Thursday, February 23, 2012

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.

Sunday, February 12, 2012

Sometimes Left, But Never Forgotten...

Days like Easter Sunday always came with an extra bit of anxiety in the first several years of Elise’s life. I would get the kids dressed up in their best church clothes and arm them with Easter baskets, ready to be filled with eggs. Lane would take off into the backyard with his sights set on last year’s best hiding places. Elise would sit in her wheelchair, basket hanging off of the handle, with me struggling to push her through the grass while plucking up eggs to add to her collection. All the while, I would struggle with my video and digital cameras to capture memories of my two kids enjoying their annual Easter egg hunt in the same way my brother and I did as children.

Did Elise enjoy the experience of bumping along over tree roots and rocks in her wheelchair? Probably not. Did she know what was going on? Definitely not. But I knew -- and for me, in those first few years, it was extremely important for Elise to be involved in all activities that a regular little girl would enjoy with her family. This routine has been repeated several times over the years. Not only for Easter, but for decorating the Christmas tree, coming along on far-away family vacations, and parking her wheelchair right up to the dinner table for our nightly meal. Yes, this all probably sounds reasonable to most. Why shouldn’t she enjoy the parts of life that all other kids get to experience? Well, what most people don’t realize, is that including Elise in all that we do as a family can be downright stressful, and at times, nearly impossible.

Having Elise at the dinner table every night was distracting to us all. She’s tired around that time, and either Chris or I would take turns on who would pacify her cries so we could talk as a family. Including her in Christmas tree decorating usually meant waiting for her to be cooperative, happy, and willing to sit for numerous pictures of me holding her hand up to the tree as if she was helping. The thought was sweet, but the process was sometimes unnecessary.

I now understand that I can show her my love by just leaving her alone sometimes. There is never a question as to how much interaction and attention Elise gets on a daily basis. Between school, therapists, and her family, she is thoroughly well she should be. My feelings of guilt are slowly but surely melting away, as I realize that my quality of affection and care for her are not measured by how many times I include her in things that she doesn’t even benefit from.

Earlier in Elise’s life, taking her along with us wherever we went was easy. She was just like any other baby. Even as a 3-4-year-old, transferring her from the car to her chair, changing her diaper while out, and feeding her on the go were still pretty convenient. Now, however, it is a drastically different story. She is bigger, heavier, and harder to handle. The back of our van has become a make-shift changing table, and I definitely get a full work out when I’m alone and have to transfer her in and out of the car.

There have definitely been times when we have thought twice about bringing Elise along. Several years ago, we took a weekend trip up to Robbers Cave in Oklahoma with our church Sunday school class. We could have left Elise with my parents and other close caregivers. However, I was determined to have a “family” camping trip. One of the highlights of the weekend was climbing a huge group of rock formations to the top, allowing us to view the entire park from above. Wheelchairs just don’t climb rocks, though. So, Chris was left at the bottom with Elise, waving goodbye, as the rest of us hiked on up. It turns out, Elise wasn’t comfortable sitting by the fire, or being transferred from the car to her chair, to a bed, to the car, and so on. Camping trips just aren’t the place for anything high-maintenance. We have gone back to Robbers Cave a number of times since then, and decided it was best to leave Elise home with family. All around, I believe we were all more comfortable that way.

Don’t get me wrong! I still try my best to include Elise in many of our daily activities and traditions. She goes with us on family walks, attends many of Lane’s school functions, goes Trick-or-Treating with her brothers, swims in my mom’s pool, and goes on shorter distance vacations with us. We take her to restaurants, Lane’s sports games, and even the movies (We get to score the sweet seats in the handicap section)! She may not understand that we are all there with her, but we know that she is there with us. It has always been important to me that the boys have memories with Elise in them. Not just around the house, but in public--having fun, going to the pumpkin patch, sitting in Santa’s lap, and eating lunch at McDonald’s.

