Nothing Can Prepare You

[DISCLAIMER: this was off the top of my head, it's grammar, syntax, tense, and point of view shift frequently, I hope you can keep up... I hope it gives you a glimpse into the mind of a grieving mother.]

No matter what you think you know, you're wrong. No matter how ready you think you are, you're not. No matter how long you've anticipated the moment you go from having a living child to having a dead one... you won't believe it actually happened when it happens.

Avalynn was technically healthy, but structurally wrong, which made her body work way too hard to stay alive. Her body eventually failed to function any longer. There was nothing else to do, medically, for her.

As her primary care taker, her mother, her nurse, her counselor, her play mate, her food machine, her bed, her comforter, and her fashion coordinator, I am lost. My 24/7 suddenly didn't exist the way it had for the last 107 days, or the last year. I didn't know who I was without my baby, as my life had become so dependent on hers although it seemed to everyone else that it was she who was dependent on me.

Avalynn was always known for her ability to communicate from the very beginning. She and I had it down to an art. We would know what each other was thinking and feeling, needing and wanting, fearing and loving, when we were fighting to live and when we were relieved we had beaten death that time. We knew when we were in dangerous territory, unfamiliar territory, or comfortable, baseline territory. We were never alone as long as we had each other. Everything would be alright as long as we had each other, because we could make it through anything together. It was what our entire relationship was built on, from conception to death. So we were good at it. It was as natural as breathing, as smooth as a slow stream. That is what I miss the most.

I miss the connection. I miss how easy and fulfilling our relationship was. There was pure, unconditional love and trust. More pure than I had ever known before.

Now that she isn't with me, I struggle, and it feels like I'm doing it alone because I am experiencing it differently. Luckily though, doing it alone and bearing it alone are two different things. I have been carried emotionally and sometimes even physically through life these days. I have had glimpses of really living again, although it feels like I'm the poor girl in rags on the street looking through the richest home's warm window on Christmas Day, witnessing the complete family, joy, decorations, and perfection I long for, and can see, but can't touch.

At times I think the worst part is that, because she was our first pregnancy and child, I got to experience what motherhood was. I got to feel what I have been waiting for and looking for my entire life, and finally found. I finally found where I belonged perfectly in the universe. I finally found where the massive amount of love I have been carrying around with me my entire life belonged. But then it was taken away. It wasn't just the carrot dangling in front of the horse's nose, he got a bite of the best carrot of his life, but never got to finish it when he thought it was promised to him. Then he looks around and all the other horses are eating their entire carrot, and he is left to wonder why.

Wondering why is not generally productive. There are not generally answers, at least not satisfactory ones. Because what you're really looking for is a valid reason it happened. Something that could give you understanding so you can experience closure and acceptance, instead of feeling things were unjust. Then you just feel grateful you got a bite of the carrot at all, because you realize there are plenty of horses that never even get a taste, a lick of that carrot, and you got not just a taste, but an entire bite. Then you think that the ones who can only imagine what it tastes like and can't have the carrot are better off than you, because at least they aren't tortured by the reality of what they can't have, just the fantasy they create.

& I know that we can eventually try for another child... but people, every child is irreplaceable, every child is uniquely beautiful. Having another doesn't fill the hole left behind by the one you lost...

Wondering why isn't a faithful inquiry. Isn't asking what we can learn from this a better question? Isn't finding purpose and making your suffering and her suffering better? Is that where healing will come? Is that how we can put the healing grace of God to use?

But no matter how hard you try, the why questions begin to burst at the seams, and there is no subduing them any longer...

Sometimes the what questions are the hard ones. What is she doing right now? What is the matter with me? What is the matter with other people? What is the matter with God? What if she is in danger because there is evil I can't protect her from? What if it happens again...

Sometimes the desperation is the worst part... feeling desperate for another miracle... the miracle you wanted, not just the miracles God provided...feeling desperate for what you believe to really be true, desperate for hope, desperate to feel useful, right, and guilt free, unashamed, and happy... desperate to feel alive...

