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My Story of Hope- Amanda Miller (Madelyn)

April 10th, 2013 was one of the best days of my life. Madelyn Mary
entered my world. My heart, my soul would never be the same again.
Bright blue eyes, strawberry blonde hair, rosy cheeks, she was
perfect in every way.

My pregnancy with Madelyn had been uneventful. Just like some
newborns, Madelyn was jaundice at birth, but overall, she seemed like
a healthy little girl. After the standard couple of days in the
hospital, we went home. Madelyn was dressed in her pink elephant
pajamas, the sun shining. It was truly a beautiful day.

During Madelyn’s, initial pediatric checkup, I mentioned to her
pediatrician that although Madelyn’s skin color was now a perfect
rosy pink, indicating that Madelyn’s jaundice was resolving, I had
noticed the slightest yellow tint in the corners of the whites of her
eyes. I remembered her pediatrician stating that in addition to the
standard jaundice blood drawl and other newborn screening tests, she would add one more to assess Madelyn’s liver function. Being a new
mother and being naive, I did not think that there was anything
wrong with Madelyn. She seemed healthy and her pediatrician also felt
the yellow tint in Madelyn’s eyes was most likely related to newborn
jaundice.

At 8:00 am, the morning following Madelyn’s pediatrician visit, I
received a phone call, it was Madelyn’s pediatrician. Stoically and
calmly I remember her stating, “Amanda, the labs we drew reveled that something is wrong with Madelyn’s liver. You need to get her to Texas
Children’s Hospital now. The liver team is waiting for you.” I do not
remember much else after that call, but I remember frantically calling
loved ones and throwing clothes into a bag. I remember it was storming
and raining and the streets were flooding as we frantically drove to
the medical center. It was as if everything was falling apart. I
remember looking at my sweet girl in her car seat. She was so tiny,
dressed in her ballerina jumpsuit. She was so calm, so brave.

After a week of brutal diagnostic testing, Madelyn was diagnosed
with Biliary Atresia. Biliary Atresia (BA) is, ” a serious liver disorder
that occurs before or shortly after birth when a baby’s bile ducts
(the tubes that carry bile from the liver) become blocked. The body
needs bile to aid digestion and carry wastes from the liver out of the
body. When blocked ducts prevent bile from being excreted, the liver
becomes damaged, resulting in liver failure.” Biliary Atresia is
extremely rare, not genetic, and is silent in that it is not detected
during pregnancy.

I will always remember the face of her liver doctor, walking into our
room, tears in her eyes, as she told us that in order for Madelyn to
live, she would need a liver transplant. However, at the time, Madelyn
was too little for a transplant. In order to “buy time” for Madelyn to
grow and become strong enough for a liver transplant, she would need a
specialized surgery called the Kasai, in order to attempt to
temporarily decrease the stress and damage being placed on Madelyn’s liver. Surgery was scheduled for the following day.

On Madelyn’s one month birthday, my tiny warrior was carried into the
operating room to undergo one of the many medical procedures aimed at
saving her life. After a grueling morning and afternoon in the
surgical waiting room, we were able to see our tiny warrior, she had made it through the surgery with flying colors.

Following Madelyn’s initial diagnosis of Biliary Atresia, the
complications associated with her disease frequently reeled its ugly
head. We found ourselves frequently at Texas Children’s Hospital.
Madelyn’s liver disease was progressing quickly and so her liver team
worked frantically to provide the tools that Madelyn needed to help
her grow for transplant. At one point, Madelyn was connected to a feeding tube 24 hours a day, 7 days a week. This tiny child who
had a feeding tube in her nose, a PICC line in her heart, never
stopped smiling. She never stopped seeing the world with so much joy
and enthusiasm. She rarely fussed, she rarely cried. She was named, “Miss Happy” on the” liver floor “of TCH, because she was always truly
happy, truly joyful, no matter the circumstance. For 8 months, Madelyn battled liver failure and all of the horrible complications that are associated with the disease. So on December 15th, 2013, when we received “the call” that there was a liver for Madelyn, I felt as though it was Christmas Day. Finally, my baby, would feel good, finally she would be free of all the tubes, the machines, the pain. She would be able to finally live! 

We rushed to the hospital with high spirits, with high hopes! It was truly a gift. 
In the early hours of December 16th, I held my sweet baby in the surgical waiting room, waiting as her surgical nurses finalized last minute details for her transplant. She sat in my lap, playing with a granola bar wrapper in her hand. She twirled it around in the air, placed it in my face. Smiled. When it was time for her to go to the OR, her nurses carefully scooped her from my arms, reassured me they would watch over my baby girl. I kissed her, told her I loved her. She waved “bye-bye”.  I felt relief, relief that finally Madelyn would have a chance at life, finally no longer have to suffer, and finally be able to live the life she so deserved.

