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.

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.

There isn't a manual

You could say it about a lot of things, but it's true...there isn't a manual for this stuff.  No one prepares for living with the death of their child.  I have spent plenty of time fussing over what other people say (and should NOT say), but I've been struck with the fact that, often, I don't know what to say.

How many children do you have?  Is Makayla your only child?

I've been asked these questions many times - it's just polite banter.  The grocery clerk, the mom at the park, the server at a restaurant, even strangers just passing by - I never noticed how often people asked these kinds of questions until I realized I wasn't really sure how to respond.

Do I awkwardly avoid the question and redirect the conversation?  Outright lying minimizes Annabelle's rightful place in our family and breaks my heart so I'd never do that.  Do I tell the truth?  Of course.  Why would I lie? I have 2 daughters.  Makayla is a big sister.

Oh, is the little one home with Grandma? or How old are they?

No one means a thing - just normal chit-chat.  I can't lie...so do I enter the uncomfortable realm of the truth?  It kills the atmosphere, no matter what.  (For the record, I'm not the least bit afraid to share about my beautiful Annabelle, and I will discuss just about anything in the right time and right place...but these passing conversations with acquaintances are tricky to navigate.)

No, she passed away in October.  or Makayla is almost 3 and Annabelle was 2 months old when she passed away.

There are a few ways people respond.  Some people aren't really listening.  It's true - I've gotten the strangest follow-up questions that make it abundantly clear my words have fallen on deaf, or perhaps just distracted ears.  Just layering on the awkward...Some seem appalled by their own ignorance and apologize profusely for asking...ugh, now I feel guilty.  Others launch into 2nd, 3rd, 4th-hand stories about friends (I've yet to encounter another stranger who has a similar story...perhaps we just know not to ask those innocent questions).  On more than one occasion, I've been subjected to long stories about late pets...can I just say that this tests the limits of my composure?  No.  No.  No.  I don't care how long Brixie was in your family, it isn't the same.

Most of the time, it's awkward.  One or the other becomes overly apologetic (can you picture that pity face?) or overly dismissive just to get through a few minutes of meaningless conversation, and both are relieved when it's over.  I don't blame these people and I hope they don't blame me either - there just aren't 5 simple steps to follow.  But - and it's a really big but - there are some out there who can handle such interactions with incredible grace.  They can quietly share their condolences, and I can thank them for their kindness and experience relief in being able to share the truth.

I had one such interaction just last week.  Let me just say that being able to talk with someone in passing (not the open heart conversations you have with your closest friends), but also honestly without destroying the day...that was such a huge gift.  She wasn't appalled by my honesty.  She was sorry, truly sorry, but also respectfully interested.  It's ok to ask what happened.  Do I want to pour out the details at the grocery store?  No.  However, if you want to know, it's ok to ask.  I promise, I have the short version, too.  It's not going to make me sadder.  It's not going to re-open wounds.  They're already open.  And, frankly, if they've truly healed, then poking them won't hurt any more than usual.  Tears are ok.  They're not necessary, but they're ok.  Sobbing in public - weird.  Probably need to deal with something if there's weeping going on at random (this is why church is often SO hard for me).  And the best way to respond when you don't know what to say is to say nothing at all.

The long and the short of it is, I don't expect anyone to know how to do it all.  I just realized that I've learned quite a lot along the way and, rather than writing a scathing book about the ridiculous ways people do respond, it would be more productive to share the good examples.  (I'm not saying I'm above writing that book though...) At the same time, maybe it would help the world to know that we don't know how to do it either.

Not your average 5k

On Saturday I ran my first 5k.  It wasn't glamorous.  It wasn't impressive.  But I ran the whole way, and I finished.

A couple months ago, Annabelle's nurse e-mailed me a flyer for a 5k event benefiting Trinity Kids Care.  Considering that, while pregnant with Annabelle, I had declared my goal to run a 5k in her first year (and the fact that months had come and gone with no commitment to prove it), it seemed perfect.  I began talking it up to family members and composing a support letter.  I didn't give it that much thought, but I assumed I could raise a few hundred dollars for a great cause and complete a personal goal at the same time.

It wasn't long before I had doubts.  I had never asked for monetary support for anything like this before.  Even scarier was asking people to join our team - and I blasted the support/invite to anyone and everyone.  It is remarkably nerve-wracking to send out requests with no idea if there will be any response - I wavered between excitement and self-doubt.  However, I didn't have to wonder long before I got a message from a dear friend...a message that turned into the donation of 65 custom shirts for our team and supporters.  

