as they were a year and a half ago.

I don't suppose I'd be accused of having it all together.  But here I am.  Sometimes throwing brave punches right back at the fear.  Sometimes poking weak jabs at it.  Sometimes running in search of a distraction from sadness.  But I'm here.  And I see the very real face of God in the middle of those comforting moments when I'm real, but not raw.

Memory

Memory is a strange thing.  Some details seem etched in the folds of my brain, while others - ones that I would like to have with me - are blurry.

I cannot imagine the pain of mothers who do not have pictures of their lost children.  There are so many times when I sit, staring at Annabelle's photos, wondering if I truly remember what it was like to look down into her eyes.  She had such beautiful, knowing eyes.

Memories I wish would fade, remain clear.  The look on the neurologist's face.  The mortuary van driving away.

Sometimes I sit and try to think of Annabelle.  Other times, memories jump into my head without warning.  But I am grateful for them.  Even when they bring with them streams of tears and ache that escapes description.

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Last week we got a special delivery from Annabelle's nurse.  Nearly a year ago, she had mentioned something about a memory bear, and it wasn't until much later that I was collected enough to decide what materials to send to the seamstress.  Just before the holidays, I finally selected a purple blanket - a gift from a dear friend, something Annabelle never had a chance to use - and an outfit - handmade by another dear friend.  The seamstress - a volunteer with Trinity Kids Care Hospice - had created for us a gift.  Something to aid our memories.

We had a nice visit with the nurse.  We talked of Annabelle, and grief, and the future.  And she gave us the memory bear.

I sat there watching Makayla hold the bear, feeling my baby kick at my insides.  I didn't weep, but I was overcome with sadness that one will have vacant memories of a sister she hardly knew, and the other will have only stories of a sister he never met.  But the bear, along with pictures and stories, will help remind them of the sister who couldn't stay long, but is still a part of their family.

A new picture of family

Makayla knows far more about loss and death than I would like her to.  In fact, I would guess that I would have tried my very best to shelter her for as long as possible from such sad subjects, had they not burst into our lives so suddenly.

When Annabelle passed, I had no idea what to say to Makayla or how to address her questions.  I still don't most of the time.  But there has been huge transformation in the way I speak to Makayla, and in my own understanding.  Death is a sad thing, yes.  However, at least for the person who died, it's not a bad thing.  Annabelle is not in pain, or confused, or lonely.  We are because she is not with us, and that is something we live with.  But Makayla has an amazing picture of what her family looks like now.

Yesterday, as we were coloring together, she asked me to draw her family (please refrain from artistic judgement).  

Draw Makayla.

Holding the baby.

With Daddy next to me.

And Mommy too.

And draw Jesus in the sky holding Annabelle.

This is Makayla's family.  And it is normal to her.  Yes, my heart breaks because I know what she has missed by not having her sister with her.  But it also swells with pride because Makayla knows her sister.  She loves her sister.  

I'm going to be honest.  As thrilled as I am to be expecting another child, I am fearful that the excitement will somehow diminish Annabelle's memory.  Logically, I know it is untrue, but the fear is there.  This picture may not be the one I dreamed of when we started our family, but it reminds me that Annabelle is coming with us on this new journey, even if only in memory.

Makayla often prays for her new baby.  Many times I've heard "Dear Heavenly (sounds like Heavy) Father, please let Annabelle stay in Heaven and help the baby stay here and come out soon."  How often my tears are mixed with laughter thanks to the genuine heart of my beautiful little girl.  A few weeks ago, Makayla was babbling on about how much she loves the new baby when she stopped suddenly and declared, "I'm not sad anymore, Mommy.  Are you sad anymore?"  Thankfully I was driving, so she couldn't see the wreck that was my face.  My heart was simultaneously leaping with joy and tearing over the sadness my sweet girl has endured, and in fear of all the what-ifs.  

Oh my dear girl, I wish I could protect you from all the pain in the world.  

And so I guess we just keep moving forward with this strangely beautiful picture of a family that I never would have drawn, were Heaven not as real to Makayla as Placentia.  

