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.
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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 16th
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 23rd 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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We were grateful for the love and support we felt at her service and we still pray that people heard what they needed to hear.
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