And sometimes it's desperation for it all to be over. Whatever that may mean. Over because you healed quickly, over because you got an aggressive form of cancer, so you can die naturally and then see your baby again...over because someone found a way to make it hurt less... or desperate to feel the pain, to know you're alive because being numb is too much... that feeling everything was too overwhelming for you...Desperate to have your baby back in your arms, no matter what you have to do to get them there...desperate not to face another loss like this again, desperate to feel as strong as people think you are, desperate to believe the facade you put on social media... desperate to be understood, desperate to stop feeling desperate...

Then you question how you can feel so desperate if you have faith. You question how you can feel both desperation and gratitude, love and anger, peace and terror...

You wonder how you can have so much anxiety about life, but not about death... didn't it used to be the other way around.

You wonder if you will be different from everyone else the rest of your life because you have never felt such pain, and can't imagine it will ever go away... and honestly you wonder if it should go away, because even if you want it to sometimes, you also feel like if it does go away, you will forget or dishonor her, stop loving her, or be okay with a situation that is definitely not okay. Sometimes you wonder if you deserve to suffer because you couldn't stop your baby's suffering... And that feels like the worst, most unforgivable sin, because mothers are supposed to be able to protect and nurture their babies... so perhaps you weren't a good mother. Even though you were told by professionals that you were the best mother they'd ever seen... in your eyes makes it worse because it means you were inadequate for all that you were... That you can never be smart enough, pretty enough, loving enough, advocating enough to make a difference... so why do you exist at all...what is my purpose, what am I good for?

So nothing can prepare you for your baby to die... and nothing can prepare you for the journey to forgive yourself, for the things you feel deeply that you did, when your head and logic and friends, family, doctors, councilors, bishops, and others say you didn't... It is the biggest inner battle I have ever fought...

Or perhaps it is another version of the same thing you have been fighting your entire life... Who you really are versus who you think you are...

I hope that with a good support system, I can come to accept the things that happened, the lack of control anyone really had in the situation, and that I deserve forgiveness, and love once again... I hope that I will come to know and believe that my baby is safe, loved and cared for very well, but still wants her mommy... until I can be with her again...

Eulogy

When people get pregnant they often say they’re expecting. In our case, Avalynn was the unexpected, and often the unexplainable, the unpredictable, and the unbelievable. Her doctors called her a medical mystery, but we called her our miracle. Which is how we named her, Avalynn means desired life, or desired miracle. Twice during my high risk pregnancy we thought we had lost Avalynn. Once she didn’t show up on the ultrasounds at all, but ended up being very low and very small for what was expected, and once I was bleeding so much they suspected miscarriage. In both cases my daughter and I survived. There have been many other times in her life where, due to conditions related to her abnormal skeleton and small lungs, she would turn purple, cold and limp. We had many difficult days and nights where it was always about keeping her alive. But knowing my daughter usually pulled through, rather than calling these episodes what they were medically, I usually told Avalynn to stop punking mommy, that she scared me. Nearly every time she pulled through she would give me the biggest smiles and flirt with her coo’s. Sometimes she was saying, “Gotch ya” others she was saying, “Yeah, that was a rough night, I’m glad we made it.” And other times she simply said, “I love you, thank you, it’s ok, I’m alright, and hello world.”

That was the thing that made Avalynn who she was. She smiled from the very center of her being, and it shined through even the toughest of times. She endured, and she endured gracefully. She comforted and reassured. She was intelligent and funny. She was curious and faithful. She was trusting, and a fighter. She smiled up until 4 days before she died. She struggled a lot then, was very tired and experienced more discomfort than she had most of her life, there was a lot of titrating medication, and holding her where she was most comfortable…. Where she could hear my heartbeat. I asked Dr. Jones at one of his visits then, why she wasn’t letting go when it was obviously time, and we had said our goodbyes and given permission, etc. His answer will stay with me forever. He said, “Well If I was a part of your family, I wouldn’t want to leave you either.”

We decided as a family early on that we didn’t want to survive, we wanted to live. I felt very strongly we should connect her to nature, and show our daughter that the world was more than the machines, medications and hospitals that helped keep her alive. We wanted to teach our daughter why it was worth living. We wanted to nurture her. We went to the Houston zoo, to sylvan beach, swimming in Mima’s pool, crawfish boil’s at Papa’s work, she went to church one week, visited the LDS temple in Spring, she colored on my tablet with her feet, we read books to her, and watched movies and documentaries about the universe, and even the week she died we took her outside into the sun, where we laid down in the grass and flowers with her and soaked it all in.

