Lullaby and Goodnight...

(This post is dedicated to Anna Wilson, my grandma. She died March 2nd, leaving a large hole in our family.)

Elise had a great-grandmother with whom she shared many things. The most obvious was their birthday. September 8. One born in 1919, and the other in 2004. As I watched my grandma progress through the last 10 years of her life, I was continually intrigued to see the many similarities emerge between these two females who have held permanent places in my heart.

In her last few years, great-grandma and great-granddaughter...

Both used wheelchairs to get around, and both needed to be pushed. Grandma never did get used to wheeling herself around.

Both found it hard to communicate. Grandma had her better days, but even on the bad ones, she could definitely get her point across, right up until her death.

Both spent lots of time in a bed. Although Grandma enjoyed getting up in her wheelchair for BINGO and eating in the dining room, she eventually became bed ridden, unable to summon the energy to get up. Over the last few years, the bed has increasingly become where Elise is most comfortable, as opposed to her chair, a beanbag, or a mat on the floor.

Both were stuck in bodies that didn’t work well. Neither could walk, and

they both brought out the creativity in their caretakers for good and comfortable positioning (pillows, blankets, padding, adjustable hospital beds…).

Most importantly -- Both depended on the love and care of others to make it through each day.

I know that Grandma prayed for each of my children, but she always spent extra time on Elise. As she lay in a body that was failing her more each day, she would think of Elise and inquire about her well being. Sometimes Grandma would get confused and offer to watch Elise for me while I went to an appointment or ran errands. In her aging mind, she was still able to care for her great-granddaughter, even though in reality, she was stuck in a bed in the nursing home. I would always thank her graciously and try to steer the conversation in another direction. My grandma adored Elise, and I know that Elise will love her just the same as soon as they meet again in heaven.

Watching my grandma die forced me into thoughts of Elise’s future. It is certain that she will not enjoy a long life. The probability of her living past childhood is small, although not unheard of. I have been told by several of Elise’s doctors to expect her to live around 7-10 years. That’s typical for a kid like Elise. With good medical care and a supportive family, her life span can definitely be stretched out. With the types of seizures Elise has, and with her extent of brain injury and all that comes with it, we just can’t deny the fact that we will most likely outlive our daughter.

In the first years of Elise’s life, I thought about this subject constantly. It was hard to get those cryptic words spoken by her doctors out of my mind. I became obsessed with pinning each doctor down. No matter what their specialty, I wanted their opinion. For some reason, the unknown really bothered me.

“I know you can’t see the future, but tell me -- how long do you think Elise will live?”

Some doctors gave me straight answers, others pled the 5th. One would predict a longer life span, another saw it as shorter. After several years of this maddening guessing game, I decided that it just didn’t matter. It’s a precarious spot to be in--knowing that she could die today or live many more years. We are fully aware that any morning of the week, we can walk in to Elise having passed away in her sleep. Seizures are curious things. They can steal a life silently, like a thief in the night, or wildly, like a roaring lion. Elise is also at high risk for developing pneumonia, which is deadly for kids with her issues. The flip side of all of this morbid talk, however, is the fact that she could also surprise us, and live for many years past what is anticipated, even into her teenage years.

I am well aware that I cannot choose the way that Elise will go. I don’t know when, where, or how it will happen. My husband and I can say that we are as prepared as we can be, but what does that really mean? Obviously, no parent on earth is emotionally equipped to see their child go before them. Unlike my grandma, Elise won’t leave behind a life full of the typical memories and life experiences. She won’t be surrounded by her children and grandchildren. This is a sadness that only I will bear. She knows no difference. She will pass on into eternity in the exact same way as everyone else who dies.

Whether the life is old and gray, or young and innocent, death comes for us just the same. Our methods of passing on vary widely. A prolonged process, or a tragic jolt out of nowhere--lying in bed waiting, or taken by surprise. The one thing that all deaths have in common is that whoever you are, wherever you live, and whatever you believe, you will be held accountable by God. You will take your last breath here on earth, and start new again. Where you start new is entirely up to you, but start you will. Hearing my grandma take her last breath after spending several days staring at her chest rising and falling at an increasingly slower rate, I found myself picturing that very meeting. Not between the Lord and myself, but between the Lord and my daughter.

