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.

Understanding our Options

Our situation is a compound one.  We lost our beautiful daughter to an ugly disease.  Nightmare.  That ugly disease is genetic.  Nightmare.  What many don't consider is the impact this has on our future.

In reality, what I'm going to share is private.  I am comfortable talking about it, but posting it on a blog makes it so very public.  I don't know who will read this or how it will be taken.  I wouldn't normally share the details of our family planning...but for some reason, it's part of our story, and in order to begin the next chapter, I have to finish the one we're in.

When we learned of Annabelle's diagnosis, we were quick to be tested for the SMA mutation ourselves.  The doctors told us Makayla should be fine (I choose never to relive the week we had to wait for those results), and, praise the Lord, she is healthy.  She is likely a carrier, but she will have to decide if she wishes to be tested in the future.  The chance that Ryan and I were both carriers was great, but we had to be certain because it would affect the future of our family. The results confirmed what logic told us - we both carry the recessive trait for SMA.  We will not be physically affected by the disease, but Ryan and I can pass it to our children.

Once the results were in, there was only one viable option in our minds.  However, to explain our decision, here are the options we had.

1. Continue having children naturally.  Any child we conceive has a 25% chance of expressing SMA.  The 75% chance that future children could be healthy is enormously tempting; but when you have lived through the consequences, 25% is a huge risk; and it is a risk we are unwilling to take.  We were ignorant of SMA before Annabelle was born and can't blame ourselves for her condition or her death.  Now we have knowledge.  To choose the risk would have dire consequences on us, our unborn children, Makayla, and on the rest of our family.  Ryan and I stand firm in this decision, but it is one of the hardest decisions I can imagine making.

2. Not have any more children.  We do not believe that our family is done growing and therefore we are not choosing this option for now.

3. In Vitro Fertilization (IVF) with Preimplantation Genetic Diagnosis (PGD).  Let me explain as simply as I can...IVF is a process of extracting eggs and sperm, fertilizing them in a lab, thereby creating embryos that are then transferred back into the mother's womb. PGD is a test done to determine the embryos' genetic makeup.  It does not harm the embryos and would give definitive results regarding genetic abnormalities such as SMA.  This sounds ideal.  However, the test can only be done after the embryos are created.  The presumption is that embryos with genetic abnormalities would be destroyed.  To us, life begins at conception and to discard children simply to save ourselves the pain of enduring their lives is unthinkable.  We would not have aborted Annabelle had we known she had SMA.  Her life was so short, yet she impacted many.  We have experienced great pain, but would never trade a day of her life to be free of that heartache.

4.  Adoption.  Something we had never considered before suddenly came to the forefront of our attention.  We hadn't been researching long when we discovered Embryo Adoption...it's where the world of IVF meets the world of adoption and they come crashing together into a pretty amazing opportunity.

We don't know exactly where God is leading us, but He's made a clear path in a direction we had never looked before.  With faith, leaning on the prayers of many, we are putting one foot in front of the other.

For I am about to do something new.
    See, I have already begun! Do you not see it?
I will make a pathway through the wilderness.
    I will create rivers in the dry wasteland.
Isaiah 43:19

Why did Jesus say no?

August was many things.  Empty.  Full.  Joyful.  Heartbreaking.

But every month is those things, really.  I knew, logically, that taking a break from the "world" was just that - a little break from which we would return and not much would have changed.  Yet, secretly, if I am not too ashamed to admit it, I hoped that it really would make a difference.  That maybe things would be easier after we survived THE month.  But, in most ways, it was just August.  I suppose that's ok.  A lesson learned, if nothing else.

Don't get me wrong, I think we got a lot from turning inward this month.  We had many good family moments and it really was refreshing not to worry about what anyone else was doing or thinking.  This may sound selfish, but for me it's part of moving forward.

There was a lot of anxiety as the days approached Annabelle's birthday.  August 16th was difficult, but not in ways I assumed it would be.  We chose not to celebrate corporately.  Instead, we took a family bike ride, picked up some flowers (M picked a large, pink bouquet), and took Annabelle's photo album to her grave to sit and remember quietly for a time.

On our way there, Makayla said with straightforward innocence: "Mommy, you just need to ask Jesus for Annabelle back."

It's one of those statements that makes time stand still.

"We did, sweetie.  He said no."

Oh how very imperfect and ignorant we are.  The thing that rocked me the most is that she's really right.  He could deliver her back just as easy as that.  I don't have a clue how it all works, I just know that we begged and the answer was no.  Not here. Not now.  So instead, we sat at a tiny grave and remembered her.  Makayla hugged me, patted my back, and said, "it's okay, I miss her too."  I cried for Annabelle.  I cried for myself.  I cried for Makayla.

The next day time stopped again.  "Why did Jesus say no, Mommy?"

"I don't know."  And so we continue to learn how little we really know.  How little we control.  How little we can even imagine.  I pray that Makayla maintains her faith - not just hope, but real faith, knowing that Jesus can heal, can perform miracles, even when His answer is sometimes no.

There are times when it's hard to see past the difficulties.  But there are other times characterized by smiles.  New memories for new photo books...This month also held many fun adventures and a lot of hope for the future of our family.

August

August is quite a month.

It is Makayla's birthday month.
It is Annabelle's birthday month.
It is SMA awareness month.
It's a month we're talking "off" from the world.

Before I disappear for awhile, I thought I'd leave a few comments on each of these things...