I have to stop here and publicly thank Briana for coordinating the t-shirt project, Nate who donated his time and talents to design the shirt, SolidT who did the printing and gave us 15 extra shirts to make up for a slight delay, and the generous donor of the money for the shirts which meant 100% of the sales went to Trinity Kids.

Then I had new doubts - how was I supposed to sell so many shirts?  Would people want the shirt even if they weren't going to participate?  About the same time, we began getting donations...I had no idea how many would wish to give.  Perhaps it gave people a tangible way to help.  Whatever the reason, and in spite of my nerves, I knew from personal experience that this was a worthy organization - if any deserved me stepping out of my comfort zone, it was Trinity Kids.  

While we're on the subject of comfort zone...can I list the things that required me to LEAP outside of mine in preparation for this event?

1. Running 

2. Asking for money

3. Asking for people's time 

4. Gathering people together from all areas of my life, and even some I hardly knew

5. Inviting people in to something very personal

6. Did I mention running?

I could probably think of more...the point is, it wasn't easy, but it was good.

The day we announced the shirt sales, I was floored by the response.  The first 50 shirts were spoken for within 36 hours and we had requests for more.  When the printing was delayed and SolidT offered us 15 extras, there were only 3 left by the next day.  Wow.

On the morning of the race, Team Annabelle was unmistakable.  I will treasure this memory.

There were plenty of reasons NOT to participate in this event.  Our grief is fresh - no one would expect us to do this.  It's hard to balance the hooplah of an event with the tragic reality of why we know about children's hospice in the first place.  It was emotionally and physically exhausting to coordinate, prepare, worry...just look back at that first picture of us crossing the finish line - I'm not beaming triumphantly, glowing with pride.  I'm beet red and dripping with sweat.  We didn't raise money to find a cure for SMA.  We didn't provide hope for another family fighting SMA.

So why did I do it?

Just because there isn't a cure, doesn't mean there isn't healing.

In the group pictures above, there are family members, close friends, acquaintances.  And they all came to show us that Annabelle is loved.  We are loved.  This event did not take away the pain of Annabelle's death.  But it's ok to smile sometimes; to rally together and remember that she has left a significant impact on the world.

Look at that dreadful picture at the top again.  See Gay in the background, cheering us on?  She and her team give tirelessly to those who have nothing to offer.  So we'll be back again next year...because this is part of our story.

Annabelle's Story: God's Mercies

To family and close friends who walked with us through tragedy, God's mercies in Annabelle's life and death are now apparent.

To those on the outside - those who don't understand SMA, or perhaps those who don't understand God - they might be obscure.  

I share these with you not to diminish the pain we experience, not to paint a silver lining on the storm we are still in, not even to give permission to anyone who might be anxious to say, "see, in all things He works for the good of those who love Him."  Instead, I share them to point to a God who loves us, who has experienced the pain of loss, and who can walk along side us in our suffering.

We weren't alone::
When Ryan put together the slide show for Annabelle's service, one of the songs he used was "Never Once" - an amazing song which he chose to reflect that God was with us and that our family and friends were with us the whole time.  We felt alone plenty of times - and still do.  That is the nature of grief.  But we know that we are not alone.

They were there to celebrate Annabelle with us, to clean our house and fold our laundry, to bring meals, to pray, to hold our hands, to smile for photos, to weep, simply to let us know that we weren't alone.

Last week at church, a friend pulled us aside to tell us - through tears and visible pain - that during service, he had felt the weight of what we had been through.  But, in the midst of the sorrow, he saw Annabelle's face clearly and he saw her walking - yes walking - with Jesus.

(Now, if you don't have a lifelong relationship with Christ, this might sound a little too magical or even corny.  But if you know with certainty that God is in Heaven and those who believe in Him will enter into His glory, then you just might be able to understand the beauty of this picture. Annabelle is whole, perfect, and strong in Heaven.  Not sitting in puffy clouds with wings and a harp.  In the presence of God.  She must have so much to teach me.)