Our Adoption

Wow, I'm in awe of the fact that I'm actually sitting down to write this out...the (shortened) story of our adoption.  It may not be entirely complete, but I just can't stand not to share...it's such an amazing picture of God's unwavering love.

First of all, I must admit that I really want to spend the whole post talking about shots.  Yes shots. Exactly 100.  But I won't, because I want you to think that I'm a hero, and the reality is that I am not.  Ryan might be a hero for administering said shots and then enduring the rage of hormonal insanity that ensued.  Makayla might be a hero for enduring along with him.  But I'm not the hero here.

The reality is, in the bigger picture of all we've been through, the meds were the tiniest inconvenience.  But perhaps I'm getting ahead of myself...if you know nothing of our adoption, you might be very confused as to why I'm talking about meds in the first place, so let me begin again.

Our adoption is complete, and it is in progress.

In January, we made a phone call to Nightlight Christian Adoptions indicating our interest in their Snowflakes program for embryo adoption.  In March, we received the Home Study packet, and we were meeting with the social worker for our home visit and final reports in May.  In June we matched with a family.  All these steps are akin to the traditional adoption process.  However, our family didn't have an infant or a child to place in our care, they had 3 frozen lives, waiting to be given a chance.

As opposed to donated gametes (eggs and sperm), embryos are fertilized eggs, already conceived (in this case, in a lab), and multiplying, dividing, growing.  Ours were 6-day old blastocysts, the most "mature" stage at which embryos are typically frozen.

In July, we took custody of these embryos after they were over-nighted to our fertility clinic...can you begin to imagine the insanity of it all?  Tiniest lives in a dry-shipper, traveling cross-country to their potential family...I'm sure Ray Bradbury could have written an entire book about it.  But despite all the sci-fi strangeness of it, this is how we took custody of our future children, and in August, I began preparing medically for the transfer process.

At this point, it became a "regular" Frozen Embryo Transfer (FET) that is typical of IVF cycles.  Medically, it didn't matter that these children will bear no genetic resemblance to their parents (US!), and on September 19th, we went in for the transfer.  Modern freezing techniques are very effective, but that does not mean that all embryos will thrive.  None of our embryos were genetically screened, so the doctor gave us low odds of success.  The first embryo, having been frozen using an old technique, did not survive.  That left 2 and we determined to thaw and transfer them together.  Two weeks later, I was confirmed pregnant, and a week after that we had an ultrasound determining that 1 embryo had implanted and was growing.

In June we will welcome our third child into the family.  Praise God from whom all blessings flow!  Yes, even this crazy, scientifically complex process, was part of His blessing to our family.  He has put us (a family to whom adoption was entirely foreign less than a  year ago) on this path, and He has opened every door along the way.

There have been many emotions along the way.  Some families feel deep loss for the embryos that do not survive, others are more "objective" about their chances.  I would guess I fall somewhere in the middle.  Yes, I am deeply disappointed that all 3 little lives, who each had the same potential, did not survive.  But I also understand that no matter how an embryo is conceived, there are many - around 50% actually - that do not develop into a sustainable pregnancy.  I felt particular sadness for the embryo that was transferred but did not implant.  But I am also overwhelmed with the joy of one little life growing inside of me.  It really is a miracle.

Now, I'm just pregnant.  Hah.  To say that...just pregnant.  I had to go through the same vomitous weeks that I endured with Makayla and Annabelle.  I have to wait the same 40+ weeks.  And the baby, in all respects legally and socially, will be mine when it is born.

Our "adoption" is really not a legal process for embryos.  Legally, all that had to occur was a transfer of property.  We chose to go through the entire adoption process through an agency for many reasons, but that doesn't mean the government views our embryos as life.  At my 9 week ultrasound, I could clearly see arms, legs, ears, spinal chord, independent movement; I could hear it's beautiful heartbeat.  But these clear signs of life don't prove to the world that this baby - this miracle that was frozen for 6 years - is alive.  But I digress from the purpose of this post...

Our adoption is still in progress, because our baby is not in our arms yet.  But this child, no matter it's genetic origins, is wholly ours.