Avalynn had some favorite things, she was a strong spirit, an old wise strong spirit. Her favorite songs included, the ABC’s, but you had to jazz them up, Scarborough fair,  Old Danny Boy, Jackson Five’s ABC, In your Arms, by Meredith Andrews, I need thee Every Hour, Head Shoulders Knees and Toes, This little piggy, Daddy’s Little Girl, Bob McFerrin Don’t Worry Be Happy, and anything Bob Marly, or the piano guys. We had quiet sacred moments, fun normal laughing baby moments, and amazing dancing parties as a family with these songs.

She liked to put her feet in the sand and grass. When we went to the beach she hadn’t woken up in almost two days, but the moment we put her feet in the sand her eyes shot open and she took it all in. Every experience was a blessing, I loved watching her explore new things, endure the hard things, and connect with the world around her.  She loved to pull her oxygen cannula and NG tube off and out. She liked getting her nails done, and wearing new outfits and head bands. That’s actually what inspired her last smile. She loved people more than things, and communicating. She loved her daddy, from the very beginning. When I was pregnant she would be cozy on one side, but when Cody got home and sat or laid next to me and started talking Avalynn would woosh over in my abdomen as fast as she could to cuddle with him. Honestly, at the time it made me a little jealous.  She loved his kisses and his whistling. When we were in the hospital last week she would coo sweetly when he whistled, but the moment he stopped she would grunt at him to start up again, he would and her cooing would ensue. We were about to take a shower, and decided to keep the door open and moved her by the doorway so she could keep hearing him whistle. It was such a pleasure making her happy.

Avalynn’s favorite Disney princess and movie was Mulan. I guess she connected with smiling through the struggle, and fighting for what’s best for yourself and your family. She also loved watching Studio C, a stand-up comedy show. She loved lights, and was always drawn to look at them, which is probably what made tv so much fun.

She didn’t always look around though. Avalynn was born not breathing, so a series of tests ensued, which is how we learned of her conditions. She was immediately transferred to the NICU at children’s memorial Hermann, and she and I spent our first and only 2.5 days apart. It was torture for both of us. The day I was released from the hospital after an emergency c-section, I had Cody take me home to change, and then straight to Avalynn. The nurse there told me that Avalynn hadn’t opened her eyes by herself once. That they checked to make sure her eyes could actually open, and they turned off the lights to see if it was a light sensitivity keeping her eyes closed. But as soon as Cody and I were there and held her tiny hand, and started talking to her she opened her eyes, and looked in our direction. The nurse said, “It’s like she waited till she had a reason to open her eyes, she needed someone worth looking at. She needed her mom and dad.”

Avalynn was very curious about the world around her, and she was a girly girl. Some of her favorite awake time was when she was playing with her cousins. Alina and Addie especially loved to hold her, feed her, change her diaper, try jewelry on and read to her. Addie even started doing that before Avalynn was born. She would come up to me on the couch, say, “I want to hold Avalynn”, and put her arm on my very pregnant belly and cuddled in… then she’d say, “now Avalynn wants to watch Mickey Mouse Club House.”. Addie would try to read to Avalynn but usually just interpreted what the pictures in the book meant. It lead to some great story time. She also brought her doll clothes, bows, and shoes up and would lay them on my abdomen and switch outfits to play dress up with her baby cousin.

Avalynn loved playing with the balls on her mama roo and had started hitting them to make them swing, and she and I would swat them back and forth. She liked rattles, the light up music cube mima and papa got her, and her all-time favorite were beads. It was the only time I ever heard my daughter whine, complain, or object unrelated to food. Her Occupational therapist Holly was introducing the beads after a few minutes of tracking and grabbing them she was getting tired, so we were going to give her a rest. When we took the beads from her hands Avalynn very loudly, said “UH”. She was not happy to have them taken away, even if she was tired. We let her keep them and then she took a nice long nap with her beads.