The miracle of nursing::
I prayed for the big miracle - that God would heal Annabelle.  No one would fault me for a purely selfish desire to see my baby restored to perfect health, and able to live a full life here in our family; but I even tried to pull from the deepest places in my heart the pure desire for that miracle to be entirely about bringing glory to God - the doctors would be amazed, they would have to believe.  But sometimes I just didn't have the words, the strength, and focus to pray for the big miracle.  Sometimes I felt defeated by the knowledge that it would come to nothing - she would die and I couldn't stop it.  (We can talk all day long about faith the size of a mustard seed and moving mountains, but this is what I experienced.)  What I managed to have endless energy for was the prayer that she would continue to eat well.

The ability to suck and swallow is one of the first things that SMA babies lose.  Eating is not the only thing affected by this, but it was the one I could most easily focus on.  Nursing is infinitely important to me.  And God granted me a miracle.  Annabelle nursed just a few hours before she passed away.  We had experienced a few difficult feedings, but she was 100% breastfed at home (she had 3-4 bottles of formula in the hospital) and that morning she ate like she meant it.  The nurses said it was not supposed to happen that way.  I suppose she was giving me one last gift.

Annabelle's life and death::
I've written some about living with our sweet one - the point is, we lived.  We didn't know how long we would have her, but we knew that at some point we would be bound to the home with tubes and breathing treatments - minimal efforts to ensure her comfort.

I've not written much about her death, not because there is nothing to say (although, perhaps there is nothing to say), but because I don't want it to darken the story of her life.  I don't include this in a post about God's mercies lightly.  On October 24th, we woke up and had a routine morning.  The girls played in the kitchen while I cleaned up breakfast.  Makayla traced Annabelle's feet with markers and helped her clap her hands.  I have video of them together at about 8:30. The nurse came over for her weekly checkup at 10.  Annabelle died at 10:45.  I tremble to write that God showed us great mercy in this; but He did.  It wasn't supposed to happen that way.  She decided she didn't want tubes or suctions or morphine.  She never once had any medication.

Ryan and I::
So many things sought to pull us apart.  The back and forth from the hospital, the lack of sleep, the differences in the way we process and respond, the fact that the condition is genetic (the implications of this are enormous)...I could list many more.  We could have pushed each other away.  We could have yelled and screamed and blamed.  But we came together.  Decisions - difficult, gut-wrenching ones - were made without argument.  In the quiet times after Annabelle's service, when we could have just drifted apart, we grew even closer.  We had grace for one another when we were on different pages of the same book - one deep in sorrow, the other finally coming up for air.

Grief highlights the negative aspects of individuals and relationships.  If you know me at all, you know that I am impatient, demanding, pushy - so it is not with my own strength that I have managed to sit quietly, waiting.  I have by no means been perfect in my grief - and I suppose I'm deserving of a little extra grace - but what could have caused me to explode, simply didn't.

Makayla::
Oh my goodness, Makayla.  I can't even begin because there would be no end.  Just look at her.  Hear her sing.  Observe as she sweetly mothers anyone and everyone around her.  She is amazing.

Because of the Lord’s great love we are not consumed,

    for his compassions never fail.

23 

They are new every morning;

    great is your faithfulness.

24 

I say to myself, “The Lord is my portion;

    therefore I will wait for him.

Lamentations 3:22-24

Annabelle's Story: Living

"Cherish every moment."

We hear this all the time.  Since I had Makayla I have heard this advice from strangers weekly.  It's a really nice thought.  Of course, we hope to live in such a way that doesn't minimize the simple beauty of the day-to-day, particularly with your children.

Can I be real though?  I wanted to spend a lifetime with Annabelle, not celebrate her weeks and months because I knew there would not be many.

Oh we made the most of it - we threw a family party for her 1 month birthday and Ryan's 31st combined.  And we had a house full of friends for her 2 months.  It was wonderful and I am forever grateful that we made special moments and celebrated the time she was with us.  But part of me hated it.  It was one more reminder that we were losing her.

Annabelle 1 month, Ryan 31.  Great-Grandpa Jack (seated) passed away 2 days after Annabelle did.
This was the last time the family was together.

But what can you do? We settled into routines.  We went on family adventures.  We did our best to live our lives and to love what we had rather than focus on what we were losing.  But we grieved.

We did all the things that we would have done had Annabelle been healthy, and probably even more.  Erin came to visit as often as she could.  We took a billion pictures.

