8 years. That’s what we’d been loosely promised. That’s what I’d been praying for, for the
last 6. And for some reason, the last three weeks of Ava’s life I had totally
convinced myself she’d live to be in her twenties. I’ve been battling with how,
as a mom, I just didn’t know it was going to happen that day. Shouldn’t
I have felt it when we woke up in the morning? Shock and grief are probably the
most powerful feelings we can have other than love, and I’m trying my best to
remember those are just earthly feelings. When Ava died, it was like I was
reading a really good book and I got so involved I had no idea I’d reached the
end until I read the last word. Complete heartbreak.
Although I don’t believe it every second of the day, and I
seem to be in constant need of people reminding me, there are more books to be
read and more stories to be written. I
may feel empty now, but Ava’s book is right there on the shelf. When I need to remember the story, I can
read it any time I want…through pictures, video, and of course you can probably
guess that I’ve written every memory down.
The night Ava was born, she was a little blue so that meant
an extra few seconds of her being away from my reach right away. That was the first time I’d ever experienced
physical emptiness. I stayed with her for about three hours after and didn’t
get to see her again until six AM the next day. It probably took two minutes for the nurses to roll Ava down the
hall to my room but it felt like a lifetime.
She’d lived in me for so long and I needed to feel her move. I needed to see her face. Hear her breathe. Smell her. Touch her. Every mother knows what that’s like. It’s not just a sense of pride that draws us
to our newborn babies, it’s that bond that never breaks. It’s responsibility, and completion, and
purpose.
As I mentioned earlier, the three weeks leading up to Ava’s
death were some of the best I ever had with her. I was thankful to be able to finish up her treatment for staph at
home with the help of a nurse, and not in the hospital far away from our
families. She’d spent most of this year
in the hospital and enough was enough.
She was beaming every single day.
I promise you I have never seen that little girl smile so much and for
no reason at all! Everything made her happy. Everything was funny. Well, with the exception of changing her
bandages. She was always a whiner at
getting the tape off, and this we thought was funny because with everything in
and on her body that should have been hurting, the tape removal is what made
her start swinging fist and sassing. J
She was growing. Her
seizures were at their most minimal.
She never spit up. She cuddled
me a lot and let me hold her whenever and however I pleased. Every two
days, the nurse would change the wound vac bandage on her back. I was amazed…in absolute awe…at how fast she
was healing. There was a small scare
about the infection spreading but it seemed as if the second everyone clammed
up, the problem went away. The best part of all of this was that for the first
time since she was a baby, it was just me and Ava, all day long. We couldn’t go anywhere so we didn’t. Our top priority was to spend time with each
other. I am so incredibly thankful that God planned it that way. I think that was his way of giving me peace
just long enough to remember and truly enjoy the last few days I had with her.
I know a lot of people knew about those three weeks, and how
wonderfully she was doing. I know you
felt that shock right away, too. I know
it’s left a lot of you with hard questions and I know you all loved her so
much, so I’m going to do my best to explain how Ava became a Heavenly angel,
although I’m still struggling to put pieces together myself.
On Wednesday, May 16th, Ava woke up ill with a
stomach bug. It was a typical kid
thing. It left her drained and a little
dehydrated, but nothing serious. I
probably complained too much that day about washing all the sheets and clothes.
Connor was obsessed with helping her that day, which was good because I needed
it. He gave her some medicine. He stood in front of her, fingers shaking at
her stomach, and threatened all the tummy bugs (as if there were literal bugs
wiggling around in there) to leave his sister alone, or else. Ava thought that was hilarious, and then Connor
scolded her for not taking his position as doctor seriously. Those two….J There was no fever, or anything else out of
the ordinary except hard seizures, but she had spit up all her meds and as
Aicardi moms know sometimes that’s just an unfortunate side affect. By nighttime, she seemed fine. I pump fed her Pedialyte only, bit by bit
over the course of an hour, just to help her feel better. She didn’t spit it up, so I put her to
bed. The next morning while she was
still laying down, she coughed and a little Pedialyte came up, but she didn’t
even act bothered so I never thought it went into her lungs. The spit up was clear, which I took as a
good sign. Sometimes Aicardi girls just
spit up like babies do, and the color and scent of it made me believe the bug
wasn’t there anymore. I sat her up in
her wheel chair and we started her day.