Avalynn earned some nick names during her short life time. Her first two were Superwoman and Rexy, because she liked to sleep with one arm up like superman, or her two hands in fists on her chest like a t-rex. She was lovingly called Avalynn Waddelin, babbling,  bumpkin, princess, beautiful, gorgeous, angel, my precious, baby girl, little fighter and my baby cousin by her family. Her most recent nickname though came from our last week with her when I called her my little zombie baby. She had lost most of her color, had dark sunken eyes, and was skinny from losing 3.5 lbs in 4 days. It was hard for all of us to witness, but we comforted and loved her. And we helped each other heal by talking about the truths of Christ’s gospel. That death was not the end, thanks to the resurrection, that families are forever, and that she would have a perfect little body soon. Then we coped with humor, like we usually tried to do, and taught her about life after death in relation to the undead and supernatural. We even watched an episode of iZombie with her. I remember a nurse walked in and was surprised to find us watching a zombie show with our dying baby.

The following day was when we went outside, it was a sunny warm day with a little breeze. I had been inside with Avalynn for most of her life. So when we were talking about going outside we made jokes about how I was a vampire because the sun hurt, now that I was never outside, and how Cody was Batman because he went to a normal job to come home and be a hero to his girls. So somehow we ended up with our little family consisting of Batman married to a Vampire with a zombie baby. We decided that should be made into a movie.

Since it won’t be made into a movie though, and Avalynn would have wanted to say goodbye, she helped me write a poem, a letter, about her little life…

Dear Mom & Dad,

I didn’t want to leave you, I didn’t want to go.

I fought so hard to stay here, I wanted you to know.

Surviving wasn’t enough for us, you wanted me to live.

You took me to the zoo and sea, and gave all you had to give.

My doctors were baffled, they really thought outside the box,

They gave us tools to care for me, I loved them lots and lots.

My nurses were really brave, because I was so small.

They took care of my parents too, and gave it all their all.

My therapists were wonderful, they helped me play and eat.

They even made me Velcro gloves, and purple boots for feet.

My cousins were amazing, they loved to laugh out loud.

They made me curious about the world, they made me really proud.

My aunts and uncles were really fun, they liked to make me smile,

 They tickled me from head to toe and dressed me up in style.

My grandparents reassured me, they said it’d be alright.

They promised to care for mom and dad if I went into the light.

My Father in Heaven loves me, He sent me here to you,

I’m now back in His caring arms, and I know God’s plan is true.

I’ll see you when I’m older, don’t forget to look for me.

I’m watching over you from heaven, we'll be happy wait and see.

Love,

Avalynn

You all made an impact on my daughter’s life, because she managed to capture you with her eyes, her joy, her love… On the day of her passing I reflected on that and wrote another poem I wanted to share.

Her eyes saw into eternity

They connected with the soul

They left an imprint on every heart

No matter warm or cold

Her lips spoke purity

They filled the room with joy

They never spoke any ill words

Except one time with a toy

Her hands worked miracles

They comforted, encouraged, and prayed

They changed the life of whom they touched

Everywhere they laid

Her feet stood brave and tall

They inspired all,

Because they were works of art

Although now we lay her,

We lay her down to rest

She lives on and We live on

So let’s give life our best.

Avalynn and I lived the best we could. We prepared and planned so we knew we would both be alright with the separation that was coming. We even planned that as she passed away we would listen to In Your Arms. The message of that song soothed our souls. I held her knowing she belonged in my arms, but more than that, we belonged in God’s loving embrace. We knew that eventually we would need to embrace the silence, let our fears go, and relinquish every ounce of perceived control to God. That is exactly what happened as she died in my arms.

I wanted to conclude my thoughts by playing our song. In Your Arms, by Meredith Andrews.

We love you baby girl, we’ll live the way you did, purely, trusting, joyful, long suffering, and enduring well… we’ll see you soon.

Obituary

In Memory of

Avalynn Marie Walde

February 25, 2015 - June 13, 2015

Obituary

Avalynn Marie Walde, 3 months 19 days, died at 0018 hours on Saturday, 13 June 2015 at Memorial Hermann Hospice Inpatient Unit, Houston, Texas of natural causes.