Annabelle didn't do well in the car.  She was the sweetest, calmest baby, but the car seat positioned her in such a way that pressure on her lungs and restriction of her airway made it hard for her to breathe.  Sometimes she was just fine, other times she was not.  It was hard.

A nurse came each week to check on Annabelle - her weight was steady, she seemed the same, so there was no more to be said.  When she was about 9 weeks old, we had a suction machine delivered to the house.  SMA causes respiratory issues and often babies have a difficult time clearing their mouths and throats of normal secretions.  Similar to what dental hygienists use, the machine could help us clear her mouth and throat if necessary.  We were comforted to have something there if we needed it...at first.  It didn't take long for the truth to set in.  The machine is small, hardly intimidating.  But it represented the huge, daunting reality that she was so weak, she could even choke on her own saliva.  We tried using it once.  We thanked God that she didn't need it again.

At home, we did all the things that families of 4 do...I would wrap Annabelle up in the Moby* and we would join Makayla in her many activities.  We colored, read, went for walks...and the girls bonded.  Sometimes I wanted to "protect" Makayla from bonding with her sister.  It might have made things easier in some ways.  But it would have been terribly short sighted and entirely unfair to each one of us.  Annabelle received all the love and attention a little sister could possibly ask for (and probably a lot more).  Makayla got to pour out her love on her sweet sister and forever has those memories...and we have the memories of seeing our girls together.  The social workers, the nurses, the people who are supposed to know - they all told us that Makayla wouldn't remember.  She would have a vague imprint of loss.   She would probably act out at some point in confusion over something missing.  But she wouldn't really remember details.  But she does.  There is no way I can describe to you the simultaneous beauty and heartbreak of watching Makayla take her dolls and act out times she spent with her sister.  She asks about her daily.  And she grieves with a maturity no one could have anticipated.  Our advisers were not misinformed.  They have years of experience to tell them how it should be.  But Makayla is different.

 


*The Moby - you may or may not have any experience with this mile-long piece of unimpressive fabric.  With Makayla, I disliked it - it was hot and awkward and required far too much effort.  I used it here and there because it served its purpose, but my overall impression was "eh."  With Annabelle it was a necessity.  Because Annabelle could not support her head at all, anything I carried her in needed to be entirely supportive of her neck - no structured carriers could accomplish this without significant modification.  In addition, her neck needed to be in a position that didn't block her airway, so even modifications were insufficient.  With the Moby, I could wrap her up in the exact position she liked best, cover just the back of her head to keep it secure, and thus she could go about the daily routines with Mom and Sister.  I can't say enough about how important it was.  In fact, after Annabelle passed, I tried to collect wraps to donate to other families with infants in hospice care - our nurse was glad to pass them on directly to families who needed them.  Unfortunately, the mom sale and trade sites on FB didn't seem to believe that I was really going to donate them, and took down my requests.  I got a couple from friends and cleared the wrap section at the local second-hand store.  It felt good to pass along a tool that I knew would benefit other families in similar situations.

For all the talk of wraps, however, Annabelle was really Daddy's girl.  No matter what her disposition, he could scoop her up and she would be perfectly content.  He carried her in what looked to be the most awkward position: draped over his forearm with his hand supporting her neck and covering her chin.  No matter how awkward it looked, she loved it, and only Daddy could really do it.  He was often a hero, careening around the house with both girls - one content, the other giggling wildly.

Don't let his expression take away from his amazing composure and confidence as hero to 2 princesses.

What more can I say about living while your child is dying?  We did our best.  That is all.

What is SMA?

Spinal Muscular Atrophy

We had never heard of SMA before Annabelle was diagnosed.  The research is unpleasant to put it nicely, but I've listed some basic information that will help explain her condition.

SMA is a motor neuron disease which causes weakness and atrophy of the muscles.  Those with SMA are grouped into four types (I, II, III, IV) based on the highest level of motor function they express at the time of diagnosis. 

Outwardly, it affects muscle tone of the neck, arms, and legs.  Breathing and swallowing are also accomplished with muscles which puts SMA patients at huge risk for respiratory problems.

Annabelle's hypotonia (low muscle tone; weakness) was what concerned the doctors.  Very few conditions cause distinct, prolonged hypotonia in infants, so there was a short list of disorders to test for.  The fact that she ate so well confused the doctors - in patients her age, weak suck and swallow reflex is one of the key indicators.