She frowned a couple of times, faces that will always haunt me now, but
even then I swear I thought, My God. That is the most beautiful frown. The frown went away though. She was sleepy but that’s normal for a girl
with her syndrome. Her vitals were
normal. Everything was good. I prayed over and over that the bug was
really gone, but continued to give her Pedialyte just to get her pepped up
again. It was Dylan’s last day of
school, and since I had recently been given permission to ease her out and
about in small trips, I decided to take her with me to drop him off at school.
I didn’t even care that she’d just had a tummy bug the day
before (sorry, parents). I knew that
these kids in his class had been praying heavily for her the entire school year
and some still didn’t know her. I
wanted Ava to see them. Of course, she
didn’t smile for anyone! She took a nap…silly girl….and woke back up when we
were out in the car. The whole day went
by and everything was fine other than her sleeping a lot. This could totally have been related to all
the “bug issues” and seizures the day before.
I gave her so many kisses. She
watched cartoons in the living room with Dylan when she was awake. Connor begged her every five minutes to come
upstairs and watch cartoons with him, and was heartbroken when I told him she
was too tired. I can’t believe I did
that. I should have carried her and the
wheelchair up there. They were THE best
of friends.
At around 4 P.M., Ava had a really hard seizure. I took her temp and noticed it was 103.7,
the highest I’d ever seen it outside of the hospital. I called the nurse and was told what I already suspected. It could have everything to do with the
seizure, and the exceptionally hard seizure could have everything to do with
the dehydration, which could take days to get over. I gave her ibuprofen and
waited to hear back from the nurse as she consulted the doctors and dietician. By the time she called back, Ava’s fever had
gone back down to 100, and minutes after that was at 98.8. I was completely convinced it was the
seizure that shot it up. Since she
hadn’t been spitting up, the dietician decided it was time to get the
dehydration taken care of even faster, so we increased her feeds and the feed
times came in short intervals. She kept
every bit of it down, but she kept getting sleepier and sleepier. I listened to her lungs, but there were no
more “junky” than normal. She wasn’t
coughing. She was a little pale, but it
was nothing out of the ordinary for Ava even when she wasn’t feeling bad. She scared many doctors in her time with her
ability to “lighten up”! I wondered if she may be coming down with pneumonia
but even then, I’ve seen her with less severe pneumonia and she looked and
sounded a lot worse than she did that day.
I was worried, but with the fever down and the Pedialyte staying in her
system I thought she just needed to rest.
Since it was after hours, I told Drew if the fever came back I would
take her straight to the ER. I wasn’t
even thinking we’d have to stay there over night. I figured it’d be a quick breathing treatment, adjustment of antibiotics
and we’d be on our way. Nothing major. Total routine.
Around 6:45 or 7, I noticed Ava making funny faces. I picked her up and she threw up all over
me. I won’t tell about the next fifteen
minutes in great detail, but that’s when Ava’s body decided to let her go. I’d
never seen anyone dying so I honestly had no idea that was happening. I knew it was serious. I knew that even though he was doing
everything right, I didn’t feel like the CPR Drew was doing was changing the
way her body looked and I couldn’t understand why. I believe now she was gone before we could even lay her down for
CPR. I knew it seemed to take an eternity for the ambulance to get there even
though I later found out it was minutes.
I guess the ENT’s knew right away that she had left us. I tried to follow her into the ambulance but
they wouldn’t let me go. Drew and I
beat them to the hospital and I thought that was so strange. I stood in the middle of the waiting room
waiting and waiting and waiting.
Everyone was staring at me and I hated them for it. A receptionist walked up to me and said,
“How old is your little girl?” I didn’t
remember even telling her it was a little girl I had on the way and I wanted to
know how she knew. The ambulance
finally got there and when I took one step forward the same receptionist
grabbed my hand and told me to follow her.
She put me in a family consultation room with Drew. The only time I’d ever been in one was right
before her diagnosis, when a neurologist was asking questions to help find an
explanation for her seizures. I thought
they put us there to get us away from the eyes of everyone else. I thought a doctor would come in and ask
questions about Ava’s syndrome, so they could figure out how to treat her best.
One by one more people came in. Khiron
and Sara-Claire. My parents. I had to
answer insurance questions. I was
frustrated that I couldn’t know what was going on with my daughter but I
thought if the staff is so calm then everything is going to be ok.
The ER doctor came in next.