The whole family packed up to go rollerskating a few weeks ago. There was talk of leaving Elise at home with her daddy, so we wouldn’t have to worry about her just sitting on the side of the rink hitting herself out of boredom. In my true “let’s take her -- it will be fine” fashion, I packed her up in the car anyway, and we set off for the skating rink. Much to our surprise, the lady checking us in told us that Elise could go on the rink in her wheelchair! We took her out on the skating floor and pushed her around. It was a great experience. All 3 of my kids were doing the same thing at the same time! (Ty skated for a minute, but soon gave up). Elise loved the wind on her face, and the motion of zooming around doing laps in her wheelchair. It was so much fun that we went back to skate a couple of weeks later.

That is an example of a good time for Elise to come along and be involved.

Yes, many family pictures are taken without her. At Ty’s birthday this year, she was sleeping in her bed when we took pictures and video. A while ago, I would have felt guilty that she wasn’t in them with us. I just had to get a hold on reality, and realize that just because Elise isn’t part of everything we do, doesn’t mean she is any less a member of our family.

Nowadays, it’s all about balance. Can Elise get something out of this event, and is there some element that she can enjoy about joining in? Will she be happier in her bed, in someone’s lap -- or in the middle of the action? Is including her going to put unneeded stress on me or my husband, when she could just as well be comfortable in her bed? I have surrendered my role as “Special Needs Supermom”, and instead put on the cape of “Let’s Make This a Little Easier On Everyone Mom”.

I now make it a point to stop and evaluate each situation for what it is. Am I including Elise for her sake or for mine? As the years pass, answering this question authentically has become easier and easier. It is no longer as important to me that I put up the facade of “everything is normal”, because it isn’t. The sooner I swallow that hard fact, the sooner everyone can enjoy themselves -- including Elise.

The final Easter that Elise went egg hunting. Notice that they both have a basket full of eggs. I was thoroughly worn out, and she didn’t exactly enjoy herself. I convinced myself it was OK if Elise sat next Easter out!

You can see this Easter Lane is the only one with a basket. I promise, she didn’t even realize it. She was just happy to relax in her wheelchair and enjoy being outside with the wind blowing!

Elise lined up with the other kids one Easter for a picture. Still no basket. I pushed her around and helped her brother find his eggs.

If you look close, you can see that I have an ornament in her hand to put on the tree. We don’t do these pics anymore. I let it go...

She still can pose with her brothers next to milk and cookies put out for Santa!

Don’t even ask me how I got her to keep that horn in her mouth long enough for a picture. Lane and his sister getting ready for New Years!

Daddy and Elise swimming. Elise LOVES the water, and now has a much larger life jacket. It keeps her head out of the water and supports her weight, making it easier for us to put her in the pool.

She joins us at the dinner table every once in a while. This was a Sunday dinner at my mom’s house. (I was sick that day, which explains why I am in a nightgown!)

We took Elise along with us to a drive-in movie with the boys. I was worried about how she would do in her carseat for so long, but she ended up doing great!

We always take Elise with us to Paige, Tx near Houston for our family reunion each year. Here she is being loved on by several cousins.

This is when we took the kids to the Circus when it came in town. Elise definitely felt the vibrations of all of the activity, music, and noise!

Chris and Elise at the bottom of the rocks and caves at Robbers Cave. He got to climb it the next year!

One summer, we took Elise to Six Flags with my mom and step-dad. She did very well, but obviously didn’t go on any rides. Luckily, she didn’t know what she was missing out on.

A trip to the Houston Space Center.

It seems like Houston is about as far as we will go with her these days!

It was important to me to take Elise up on stage with us when baby Ty was dedicated at our church. I try my best to include her in moments like these.

Elise has been going to Lane’s soccer, baseball, and basketball practices and games since she was 1-year-old. When she acts up it doesn’t matter. Everyone is yelling and running around anyway!

Elise at Lane’s graduation with the rest of the family. She didn’t make a peep, which is always a miracle!!!


I’m no fool! When it comes to getting candy, I will take Elise up to houses with Lane and Ty every year, whether she can eat it or not!

Me skating with Elise. She really enjoyed it, so we will be doing this again very soon.

Even GiGi got in on it! Actually, she used Elise’s chair as a sort of “walker” for skating. She is 60 after all...

Ty tried to skate for a bit, but had to quit. The skates just took over his little legs and feet.

He didn't even try the next time we went. He found an iPhone!

We had a blast, and best of all, it looks like Elise enjoyed herself, too!