SMA does not affect cognitive functions or touch or pain receptors.  

Annabelle could feel our caresses and cuddles as much as any other baby.  She was a very happy girl which is good indication that she didn't experience excessive pain.

It is a rare disorder occurring in approximately 8/100,000 live births.  It is one of the most common rare diseases and the #1 genetic killer of infants.  It is caused by a missing or mutated SMN1 gene.

Surprisingly, 1/40 people are genetic carriers of the recessive trait that causes SMA.  When 2 carriers of the recessive trait conceive a child, there is a 25% chance of that child expressing SMA, and a 50% chance of that child being a carrier.  Carriers are not physically affected by the trait.

Ryan and I are both carriers of the recessive gene mutation.  We have no family history of SMA and there was no way we could have known that we were carriers until we were genetically tested.  Even amniocentesis done during pregnancy does not routinely screen for SMA (although we didn't have this testing done) so nothing could have warned us about what was to come.   Now, however, we are aware and this knowledge decisively impacts our decisions regarding future children (you can read about Our Options soon when I reestablish that link).

Let me take this moment to say that, despite the pain and sorrow we have experienced, I am so grateful we walked into parenthood ignorant of our genetic propensity to pass on SMA.  Had we been tested prior to having children (some advocate this), we may never have taken the risk which blessed us with 2 beautiful daughters.  Yes, knowing has changed us, but I would not advocate diving into your genetic makeup unless you have reason to believe there could be a significant risk.

Find More Information:
Families of SMA
Fight SMA

Annabelle's Story: Home at Last

The relief of being released from the hospital was quickly diminished by the terror of sharing horrible news with our families.  My parents were home with Makayla, excited to hear that Annabelle was coming home.  They had made a Welcome Home sign for the door.

It is impossible to detail the heartbreak we brought with us.  "She has a terrible disease" we repeated to those who needed to know.

The onset of grief is much quieter and far less cathartic than how it is portrayed in the movies.  There was no yelling. There was no throwing or crashing or outbursts of any kind - these all provide release; we experienced none.  There were tears and there were questions; the kind without answers.  Oh God, have mercy on us.

But Annabelle was there with us.  She was alive and beautiful, and so we lived.  We had a family party for her 1-week birthday.  We didn't talk about her like someone already gone.  We took pictures and everyone smiled.  And the smiles were genuine.

Gay Walker from Trinity Kids Care - who had heard my desperate rejection of hospice care the day before - came to see that we were settled in.  She would take our case and provide the support we needed in order to continue living even in the shadow of death.

What we never got was the answers to the questions that plagued us - when? how? You can pretend it doesn't matter.  You can say that you're just going to enjoy every moment and live in the now.  But you can't; you always want to know.  I'm sure knowing would not have made it any easier, and since there was nothing anyone could tell us, we just did the best we could.

When Makayla came home from the hospital, she slept next to my bed for a month before "graduating" into her own room.  Annabelle spent the first night home in her own bed, in her own room - not because I didn't want to be beside her every moment (I so desperately did, and spent many nights in her room), but because we wanted her to get to use her room for as long as she could.

Annabelle’s condition caused muscle weakness, so she didn't move very much, but then most newborns don’t. In so many ways, she was a typical baby, and if you didn't know, you wouldn't guess that she was dying.

We went to the beach, Disneyland, and Oak Glen.

Makayla was over the moon to have a sister.  She held her hands, taught her signs, traced her feet with crayons, sang to her when she cried, sat with us while she nursed, and helped me change her diapers.  The girls bonded instantly, and I feared the day I would have to explain why they couldn't play anymore.

Between visits from hospice nurses, we played at the park, did crafts, and spent time with family. From the outside, things looked wonderful. Our hearts were breaking, but Annabelle deserved a full life.

When we dedicated her at church, we fretted over what to say - how could we share such news with our church family without casting a shadow over the sweet life she was here to live?  So after much thought and prayer, we kept it very short and very simple.  And we shared her life verse from 1 Peter 2:

Therefore, rid yourselves of all malice and all deceit, hypocrisy, envy, and slander of every kind. 2 Like newborn babies, crave pure spiritual milk, so that by it you may grow up in your salvation, 3 now that you have tasted that the Lord is good.