I’ve written about the subject of eternity for children like Elise here before, but that first meeting between her and God is what I picture most. Hopefully, alongside the Lord, Elise will also be greeted by those who knew and loved her here on earth.

That last visit I had with my grandma wasn’t about catching her up on what my kids are up to. I wasn’t there to ask if she went to BINGO that day, or share with her our typical treat of Sprite and chocolate. I was there to say goodbye. More importantly, I was there to hold her hand and paint memories from our past together, mainly from when I was a child. I talked to her about my recollections of her rocking me. I remember the squeak of the old rocking chair as she would sing lullabies until I succumbed to sleep. I decided that afternoon, that the best way for me to comfort my grandma in her last lucid moments on earth was to give her lullabies back to her. I sang “Hush Little Baby”, “Amazing Grace”, and “You Are My Sunshine”. Although she couldn’t respond vocally, she showed her understanding by nodding and squeezing my hand.

Most every time Ty and I visited my grandma in the nursing home over the last few years, we enjoyed singing lullabies to her. It started several years earlier, when Ty was just an infant. To break the silence that would sometimes fill the air during our visits, I started singing to Ty. It ended up being enjoyable for Grandma as well. She would sometimes sing with us in a small voice, clapping along when feeling energized. Other times, she would lay with her eyes closed, still listening, but too tired to join in.

Chances are, Elise will reunite with my grandma many years before I will. As I held her hand for one of the last times, I asked my Grandma Wilson to do me an important favor. I asked her to be there for Elise when she is introduced into heaven, whenever that may be. Could she watch over her until I got there? I wanted her to feel an importance in Elise’s life well beyond gazing at her from behind the bed rails, and touching hands from wheelchair to wheelchair. I wanted her to feel secure in the knowledge that her job wasn’t over with this little girl once her life ended.

Whether the end of an old life, or the passing of the young, death forces us to look back at life. For me, as Elise’s mom, her life means way more than just being cared for day by day, and dealing with the challenges that come along. That is why I find great importance in being eternally minded.

1 Peter 1:13 says...

“Therefore, with minds that are alert and fully sober, set your hope on the grace to be brought to you when Jesus Christ is revealed at his coming.”

I don’t put my hope in having another girl...

I don’t put my hope in Elise’s progress or cure….

I don’t put my hope in an easy, comfortable life here on earth...

I put my hope in the knowledge that Elise will meet her maker face to face, just

as my grandma did only days ago.

In order for Elise’s life here on earth to be useful to the Glory of God, I look to

1 Thessalonians 5:16-18:

“Rejoice always, pray continually, give thanks in all circumstances; for this is

God’s will for you in Christ Jesus.”

Too often, we put way more importance on the goodbye to life than we do on the hello to eternity with our one true God. My grandma, Anna Wilson, had her turn to say hello, and I am sure that she is waiting patiently for when it is her great-granddaughter’s time to join her in a place where they will both be made whole once again.

1938

1945

1942

Having my hair dried by Grandma as a little girl.

Showing off my new bike with Grandma Wilson.

My wedding

Easter Sunday with Grandma

Great-Grandma (Mimaw) and Lane

Lane made himself at home walking the halls of the nursing home in just a diaper!

Great-Grandma (Mimaw) and Elise

Dueling wheelchairs!

Both Lane and Ty called the nursing home “Mimaw’s house”. In this pic, Grandma feeds Elise as Lane takes a nap in her bed.

Sharing a birthday party!

Grandma loves Elise

Great-Grandma (Mimaw) and Ty

When Ty was little, I would take him to Grandma’s to share breakfast from McDonald’s. She really enjoyed that.

I’m so glad that I have this picture of me holding my grandma’s hand. She held my hand as a child for comfort and to keep me safe. I wonder who will hold my hand when I’m 92?