We do get some "FAQs" about our adoption so let me see if I can't anticipate your curiosities:

• The baby is Caucasian.  (yep, you wanted to know)
• We do have a relationship with the genetic family.  Right now that means e-mails and will mean photos once baby is born.  In the future, we are open to meeting so that the genetic siblings can have a relationship with one another.  
• We will be open about the child's origins from the very beginning.  Obviously, it will be a process of understanding, but adoption will be a normal term in our family.  
• I have the same risks during this pregnancy as in any pregnancy.  At this point, it is no different than a "normal" pregnancy.
• There is no adoption finalization required for embryo adoption.  We are required to have a follow-up Home Visit and submit 3 post-birth updates, but in legal terms, our adoption is final.
• Want to know more about embryo adoption? http://www.embryoadoption.org/
• Want to know more about Nightlight Christian Adoptions?  https://www.nightlight.org/   They do all types of adoptions.

It has been a whirlwind the last few months and I know this pregnancy will seem particularly long because of all the time we spent anticipating and preparing...but here we are.  I am pregnant, and we will have another child.  God heard us and He answered.  He showed us a way and is ever present in the midst of our worries.

As much as I try to focus on the positives of each passing week, fear is still very present.  I was an overprotective worrier before we lost Annabelle, and now I feel the depth of my lack of control even more.  It is something that has forced me into the faithful arms of the Father.  I often try to pick myself up, but there is no earthly comfort that can ease my spirit.  That doesn't mean my fears are gone.  I trusted God, and Annabelle died anyway.  I know that there are a million things that could go wrong with this pregnancy...with life.  But the only thing I know for certain is that nothing can give me rest from these fears but my trusting God.  Let me be real.  God's purpose is not to bring me happiness.  If it were, why would I still trust in Him after He allowed Annabelle to die?  I am no saint, and it is not easy, but my life is meant to bring God glory.  That's why I share this crazy mess we're in.

If you want to know more about any of this, feel free to send me a message...there's only so much I can type, but I would love to share more about our story, our struggles, our hopes, and God's redeeming love.

Please pray for Ryan, Makayla, Baby, and I!

Ryan's Testimony

God put on Ryan's heart to share our story shortly after we understood Annabelle's prognosis.  It has taken time to see the ways God has worked through our heartache and he felt that now was as good a time as any to bring his story to our church. While the act of sharing itself is healing, Ryan's purpose in speaking to the congregation was to bring to light God's presence throughout our lives, including during our tragedy.  God is gracious, He is merciful, and He is faithful.  Our life is not at all what we had planned, but it is what He had planned all along.

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I am compelled to speak to you today in hopes that God would continue to use Annabelle’s life to minister to others.  May I honor both Him and her in this testimony of God’s faithfulness.

About two years ago, my wife and I discovered that we were expecting our second daughter.  Annabelle Faith Cannon was born August 16, 2013 and was diagnosed five days later with Spinal Muscular Atrophy, an untreatable, debilitating, and completely fatal disease.  SMA is the result of two recessive genes which prevent the regeneration of motor neurons.  The wiring that controlled Annabelle’s muscles would degrade and eventually fail, resulting in the inability to move, swallow, or breathe.  A panel of doctors explained to us before leaving the hospital that Annabelle would die within a year.   I was desolated.

Although we didn’t know it, April and I have always been carriers of this genetic defect and because it’s genetic there was nothing we could have done to prevent it.  God knew before we were even married that we would have Annabelle and that she would die of SMA.  It says in Psalms:

You saw me before I was born.  Every day of my life was recorded in your book.  Every moment was laid out before a single day had passed. 

– Psalms 139:16

Despite the tragedy, God shows me that He is with me through His purpose, His plan, and His provisions through each stage of Annabelle’s story.  I longed for His presence because anything else brought despair.

When Annabelle was first born, before we knew anything was wrong, I was filled with pride in my abilities as a parent and my expectation of another daughter.  I was purely happy.  Without even being conscious of it, I felt entitled to this happiness and fulfilment in my life.  Her diagnosis shattered the paradigm I so neatly set up.  Visions of empty photographs and Makayla playing alone haunted me.  The unspoken right of reproduction was torn away.  The genetic component SMA meant that any children April and I conceived would have a 25% chance of experiencing the same fate.  Odds we could not risk.  While I hoped to find confidence in knowing the facts, instead I only found emptiness.

