My Little Sunshine In The Sky

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 16^th, 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 6^th 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?

This Week's Unfortunate Adventure....

Last Friday night, Ava began behaving differently.  She was irritable and didn't want to be held or touched. By Saturday night her fever had spiked to 102.6, and she was beginning to have an increase in seziure activity. Sunday morning she woke up to another splitting back.

It had been 6 days since her last dose of an antibiotic, and during that time the strain of staph she'd left the hospital with grew again, this time even faster.  Two hours later, we made it to the ER in Jackson.  Her back was bubbled and swollen, and the skin (although dark red in this picture) was transparent enough to tell that underneath the fluid pocket was an exposed rod...again.

The surgeon decided almost right away that the rod had been compromised with infection and needed to be removed. This made for her fifth emergency this year.  Of course, it was upsetting for us to hear this news because 1) she absolutely needs those rods for support (read previous posts to know exactly why) and 2) we were told that with one rod out, the other would possibly need to be removed, because if it wasn't, there was a chance that there would eventually be too much pressure on the remaining rod, and that could cause the ribs to which its attached to break. With the removal of the 2nd and possibly 3rd rod we could have another problem.  The removal of another rod would obviously require making a fresh cut, and that could cause the infection to spread to even more areas on her back.  Any rod removed now could not be replaced again for at least another 6 months, so the decision would be semi-permanent.  All we could do is pray that the doctor would make the best choice for her during surgery.

After the surgery, he let us know that he only removed one rod, and he felt optimistic that there was enough slack in the remaining rods to keep them from breaking her ribs as she grew.  Two more incisions were made to get the rod out. There was so much dead tissue that needed to be removed, along with the fact she had still not had time to heal from her previous surgeries, that the hole left in her back was very large and very deep.  This is what the hole looked like two days after the surgery.  By this point it had already shruken by about an inch...which is amazing!

Because of the size of the hole and the staph that is still in her, a wound vac is being used to drain as much of the "gunk" out as possible. This picture shows a wound vac only over the hole, but by the time she left the hospital, one was needed over the bottom inscision as well.  She's back to sitting in her wheelchair most of the day, and gravity pulls the infection/drainage from the upper incision and hole down to the bottom and causes it to seep out from there as well, so covering that wound with a wound vac made the most sense. We are praying that within a month or a little longer, the wound will be closed enough that a skin graph won't be neccesary to finish closing the hole. Pray with us!

Ava received a very special visitor during her hospital stay....another Aicardi angel, Hope Martin. I should mention that this is a BIG DEAL because there are so few girls in the world with Aicardi Syndrome, and Hope is the only other angel she has ever met! I just know Hope will be an amazing big sister/mentor for Ava...they even have matching friendship bracelets now to seal the deal!

Here is Ava on discharge day!! She is fortunate enough to be able to come home with a month's worth of antibiotics, a portable wound vac, and a home health nurse. So far, the missing rod has not seemed to have adversely affected her health...hallelujah!

  Ava is home now and back to her old silly self!  She's keeping busy Skyping her Popi and telling him all about her week since he is away again with the Guard. Such a sweet little girl!

Thank you all for the prayers and good thoughts. You are all such a blessing to our family!