Night and Day

Romans 8:28:

“And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them."

I can’t think of anything more opposite than night and day. One is quiet, the other full of life. The moon watches over our sleep, and the sun welcomes us awake. The night creates dreams, leaving reality for the light of day. Our first night with Elise proved to be the complete opposite to the next day’s discoveries.

Immediately after Elise’s birth, the mood of the delivery room was uplifted at the sight of a healthy, breathing, pink little baby girl. The doctors and nurses that were there to help with the predicted chaos quickly dispersed and left us with just the ones needed to assist with the normal delivery aftercare. Many babies with CMV are born with an enlarged liver or spleen, a rash on their body, underweight, or even deceased. Elise’s entry into this world was glorious for us all. She looked great, breathed great, sounded great, and surprised everyone! Even the doctor came over as they were preparing her for my arms, and told me, “Maybe your mom was right all along. She very well may have been healed.” (We fervently prayed for Elise’s healing during my pregnancy. My mom always told the doctor that she would be healed.) To hear those words from the doctor that gave us such a grim prognosis during my pregnancy was shocking and hopeful. As a matter of fact, someone took a picture of my mom that night, kneeling down on her knees in prayer, thanking God for what seemed at the time to be a true miracle. Unlike most CMV babies, Elise avoided the NICU, and went with me in my arms as they wheeled me to my room. She didn’t need any special care at that time. We were free to spend our first night as mother and daughter, side by side in my hospital room.

As Chris settled into the uncomfortable pull-out bed that barely fit his tall frame, I readied myself for some one-on-one time with Miss Elise. The one thing I remember, as vividly as if it were yesterday, is how I sang to her. I pulled out all of the sweet songs that I lulled her big brother, Lane, with not so long ago. “Amazing Grace”, “Jesus Loves Me”, and “Hush Little Baby” were just a few. In spite of very little sleep while sharing the night with my hungry, crying, wriggling newborn, I was in heaven.

The rising of the sun on that next day would mean a new world for me and my family. The world we had initially prepared ourselves for, but took a pause from for a few short hours. A nurse took Elise for a newborn hearing screening, and kept her for what seemed an inordinate amount of time. I remember asking Chris to go check on things several times. He would leave and return with the reassurance that they were still testing. No big deal. My room was filled with family and friends, and we had enjoyed an afternoon of laughter and doting over baby Elise.

What happened next was a quick and agonizing moment. A nurse came in to share results of Elise’s test. Her words cut through the room like a knife, and left my heart bleeding openly for all to see. Chris quickly cleared the room and came to my side, crying aloud with me. From that moment on, life was altered. Elise was not perfect. In fact, she was completely deaf.

(Of course, at this point, we had no idea of the shocking revelations to come including her blindness, CP, epilepsy, and severe cognitive delay.)

It was if I had lost her twice. Once with the original realization of her brain injury during pregnancy, then as she was ripped from me again when told of her reality that day. What started as a fantasy turned into an ugly reality. I had been full of joy, but now felt depleted. The night had been bright and the day was now dark.

It’s kind of odd. Typically, night is when things feel worse. It’s more mysterious and threatening. The beginning of a new day is when things feel better -- brighter and more inviting. My experience was definitely reversed. Our night was filled with peace and serenity. The day brought chaos and felt like a nightmare. This experience was, in a very literal sense, a version of night and day. By night, she was healed - perfect. By day, her problems came to light to forever change our lives.

We allowed ourselves one really bad, terrible, awful day. I cried until my eyes were almost swollen shut. We grieved hard that day. However, we were never angry or irritated at God. I never wasted any time questioning why she wasn’t healed, or how this could happen to us. Was I disappointed that God, in fact, did not heal Elise? Very. Did I want to run from the hospital screaming in terror? Yes I did. But God had been working on me from the beginning. My prayers had not only focused on her healing, but they also called out for an acceptance for what was to come. I wanted to be sure that I was prepared to face what awaited us. Ever since I can remember, it has always been of great importance to me that I know my faith and love for Jesus wouldn’t diminish in times of need. With this first realization that Elise was deaf, and with many more soon to come, this was definitely my time of need.