Avalynn was the firstborn child of Jennifer Ann (Johnson) and Cody Walde. She was born on Wednesday, 25 February 2015 at 0909 hours at Memorial Hermann Hospital Southeast in Houston, Texas.

Avalynn is a child of record with The Church of Jesus Christ of Latter-Day Saints. As an infant, she enjoyed her mobile, especially her monkey friend. Her favorite genre of music was Jazz, Island, Christian rock and Classical. Other favorite activities included playing with her colorful beads, giraffes and butterflies, watching Studio C, floating in the pool and lounging in the hot tub, playing with the family dog, Jackson, and family time at the beach, the Houston Zoo and at home.

She is survived by –
Her parents: Jennifer Ann (Johnson) and Cody C. Walde of Webster, TX
Her Aunts and Uncles: James and Jennifer (Knight) Johnson, Jeffery and Rachel (Reed) Johnson, Jeanne Johnson, Joel Johnson and Jason Johnson, all of Pasadena, TX; Lucas and Amber (Meyer) Walde, King George, VA, Emily (Walde) and Ike Buckley, Logan, UT, Leif Walde, Fredericksburg, VA.
Her first cousins: Alina, James and Addie Johnson; Caiden and Ayla Walde; Ariana and Raquel Buckley
Her Grandparents: Maryann (Watson) and Louis J. Johnson, Pasadena, TX; Christina J. (Forsythe) and C. Lyle Walde, Rhodesville, VA
Her Great-Grandparents: Maryalice (Sbarbaro) Watson, Julia A. (McGrew) Birch, Billie (Zwieble) Forsythe

She is preceded in death by her Great- Grandparents: Joseph L. Watson Sr (1992), Terrell S. Birch (2015), Wm. David Johnson (2009), James C. Forsythe (2000), Shirley (Rice) Walde (2007) and Clayton A. Walde (2008)

Special Thanks are extended to the following for the love and care of Avalynn:
Children's Memorial Hermann Hospital
UT Physicians
Epic
NICU Nurses: Mary Bouguetta, Kenneth Tyler, Pamela Medford, Adrienne Hamilton, Ivan Berling
Traveling Hospice Nurses: CeCe Gonzales, Joe Hancock, Sasha Graham, Stephanie Bennett
Hospice Chaplain: Darla Broden
Inpatient Hospice Nurses: Patricia Dixon, Yalonda McKinney, Monica Martinez, Amelia Wonlue, Glendy Nataren, Eliana Caballero, Debra Boisbert
Doctors: Patrick Jones, Ana Leech, Fatima Boricha
Memorial Hermann OT/PT Therapists: Zachary Kelsey, Magda Jungman, Marianna Kendrick
Epic Therapists: Stephanie Perillo, Holly Garelick Bauerlein
STTAR Center: Hope Trevino

In lieu of flowers, the family has requested donations to assist in funeral and medical costs. Donations can be made directly to a member of the immediate family or online at avalynnsangels.blogspot.com

Originally Posted at http://obits.dignitymemorial.com/dignity-memorial/obituary.aspx?n=Avalynn-Walde&lc=4608&pid=175115918&mid=6483287&locale=en_US  pictures and memorial slideshow are available to view here.

I needed to say thank you. All the gofundme money has gone to her funeral expenses. It didn't cover it all. We have till tomorrow. & another part will be paid over 5 years amounting to 7600. Not sure how we will fit monthly payments in, but we will. We have nothing for her headstone, they're helping us design to get a price. It was a very difficult time. We chose her plot. I was grateful for the guidance because in some ways it felt like playing hot & cold. Avalynn was telling me which plot she wanted. It was a 7 hr meeting with an hr lunch break.. that's a long time to work on burying your 3 month old.

12:18am this morning our lives changed forever as our beautiful angel daughter Avalynn Marie Walde passed away after fighting for her life for 107 days. Cody & I need a few days of privacy as we process her passing. She is no longer suffering, but we will desperately miss our baby girl. She is waiting for us on the other side. We long for the day we will be reunited. We take comfort in our faith & in each other. We grieve with hope.