However, Annabelle was still an infant that needed my love and care for the precious amount of time she would have.  My first day back standing in this building, I felt the hand of God upon me saying “I will be with you through this.”  God gave us a joyful life with her which lasted just two and a half months. □  Despite our fears and tribulations, Annabelle didn’t need breathing or feeding tubes.  She never needed to return to the hospital.  April managed to feed her every day until her last.  Annabelle died peacefully surrounded by her loving family, which is as much as anyone could hope for.

Holding Annabelle’s body that day was my first direct experience with death.  It was debilitating to completely love her (while feeling utterly useless) as she slipped away until nothing of her remained except a non-functioning shell.  As the warmth left her, I knew that there was nothing more I could do.  During the following days, I thought of Mark 5 (the story of the girl Jesus brought back from the dead) and how Jesus didn’t come to my house that day.  I also thought of Second Samuel 12, where King David pleaded and fasted before God on behalf of his son.  When his son died anyway, David got up, worshiped and ate food.  Life continues, dull and pessimistic.

Makayla is the girl who lived.  She had the same chances of presenting SMA as Annabelle did.  We were completely ignorant of God’s protection of her.  My delight in Makayla was coupled with anguish for Annabelle.  As a two-year-old, however, Makayla was very perceptive of her changing family and required an explanation.  Answering her small innocent questions forced me to honestly express in simple terms what happened to her sister. 

·        “Where is Annabelle?” She would ask.

o   She died and went to heaven with Jesus.  (the best church answer I could come up with)

·        “Why did Jesus take her to heaven?” (She is very perceptive and persistent.)

o   Her body was broken and did not work, so Jesus had to save her.

·        “Why was her body broken?” (I thought of my own brokenness)

o   I don’t know why, but she could not live here anymore.

·        “Why don’t you ask Jesus for Annabelle back?” (An obvious but painful question)

o   We did, and He said no.

These little conversations continued for several months and always managed to surface at unexpected times.  How could I be the spiritual leader of the house when I struggled to believe it myself: how can a person with such a short life transcend death to be in God’s Kingdom?  Is heaven really beyond this world?  Could I face death with the same peace as my infant daughter?□  I was disillusioned and skeptical.  Before these doubts could find a foothold in my faith, God used a dear friend to give me confirmation.  After a Sunday service, this man approached me with turmoil in his soul, took me aside, and began telling me about a vision of Annabelle standing with Jesus in heaven, describing the same simple picture I told to Makayla so many nights before.  I knew then, maybe for the first time, that Annabelle was ok,  and I felt peace.

Up to this point, my walk with God had been mostly passive.  These were things happening to me, forcing me to respond in the way that I ought, reaching out as a matter of survival.  Now we were back to a family of three, the next steps would require action.  With heavy hearts and empty arms, God put in us a desire for more children which didn’t make sense.  Annabelle was conceived out of ignorance, but if we risked conceiving another child with SMA then we would be guilty of that child’s fate.

God provided a way that neither of us expected: we would adopt an embryo. Imagine take-n-bake: all the ingredients are included, put it in the oven for 9 months and out comes a baby.   Whereas the knowledge of our genetics paralyzed us, this option allows April to carry a child from a donor family.  God’s provision is beautiful and poetic, but such things are never easy.   It took months of working through the adoption process, coordinating with a local fertility clinic, and a regime of daily shots of medication, but I am happy to report April is 12 weeks (now 13) pregnant with our third child. 

My joy stands at the edge of fear and inadequacy.  I must be guarded not to seek after my plans or my expectations of life, but after Jesus.  C.S. Lewis provides wisdom: 

“The great thing, if one can, is to stop regarding all the unpleasant things as interruptions of one's 'own,' or 'real' life.  The truth is of course that what one calls the interruptions are precisely one's real life -- the life God is sending day by day.”  – C.S. Lewis.

Our situation is not a detour, this is our life.  Luke 17 says:

“Whoever seeks to keep his life will lose it, and whoever loses his life will preserve it.” 