The Lord is good.  He MUST be good.  I do not say this lightly, or thoughtlessly.  I do not say this because I've always gone to church so I guess I better believe in God.  We have seen what it means to fear the Lord.  He is mighty and powerful and capable of anything.  We have looked into the face of death and know that Christ overcame it.  God did not give us the miracle we hoped for.  I don't know if I'll ever know why.  There are all sorts of canned answers, but none of them are helpful.  He chose not to.  That's the only answer that makes sense.  That doesn't mean He wasn't merciful.

Annabelle's Service

We knew Annabelle's story needed to be heard, so we invited everyone to hear it.  We wanted to honor Annabelle and we wanted to share the Gospel and I truly hope we accomplished both at her service.  

Ryan's created a beautiful slide show tribute that allowed others into the 2 months and 8 days we had with Annabelle.

Sitting down to consider what we would say was enormously difficult.  Many nights were spent crying in front of the computer attempting to put into words the life and love we shared with our beautiful daughter.  In reality, it was an impossible task so I decided to use what I had written to her already even though I had only intended those notes for her.

---

Thank you all for gathering to honor Annabelle’s life.  How can we convey the duality of our lives - the truest happiness of having two beautiful daughters; the deepest sorrow of losing one?  April began writing to her early in the pregnancy, and excerpts from those notes help to reveal how Annabelle’s story is our story.

12/27 We got to see you in your first ultrasound today!  Daddy and I are so excited about you joining our family.  I’ve been feeling very sick, but since I was sick with your sister, it’s almost reassuring that things are going well…when I think about all the joys of having you, the nausea fades.  I am so blessed to be your mommy.

1/1 I crave apples.

2/9 Dear baby girl, we got to see your sweet face in the ultrasound.  You were dancing around the whole time.

We had never heard of SMA.  Throughout the pregnancy, we prayed for the health and safety of our new baby with no doubt that everything would work out.  We had done it once, and we knew what to expect.

4/1 Daddy felt you kick today!

5/11 I’m sitting on the couch watching you do somersaults in my belly.  You are very active and I love it…You are going to steal everyone’s hearts – mostly your sister’s!  She loves you already and can’t wait to have a new playmate in the house.  I pray that you will become very close.

6/10 On Sunday a woman prayed over us at church and I wanted to share her words with you.  She prayed that I would have no fear; that I would trust the Lord with this pregnancy, and that you would be safe and healthy.  You are loved and you are safe because I trust God.  He is giving you to us for a great purpose. As much as Daddy and I love you, He loves you more.

Spinal Muscular Atrophy (SMA) is a genetic disorder that prevents muscle nerves from regenerating.  Annabelle lacked a simple protein that made the difference between life and death.    Routine genetic screening does not check for SMA.  Few people know about it because those with the SMA do not live long enough to be noticed.   Annabelle had Type 1, the most severe form, which can be present before birth.

7/20 I had gotten used to you moving a lot – big movements that would make my tummy dance.  Now, I only feel hiccups and smaller movements like you’re running out of space.  It certainly is different than what I remember with your sister and I am anxious to meet you and learn your personality. 

8/14 I thank God for being able to carry you in my tummy all these months, and I am eager to see your beautiful face and kiss your sweet cheeks…for now I will try to enjoy each little hiccup I feel.

On August 16^th at 4pm, Annabelle Faith was born over 8 lbs, and beautiful.  The doctors noted that she wasn’t moving much, but it was just considered trauma during birth.  Annabelle ate well and slept well, and we were expecting to go home a day early – we knew what we were doing this time.  But the doctors delayed our plans – Annabelle still wasn’t moving enough to be released. 

Days passed and she was transferred to CHOC for further examination. I thought it was extreme, but “better safe than sorry” I told myself.  Frustration grew as we strained to hear any hints from the doctors.  We were not getting answers.  No one wanted to reveal their thoughts until the genetic test results, and then everything changed.  In a crowded conference room with plastic chairs, the doctors told us methodically that our little girl was not getting better; she was going to die.  We were discharged with all expediency to come home to a family expecting good news. 

And so began our double life: living, working, making beautiful family memories; crying out for mercy, wandering in the dark, fearing what was to come.

8/22 Beautiful girl, you are so sweet and easy-going, even when Makayla steals your pacifier and claps your hands together…she is also teaching you to sign and wave and she loves changing your diaper…Auntie Erin came out just to see you and is extending her stay so we can celebrate your one-week birthday…I don’t know how much time we have with you, but I know that forever you will be well-loved, and forever you will be my daughter, my beautiful Annabelle.  I pray for strength to be a good mom, for peace and clarity, and for a miracle.