I couldn’t look at him. He
hesitated and I knew then. He
said, “I’m so sorry but she was already dead when she got here.”
I don’t remember a lot during the time after that. I do remember when the coroner came in and
told me she felt like Ava had a seizure and aspirated. I could NOT believe how quickly that killed
her. Do you know how many times she’s
aspirated? It happened to her like any other kid falls down and scrapes his
knees. We’ve always had time to get it
out of her lungs by suction, or even her just cough it up on her own.
It was a while before we were able to go back and see
her. I couldn’t get over how beautiful
she looked. She was so distressed when
I’d looked at her last, and yet there she was, mouth open like she always did
when she snored, frog legs scrunched up.
She looked so perfect and so normal.
She even looked less blue. I
kissed her and I held her hands. She
felt different but she was still soft.
She was so incredibly beautiful. Dylan cried for an hour and must have
said “This can’t be real” a hundred times.
It wasn’t real. Not to
any of us. Everyone in that room was so
hurt. Everyone looked so sad and so
shocked. Everyone felt an angel leave
the earth.
Dylan surprised me that night. It was Connor who was her other half, but Dylan aged so much in
just a few minutes. He wouldn’t leave
her body. He kissed her forehead and
brushed her hair. He had questions
about what was done to try and save her, what happened, what we were supposed
to do now. He stayed with her until she
was taken away from the hospital, and then he stayed on a bench in the parking
lot right next to me. Drew told him it
was time to get up and go spend the night with his grandparents. He told him ok, but didn’t move. I’m not even sure how they got him out away
from there finally. I don’t
remember. Later, I found out that when
Connor had been told Ava went to Armor (heaven) but this time she wouldn’t be
coming back, he said very matter-of-factly, “I know! She forgot to take her
body this time.” Thank you, Jesus, for
giving them Armor while she was still alive.
What better way for a child to cope with the death of a sister. I am so happy I still have those two little
boys and I thank God I get to see them live out another day.
That night I experienced grief in full force. The way it feels to lose a child is probably
the closest thing to physical death we can experience. I was paralyzed. I thought I would never be able to walk again. Eat again.
Sleep again. Talk again. Breathe again. I thought for sure if I closed my eyes for too long, my heart
would stop, too. My whole body ached so
much that I felt if I moved it would totally shatter. I just knew I would never leave my house. I would never drive. I would never do laundry. Pack lunches. Make a to-do list. I
would never want to do anything ever again.
I started to want to close my eyes and it all be over with, but
grief wouldn’t even let me do that. Or
maybe that was God.
I didn’t sleep that for a few nights, and I didn’t eat for a
couple of days, but eventually I did.
Not because I wanted to, but because I had to. It’s amazing how a broken heart will tell us we don’t want and
need things that our physical bodies demand us to have. Life has to go on if God commands it.
I’m not going to lie, I still feel completely broken even
though now I know she is completely healed. Drew and I are grieving and taking
care of each other all at the same time.
That’s a hard thing to do. I
know it probably won’t be this way, but I feel like I will need counseling for
the next twenty years. I will live
every day of the rest of my life waiting to leave this earth and be with her
again. I will live but for every
second some of my heart will be missing.
I will wonder all the days of my life what it will feel like when our
souls hug. Will it feel as warm as it
did the first moments after she was born?
Will it be as warm as it was a few days ago when she nuzzled her little
face into my neck? Will she finally be
able to tell me what she’s thinking and what she feels? Will we be able to walk together hand in
hand to the feet of our Father and thank him for creating a mommy/daughter team
between us? And for making it last as long as it did?
I struggled for a few days with why I didn’t see it
coming. I’ve had a pretty good instinct about her health for all of her life,
but that one day I just didn’t know. I
hated myself for not just taking to the ER anyway. I kept it bottled up for two days and then the day we buried her,
screamed at my husband how angry I was that I wasn’t a good enough mother to
just KNOW. I’m so ashamed to say, I
took it as a slap in the face from God. She was my biggest responsibility. Was He telling me I couldn’t handle her
anymore? Had I not worked hard enough?
The last six years of my life had been filled with as much heartache and
frustration as it was happiness, but did I not thank Him enough for giving her
to me? I was horrified to think of life
without her. We didn’t get to finish
our plans, and it wasn’t fair. She
never got the new pink wheelchair we ordered for her 6th
birthday. Her hair was inches away from
finally being able to donate to Locks of Love.