Madelyn’s surgery went beautifully. There were no complications. However, as the hours and days after transplant progressed, it became apparent that something was wrong with Madelyn’s new liver. Surgeons summarized that Madelyn’s body was rejecting the new liver and she was quickly going into rejection and needed to be “re-listed”. There were several opportunities for new livers which the doctors explored, and unfortunately those offers were not the right match for Madelyn. At one point they allowed myself to be assessed to be Madelyn’s live donor, which at the time live donors were not a great option due to high complications. I was unfortunately not a match. 

She was quickly  deteriorating and one by one each of her organ systems were also failing as well. It was around this time, that doctors made the decision to pull Madelyn from the transplant list, as she had developed sepsis and would not be able to survive a transplant. Devasted does not even describe my emotional state that day. I felt as though my heart had been ripped from my chest.

On December 25th, Christmas morning, Madelyn “coded.” Doctors performed extraordinary measures on her that day, determined that she would not pass on Christmas Day. On December 26th, after days of “yelling” at God, I remember I was washed over with an overwhelming peace. This perfect peace. It was as though I knew that the miracle I wanted, the miracle that Madelyn would survive and wake up and be on this earth with me was not the miracle intended for Madelyn. The miracle that I had been desperately seeking was for Madelyn to be ultimately healed. Healed in Heaven. Truly healed. At this point, Madelyn was in full organ failure and had suffered significant brain damage. IF she survived, her quality of life would have been poor. We made the difficult decision that day to let her go, to set her free.

December 26th, 2013 was the worst day of my life. Nurses carefully placed my sweet baby, in my arms. I gazed at her sweet face as tubes and lines were carefully removed from her battered body. I stroked her strawberry blonde hair which had started to develop curls. I begged God to show me He was truly there, to send me some sign. You see Madelyn had experienced significant brain damage and most likely had suffered some paralysis, which was evident as she lost movement in her face. However, as she took her last breath, my Madelyn gave us the most beautiful, peaceful smile and then she flew into Jesus’s arms. I can only imagine it was at that moment He scooped her up and he took her to Heaven.

Madelyn was one of the bravest people I have ever met. My co-workers had even stated that Katy Perry’s song “Roar” was written about Madelyn, because she was such a fighter. She endured more pain than any child, than any person should ever endure. Yet, this child smiled through it all. She was happy. She truly illuminated joy to all those she met. Though her life was incredibly short and her world incredibly small, Madelyn and I made so many memories. Whether it was going on a walk on beautiful sunny day, watching the tropical fish in many of TCH’s fish tanks, to singing and dancing around a room, our world was full of so many happy memories, which I am so thankful for.

It will be 6 years, this December since I was able to hold my baby girl. Losing a child is a journey. It truly is. As I have walked this path, I have met incredible nurses, doctors, friends, mamas who have supported and loved on Madelyn while she was here on this Earth and then loved on me after she went to Heaven. I continue to grieve her deeply, but I have found beauty along the way. I am still so thankful to her liver donor. Although Madelyn’s transplant did not go as planned, I am still so thankful she was given the chance of transplant. Sadly, many children die waiting for organs.

In 2014, I had the chance encounter of seeing one of Madelyn’s liver doctors. He just happened to be in the area for his child’s soccer game. We hugged and he told me he had wanted to reach out to me to let me know that the hospital Madelyn had been born at was implementing screening for biliary atresia to every newborn baby born at their hospital. To test for BA, it is  just one extra blood test. I was so touched to know Madelyn had impacted this hospital in such a way, that her story could help other children as well. In 2015 and in 2017, Isaac and then Oliver, Madelyn’s two little brothers entered my world. I see parts of her in them. Isaac has her blue eyes and her sensitive heart, Oliver shares her joyful spirit. Though they are still young, they are learning about their big sister in Heaven, who watches over them and loves on them every day.

I still at times question God and my heart hurts a little bit more when I see a beautiful dress in the girls’ clothing section and wish I could snatch it up and dress Madelyn or when I see a little girl – as I yearn for my sweet daughter and for the color pink in my life as well. However, I cling to Jeremiah 29:11 “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.” This journey has not been easy, nor at times made sense or seemed fair, but I feel it has shaped me as the person and the mother I am today.

Madelyn taught me to never give up, to find joy in the small things, to find beauty in this world, to reach out to others in need. I miss her deeply but I am determined to live out her legacy. To make her proud. She is my hero.

Till the day we meet again, I love you forever and always Madelyn.