Annabelle was so perfect and precious.  It was easy to forget the medical truth.  There were daily reminders – lack of movement, occasional struggles to catch her breath – but in between, she was just our perfect daughter.  What else could we do?

9/10 My sweet girl you are so loved.  I discovered that when your sister takes your paci, it’s so she can give you a big kiss, then she gives it back.  Grandma and Grandpa argue over who will get to hold you next, even after you pooped on Grandpa!  Yaya and Papa love you and request pictures every day.  We are already planning your 1 month celebration and the whole family will be there…We have chosen your life verse – a verse we hope will share a message with our friends, and family, and even strangers; one that will point to the beauty and purity of your life and encourage us to strive for the same purity.

We got Disneyland passes, visited the beach, went to the park, and tried our best to live normal lives.  We kept the news close, mostly so we could continue to live in the fantasy that Annabelle would always be with us.

We grew accustomed to visits from the nurses, but there were so many questions that never seemed to have answers.  When? How? We wanted to know, we wanted to keep building those expectations. 

9/11 I have taken to calling you “sister.”  It’s something I never thought I’d do, but I love how Makayla says “my sister” as she runs to your crib in the morning.  Today we had our weekly visit from your nurse, Miss Gay.  She is so tender with you and Makayla, and I am very thankful that she is here to help us watch over you.  You have opened doors to new relationships that may never have been possible without you.  I think it’s all part of the story you have to share with the world, and I don’t think I’ll ever know just how many people you will impact or how deeply you will affect them. 

9/13 You smiled at me!

9/14 Daddy loves you so much.  He is the only one who can calm you down without fail – he flips you onto your tummy on his arm and it calms you immediately…I am not brave.  I am not strong.  I am just a mom trying to love her babies and fighting the very present knowledge that I cannot protect them.  I am lost and I am weak.  But I have Jesus, I have Ryan, I have Makayla, and right now I have Annabelle.

Friends rallied around us in a way we never expected.  Most of the time we just felt un-deserving, like it was happening to someone else or we were just crazy and it wasn’t really happening at all.

9/28 Many days, I grieve the loss of the things we’ll never get to do, things I’ll never get to say.  I try so hard to appreciate the time we have…many have told me to enjoy every moment.  And it’s true – of course that is what we want.  But no one knows what that really means.  To go about our lives, doing fun things and making sweet memories, all while reality nags.  Still, we do our best…some days are very hard, my sweet girl.  I have to be honest about that.  I worry about you and desperately want to rescue you.  I am trying, and often failing, to trust God every day. 

We walked through the orchards of Oak Glen.  We even bought the girls matching Christmas dresses.

10/16 We celebrated your 2 month birthday with a house full of friends.  It was wonderful, but there have been many emotions this week.  The reality is I don’t want to celebrate each moment.  I want an entire lifetime with you.  You are my beautiful daughter, always.

10/23 You smell like apples today.  I love every bit of you.

Although Annabelle struggled from time to time, we were adapting. October 23^rd was the first time we realized that we were completely out of control.  After a strange breathing incident Annabelle momentarily passed out then came back seemingly unaffected.  We were hesitant to leave Annabelle alone that night, even though she was sleeping sweetly.  The next day, I lingered before going to work, reading to the girls and holding Annabelle.  After I left, the girls played in the kitchen.  Makayla traced Annabelle’s feet and drew pictures of the family.  The call came at 10 – come home.  At 10:36 Annabelle gave her last heartbeat cradled in my lap.  It was if she knew her time had come.  She passed without pain or drugs and with the love of her parents surrounding her. 

10/24 Oh my beautiful Annabelle, today we had to say goodbye to you…I held you and sang to you, and you waited just long enough for Daddy to get home.  The whole time you stared peacefully at us, as though you knew everything would be ok.  You had a full tummy and a clean diaper.  You were showered with kisses and held tightly…please forgive me for any moment I took for granted…you are perfect and strong in Jesus’ arms. 

11/1 You lived your whole life.  God knew your days before you were born, and your life was exactly as long as it was supposed to be.  Even still, as your mommy, I long for more time with you.  Thank you for being my daughter.  

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