Makayla, sweet Makayla, will be 3 next week.  I can't believe that I've had 3 whole years of the joy of motherhood.  She has become quite independent, creative, and compassionate.  I love her with my whole heart and I am so grateful to be her mom.

10 days after Makayla turns 3, Annabelle should have turned 1.  This moment was so blissfully happy.

My heart is broken and I ache for her.  I long for what could have been...and yet I am also reminded that, had Annabelle been with us today, there would be no walking, no crawling, no care-free happiness that I imagine.  Annabelle had SMA.  And she would have had it today, had she lived.

I have wavered back and forth over the idea of awareness.  Awareness for what?  Awareness' sake?  What would have changed had we known about Spinal Muscular Atrophy before Annabelle was born?  What would be different if the world knew about it?  Even with all the support in the world, science is far from a cure.  And besides, how many eyes is this little post reaching?  Maybe a few people who, by now, have probably already heard (from me) those 3 seemingly benign letters: SMA...

But I don't think it really has much to do with finding a cure.  Or even about SMA.  We go about our daily lives, generally unaware of what others are personally struggling with.  We may hear the news, scroll through the FB and Instagram feeds, get a surface understanding of what people are up to today, and wish people would stop sharing viral videos or sad stories and just post a pretty picture (maybe that's just me).  But they're out there.  Real, deep, weeping wounds.  Not fleeting woes.  Scars that last a lifetime.

Look around.  You'll see them if you pay close attention.  They might be hidden by smiles - have you ever noticed a family at Disneyland pushing a wheeled contraption containing a child who is propped up, hooked up, obviously disabled?  Why are they smiling?  It's outrageous.  And yet there they are.  Because that is their life.  Don't pity them or avoid eye contact because it's weird.  Lift them up in prayer and thank God above that they are willing to do what it takes to make a life.  And it might even be hidden altogether.  Go look at pictures of Annabelle on my FB page.  Would you have any idea that she was dying?

Look at her beautiful face and remember her.  And then be kind to people.

That leads me to the last point.  We need a break.  I need a break.  We've been plugging along reasonably well.  But in some ways we've acted like nothing has changed.  Our family has changed.  Our church community has changed.  And we need to pause, acknowledge all that has happened, and take a breath.

So I'll leave you with the hymn that I've been humming all week.

1. Be Thou my Vision, O Lord of my heart;
2. Naught be all else to me, save that Thou art;
   Thou my best Thought, by day or by night,
   Waking or sleeping, Thy presence my light.
3. Be Thou my Wisdom, and Thou my true Word;
   I ever with Thee and Thou with me, Lord;
   Thou my great Father, I Thy true son;
   Thou in me dwelling, and I with Thee one.
4. Riches I heed not, nor man’s empty praise,
   Thou mine Inheritance, now and always:
   Thou and Thou only, first in my heart,
   High King of Heaven, my Treasure Thou art.
5. High King of Heaven, my victory won,
   May I reach Heaven’s joys, O bright Heav’n’s Sun!
   Heart of my own heart, whate’er befall,
   Still be my Vision, O Ruler of all.

Innocence Lost

The hardest pictures for me to look at are the ones before we knew about SMA.  There is something about the innocence in our smiles, the carefree happiness, the joy without worry...I'm envious of our past selves.

Today at VBS we talked about Creation...It might seem silly, but I feel a little bit like Eve.  One moment she was secure, content, innocent.  And then she wasn't.  There are obvious differences in our situations, but I can empathize with the ache she must have felt to turn back the clock, to start over.  For us though, no decision could have changed Annabelle's fate. And my heart rips a little each time I look at pictures of my growing belly.  She was so safe in there.  And yet she wasn't.  The disease that took her from us was already doing its terrible work, even from within.

I have wanted to write several times this month, but my thoughts are confused.  I am pulled in different directions and I can't seem to quiet my mind long enough to organize the chaos.

As we approach August I am so terribly sad.  We should be planning a 1st and 3rd birthday bash for my August girls.  Makayla is so excited about her birthday - she declares her plans to all and is liberal with her invitations!  I think about the little play date we had for her last year - it was a billion degrees and I was 40 weeks pregnant, but I was so happy.  This year I don't feel much in the celebration mood, but my little girl is going to be 3.  She wants a strawberry cake and games.  And strawberry cake and games she will get.

8 days later we will remember the day Annabelle was born.  But she won't be here for us to celebrate.  And I am so very sad.  I don't even know what else to say.

Ryan makes a video slide show every year - it's a big deal and he usually shows it on or around new years.  2013 remained half-completed for a long time.  But this weekend he finished it and we were able to sit and watch it as a family.  The hardest parts are still the pictures of before our innocence was lost.  I remember the pukey weeks in winter, my growing belly in spring, and Makayla's growing excitement in summer.  You know what she wanted most?  For Sister to sit in the shopping cart next to her.  But she never did. And that ridiculous little detail breaks my heart.

We have had many happy times since we learned about SMA.  We had happy times with Annabelle, and we have had happy times since she died.  But something struck me as I watched last year in review - something I hadn't felt before - a sense of guilt over the smiles that came after her death.  Family "squish" pictures that should have 4 silly faces, but only have 3 grinning ones...and then there are times like now when I just can't imagine how we can smile without her here.

Right now is "nap time."  Makayla is in her bed belting out "The Big God Story" and teaching her dollies to dance.
Jesus loves me,
made all I see,
wanted me to be
part of the Big God Story.

And I am thankful for the happy times, and for Makayla's sweet innocence.