–  Luke 17:33

Seeking after my own life is to miss what God is doing, but it can be agonizing.  Every milestone has been a new call to trust God and every time He provides a new reason to trust him.  A few weeks ago, Will Anderson spoke on Psalms 139:18 where David said, “when I wake up, you are still with me.”  Jesus did come to my house that day; He reached out from heaven, took Annabelle by the hand and said to her “Little girl, get up!”

Here They are Again

Last year I wrote a post about the holidays.  It came across bitter, even angry, and I ended up deleting it.  I'm all about honesty and I'm making an effort to open up about real grief, but to bare the ugliness of my heart-break to the public didn't feel right either.  After all, the real benefit was in writing it down for myself, not in posting it for others to read.

But here come the holidays again, and darn it if I'm not angry again.

I think, even before our tragedy, that I always knew the holidays were particularly hard for those who had lost loved ones.  It's not like I had been immune to loss before.  Maybe because of the intensity of my sadness, I just assumed that there couldn't possibly be an event that would make my sadness stronger.  But I was wrong.

Those fantasies that I described in my previous post - they happen more frequently around the holidays.  I think again about the matching dresses I had to return last year.  The pictures we never got to take.  The gifts we never even got to buy.

Makayla never got to share a holiday with her sister.

This year, between the excitement of Thanksgiving and Christmas, we get to celebrate my sister's marriage.  What a joyous day it will be.  But you know, there's a part of me (a bigger part than I'd like to admit) that just wants there to be another flower girl waddling down that isle.

Grief is a process - so they say.  It's not a list of stages you get to check off.  Oh, they all exist - the denial, the anger, the depression - but you don't suddenly reach the "acceptance" stage and earn a grief diploma.  Trust me, I've accepted that Annabelle died.  And sometimes I'm still angry about it.  And some mornings I wake up and see her picture and I wonder - did it really happen?  And sometimes there are so many tears.

Even "process" implies some type of ending.  Losing my daughter - that will hurt until the day I die.  Yes, time will take the sting away.  But I've seen the tears of a mother 20 years later.  What heartache to lose a part of yourself.  Physically, you heal.  You develop new routines, new expectations.  You learn to thrive.  But sometimes the pain comes back.  Real, intense, overwhelming.  And sometimes you just really long to have it back - the whole life - because it was (at least in your memory) a little bit nicer.

Yeah, I'll admit it.  I wish my life were just a little nicer.  Fewer tears.  More smiles.  Tomorrow I'll think - gosh, I really could have used this moment to talk about real joy - the kind that comes from knowing that God is with me and loves me even when I'm angry and tearful and messy.  What I will say is that I'm so grateful God will let me be angry and tearful and messy for as long as it takes.

In the mean time, the days march forward whether I want them to or not and Thanksgiving - my very most favorite - is right around the corner.  The whole family will be gathered together and there will be feasting and merriment.  And we'll all miss the ones who are in Heaven.  But we'll celebrate anyway because there is so much to be thankful for.

Knowing

Sometimes I catch myself thinking...
Right now we should have a 3 year old and a 15 month old.  And things would be wonderful.  And we'd be expecting or talking about trying for a 3rd.  And things would be perfect.

But the reality is, Annabelle had SMA.  She always had it, from the moment of her conception, and she would have it if she were alive today.  And although I'd give a lot to have her in my arms again, our reality would be far from the fantasies I allow to play out in my head - even for just a moment.

Our reality would be specialists, feeding tubes, heartache.

I see families out with their children with severe disabilities and I wonder how they do it day after day.  I know how desperately they love their children and how hard they are trying to make the most of each day - living a normal life as best they can.  And I also know how exhausting that is.  For only 2 months we carried on - trying to give Annabelle and our whole family sweet memories of a normal life together.  It takes everything.

I often want to run up to the mom or dad or sibling and tell them how incredibly brave they are.  But I never do.  Because what would I say?  I know nothing of the years they've endured.  Besides, trying to empathize usually comes across as contrite.  I hate to say it, but I know that first hand.  Maybe one day I'll have the courage to do it, but for now, at least I try to hide my tears.

There are many ugly childhood diseases out there.  Most we've probably never even heard of.  But you've heard of SMA now.  I'm not sure what awareness will do, but here we are - knowing.