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.
-----
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!”
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