So, God didn’t heal her. What next?

Well, we may have lost our composure, but we didn’t lose our faith. We just shifted our focus. We would now concentrate on praying for strength, our marriage, patience, and perseverance. This would definitely not ruin our lives or our trust in Jesus Christ.

I had already found God as a child years before, but only now was I able to realize that I had not yet fully relied on Him. As it is written in my all-time favorite hymn, “Amazing Grace”:

Amazing Grace, how sweet the sound,

That saved a wretch like me.

I once was lost but now am found,

Was blind, but now I see.

The doctors may have opened my eyes to Elise’s true situation, but I needed God to open my eyes as well. Only until I could see who Elise truly was, could I then also see my immense need for Christ. I was going to need to fully rely on Him, lean on Him, and trust in what He had in store for me and my family.

I looked to this 4th verse of “Amazing Grace” that is less known:

The Lord has promised good to me.
His word my hope secures.
He will my shield and portion be,
As long as life endures.

How could I respond in a way that this bad situation could be used to accomplish the will of God in our life? I had to decide that this massive disappointment may be a major drag, but I wouldn’t let it drag me or my family down. Yes, we remain disappointed. I look it straight in the eye every single day. But, I do not let it rule my feelings, my actions, my words, or my love of life. I want to magnify and glorify the Lord through my attitude.

I learned an enormous and very useful lesson that day. Disappointment doesn’t have to define you after a crummy experience or new heartbreaking reality. If you stop to think about it, so much of life is night and day, resulting in unavoidable disappointment. One part of your life may be in stark contrast to what it once was, or what you expected it to be. Relationships, financial standings, health, career, even your walk with God. Choosing to forego feelings of unfairness, anger, and depression isn’t easy, but it is necessary for the preservation of the kind of life Jesus has for you. For me, it was the giving away of myself for Him and what I knew He expected that carried me through.

The sunrise of each new day from then on proved glaring, shining a bright light on Elise’s true afflictions. In the ensuing weeks and months, we would come to know of a multitude of additional struggles and disabilities Elise faced. But with each day, the disappointment faded, leaving room for acceptance, joy, and a renewed faith in what Jesus can do even in the face of overwhelming sadness.

Yes, it was a night of ignorance, but it was also a night of pure bliss! I sure am grateful for those few hours that I was given to spend with my daughter under the shroud of night. Even though she didn’t hear my songs, I did. She didn’t see my blurry image in her newborn eyes, though I definitely saw her. I guess that night was mainly for me. The night that I delighted in Elise for what I thought she was. A night that I will always treasure in my heart, tucked away just far enough to be thought about and pulled out to the surface whenever I want to remember what it was like to have a healthy, perfect little baby daughter who defied all odds and proved the doctors wrong. The truth of it doesn’t even matter now. Somehow, in my mind, that night did happen--if only in my dreams.

Thank you, Lord, for giving me the gift of that unforgettable first night with my baby daughter, Elise.

(If you want to learn more about Elise, feel free to browse my older posts by scrolling down, or by looking at my blog archive on the left of the page.)

Keeping a positive attitude leading up to Elise’s birth. I knew that she could be born with any number of problems, or even die. I was still excited to meet her and finally hold her in my arms.

My family was so excited and relieved to see that Elise was born looking very healthy and normal. It was obvious that she had microcephaly (small head due to less brain growth), but she looked great otherwise!

My mom (GiGi) kneeling down on her knees after Elise’s birth, thanking God for her life.

Elise and me on our first night together...

Children’s Hospital in downtown Dallas quickly became our home away from home once Elise’s issues came to light.

An interesting picture of Elise in a crib surrounded by doctors at Children’s. Not the image I had in mind for her our first night. I have become accustomed to the many questions, tests, procedures, and plain medical curiosity that have become such a large part of Elise’s life.