If you can help fund the funeral expenses and help us to make our bills during bereavement, we would appreciate it. Prayers & hugs & hearing your favorite thing about Avalynn would also help comfort us.

We took her outside into the sun today, just for ten minutes, I carried her while my husband pushed the wheelchair & the nurse carried the oxygen tank. We laid in the grass by some flowers as a family & held each other. It was rejuvenating to step outside hospital walls & into nature.

Avalynn is a little fighter. She is very obviously within days or hours of us losing her. But she's hanging on, even though we have said goodbye, given her love, reassurance, guidance, comfort, laughed with her, danced with her, sung to her, taken pictures with her, told her we will be cared for, told her we are proud of her & promised relief. It's torture to hear the cries through all the morphine & anti anxiety meds. It's torture to watch her waste away. I asked the doctor why she is fighting so hard to hang on when she is hurting so bad & can't rebound from this. His answer was touching & perfect... He said, " if I was a part of your family, I wouldn't want to leave it either..."

The Walde family received their photos back from Now I Lay Me Down To Sleep. Jennifer has posted a few on the fundraising page.

Her previous update says that the SubQ pain medicine is much more effective. She also stated that they are keeping details private, this is a sad, sacred, intimate time for this family.

Let us respect their privacy and allow them to grieve and heal. Please pray for them. Please fast, please add them to prayer lists and rolls. Please share this link and donate if you can.

❤

Early last night Avalynn's bowel sounds have stopped. No food or medication can be absorbed. We are looking at other delivery methods for the medications, especially morphine, but will most likely do a subcutaneous line. There is a very small chance medication can restart the bowel. Most likely though, we are saying good bye to our angel in the next few days or week. She is hurting & anxious & in respiratory distress. She couldn't sleep because of it over night, but has finally fallen asleep out of exhaustion this morning. I hope She sleeps until we get her pain meds, as it's the most relief available at the moment. We will not be leaving the hospital, as she can't receive the medication subcutaneously, without being here. We have prayed and given her a blessing of healing and comfort. Our hearts are breaking. This is, however, a sacred & private time. May angels surround us & May God hold us in the hallow of his hand.

Please pray! Avalynns bowels has stopped working, she can no longer absorb food or medicine. She will not be released from the hospital and the family feels they may lose her in the next few days. Let's join together and pray for their comfort and healing and for sweet Angel Avalynn. May God do what He knows is best. ❤

I called Dr Campbell's office at CHOP in PA. He has performed the VEPTR surgery on a 4 month old. I'm waiting to see if the San Antonio doctors have. Of course it will be at least two weeks before we know if she is a candidate for the evaluation even, so I'm getting ahead of myself, but this is good to know.

Today I got to fill out the first step towards Avalynns exam to see if she's a candidate for the veptr surgery. It was 10 pages long. But I slept the best sleep for 3 hrs after... It's hope... next I will get a phone call to see if she is candidate for the two day in person exam in San Antonio...I'm nervous, but excited & grateful the drs here finally helped me do what I couldn't do for myself in getting the information.

Well Avalynn crashed around 3pm & is just now stabilizing a little. She's a fighter. Even during it with the doctor, nurse & I working with her in major distress, she'd occasionally find it in herself to smile a little. My 3 month old wants to comfort us. About fifteen minutes later she was crying out in pain & was given the biggest morphine dose she's ever had. Even that didn't calm her down completely. Other meds administered, with poor response, but she finally settled on my chest for a little while. While it breaks my heart to see her suffer, I'm glad the doctors got a first hand glimpse into what I've been telling them.

Avalynn's decline is obvious & has been picking up speed the last two weeks. The doctor only projects it to get much worse. We were made aware of our options tonight, & given the recommendation to stop her feeds since she is starving, even with them, and they are causing greater distress & suffering now, & to increase her narcotics & let her pass peacefully. Cody & I are praying & counseling what to do when. It's coming to the decision of some nutrition or breathing, as she won't be able to do both very soon.

We are hoping for information from the veptr surgery doctors soon. While she is no where near old enough, we need to try...it's her only real chance. The doctor here is helping with that.

Good moments the last week