Her front tooth was breaking through the gum. She was hours away from having the wound vac removed for good. I
was so wrapped up in those inappropriate feelings that I didn’t even see that
my husband was struggling with the same thing.
He did the CPR on her because I was too afraid and too shocked to. I saw him as a hero, and he felt like a
failure. We were so incredibly broken,
sad, and angry that night.
I’ve had time to really pray about it, and God please
forgive me for when my prayers turned into angry screams. I can’t promise that I feel this way every
second of the day, but for the most part, I’m able to realize that this wasn’t
about us at all. Ava was hurting. She was so very sick, even when she didn’t
act like it. Her body couldn’t do it
anymore and her soul didn’t deserve to live on this earth in that kind of pain.
God didn’t take her…He saved her. He
wasn’t punishing me…He was giving me peace of mind knowing she lives in the
most perfect existence ever now. Even
if I never find the words to explain it, even if I don’t always remember, I get
it now. We were all sent here with
a job to do, and she worked over time. My sweet little baby gets to rest
now. She gets to play. She gets to live! I can make a choice to be angry about it, or I can make a choice
to praise God for giving her a break and for making me strong enough to cope
with her absence. I did not like who I
was before Ava. I was shallow and with
out direction. She changed me so I
could later fulfill my purpose. Wow.
And speaking of Ava’s purpose, in the last few days I’ve
been totally overwhelmed at what people are saying about her. I knew she made and impact while she was
alive, but I didn’t really KNOW until after she passed. There were hundreds and
hundreds of people at her wake. Her
little guestbook capped out at 325 people, but I know of so many more who came
and didn’t have room to sign. Most
everyone told me a story of how she had changed their life. Ava showed mothers how to love more
unconditionally. She showed children
how to be more understanding. She
showed me my purpose and taught me what endurance means. What an awesome responsibility for a child
to be given. My Facebook and blog blew
up with sweet words. Drew, Khiron,
Sara-Claire and myself probably received a hundred calls and texts. It was love
being sent world wide. I’m the proudest
mommy, ever.
Everyone keeps asking me what I need, but I just need
Ava. My earthly body, my earthly
mindset will probably always feel as it I can’t function 100 percent without
Ava around but hey…fake it til you make it (to heaven, that is.) If Ava were here, I wouldn’t have this hurt,
but if Ava were here, she would hurt.
If Ava were here, we would wake up in the mornings together. I would mix her medicine. Prepare her meal. Change her diaper. Dress
her. Kiss her. Love her.
But Ava would hurt. If her death
was a trade-off, my pain for hers, how can I not thank God for relieving her?
I will tell you first hand this is not something parents are
equipped to experience without faith in or at least some understanding of
God. He is now my direct connection
with her. She is with Him every day,
and He is with me. My faith in God is
my only promise that I will be with my daughter again one day. Please think about that. It applies to all of us.
It was such a beautiful day for her funeral. Have you noticed how bright it’s been around
here every day since her death? My
Little Sunshine is in the sky.
Dylan and Connor took a little trip to the beach with
family. I know they needed the
break. Connor is very worried she will
be lonely without him and he will be lonely without her. I can’t tell you how many times he’s grown
frustrated in the last few days because he didn’t get to go to heaven,
too. We put Ava’s favorite stuffed
poodle in the casket with her. It seemed
appropriate. Connor looked sad when he
saw it. He let me know right away that
“her body that doesn’t move anymore” wouldn’t need it, but he did. He took it out and carried it with him at
the funeral. On the way home, he
snuggled up to it and said, “You miss Abuh too, don’t you pink poodle?” Poor, sweet little boy. But imagine what kind of man he will grow up
to be, having learned to love like that so early.
Drew and I drove to New Orleans yesterday. I didn’t want to be in the house, but I
didn’t want to risk seeing someone I knew and having to talk about it. I just wasn’t ready. We’d been promising Ava and the boys we
would take them for a day trip on Mother’s Day, but Ava wasn’t feeling up to
it. I know she would have loved
it. We ate po-boys on the street and
beignets at Café Du Monde. We walked
along the river and took our shoes off on a bench in Jackson Square. We walked around the city and felt the warmth of the sun full force. We spoke of and thought of Ava, but I didn’t
cry the entire time, well, not until on the way home…but it’s just a one day at
a time thing.
Thank you for loving my little Abuh so much. Wasn’t she something?