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Our Story of Hope- Robinson Family (Kylie Noel)

In May of 2014, our family of five celebrated our little girl, Kylie Noel’s, 4-month milestone with a healthy doctor check up, her first photo shoot, and a family getaway to Dallas to visit her uncle at college. Kylie was a wonderful sleeper, sleeping through the night at around two-weeks-old. She would nap just about anywhere. I even have a picture of her napping, wrapped up in her favorite blanket in the front of a store basket while shopping for our church women’s retreat. She was the first of our three babies to love sleeping on our chests – such a snuggle bug. The most laid back & outgoing baby girl full of hearty giggles. Kylie loved being held by anyone that wanted one-on-one time as she gave them her full captivation. She adored and was equally adored by her 5-year-old big sister, Peyton, and 6-year-old big brother, Jonah. Peyton and Jonah being so close in age, we hadn’t yet gotten to see them in such a care-taking, gentle, and adoring way like they were with Kylie. They just melted around their baby sister. 

This is the only family picture we have with Kylie; it was a random picture we took in a coffee shop late one night during a trip. Such a treasured picture!

On May 3, we spent the day like most Saturdays, cleaning up the house and running errands. We were also preparing to celebrate my husband, Dennis’, birthday with a party in our home the next day. Little did we know that normal, mundane, routine day was filled with all of our beautiful little Kylie girl’s “last everything.” We had a marital squabble first thing. Such a waste of precious time. Kylie kept smiling and coo-ing at us and we quickly got over it and resumed our day’s plans. 

That evening, we had our nephew over for a sleepover and popped some pizzas in the oven. I had decided to run a few last minute errands during Kylie’s last nap. As I prepared to head out, I got a bottle ready for her daddy to feed her and lay her down. She kept coo-ing & smiling at me, as though to tell me to stop and spend a few minutes with her. So, I put my purse down and stayed to feed her before running my errands. That’s the moment I play over and over again in my head. So thankful I stopped and fed her that last bottle as we cuddled and looked into each other’s eyes that last time. I can still remember the fullness of her body in my arms. At times, I can still feel the weight of her body against my chest and the warmth of her head in the crook of my neck as I burped her one last time. I kissed her chubby cheeks, handed her to her daddy and left for the store. 

That was it. Those were my last precious moments with my baby girl. The next moment I would look upon her would be the most traumatic moment of my life. 

Around 9pm, I returned home and was enjoying a chat with my husband. I got a bottle ready while Dennis went to wake her. Our entire lives and perspectives changed those next few moments. Kylie wasn’t breathing. Dennis yelled for me to call 911. He began CPR and continued until the first responders arrived and let him know he could stop. She was gone. She had passed away shortly after falling asleep. The rest of that night was a blur. Our front yard was covered with officers, emergency personnel, fire trucks, ambulances, crime scene investigators, and a constant coming and going of neighbors, friends and family; everyone in shock and no one being able to help our little girl or change our reality. We weren’t allowed back into our home until it had been thoroughly investigated. So, we sat outside in the midst of our sudden grief. But in that deep, dark-pit moment, we caught a glimpse of peace and hope – God, our Faithful Father, showed up. The full moon shone on the Easter cross still in our front flowerbed and illuminated the words written on it, “He is Risen!” We felt God comforting us in a way only He can. Because His Son, Jesus, defeated death and is alive and well, our daughter was alive and well and in His presence! We WOULD see her and hold her again! This was NOT the end!

“Soon the world will no longer see me, but you will see me. Since I live, you also will live.”Jn 14:19

“Yes, we are fully confident, and we would rather be away from these earthly bodies, for then we will be at home with the Lord.” 2 Cor 5:8 

The following weeks consisted of the most unnatural moments and events any parent should never have to live through: not being able to pick up or move our own child until she and our home were cleared by the investigators, meeting at the funeral home to pick out a tiny casket, planning her memorial and burial, finding every picture we could of her, and choosing the last precious outfit from her closet she would wear here on earth. The coroner’s report arrived and we were told that they found no fault or reason to explain why she had passed and determined it to be SIDS. Through the shock and fog of that night, the Lord spoke clearly to our hearts that this tragedy would not be meaningless. (2 Cor 4:17) Her life has great purpose! Satan would not win in her life story! We vowed to share her story and the hope and peace our heavenly Father gave us; a hope and peace that TRULY surpasses all understanding, one moment at a time. 

By the grace of God, we welcomed our precious rainbow baby girl into our family about one year later. Piper Noel (named after her big sister in heaven) has been a miraculous gift of grace that has brought so much healing to each one of us in so many ways. 

Our family with Piper; our rainbow baby.

Our grief still comes in waves and many times unexpectedly but, those waves aren’t as rough or as often as they used to be. Although there are more days of joy than pain now, our hearts and arms will always ache for our little Kylie Noel and for our family to be complete again. So, with God’s strength, we choose daily to find joy in our HOPE through Jesus, to remember that this will not be forever and that we will be complete again one fine day in Glory! 

Each day, we are One Day Closer to Glory!

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The Calm in the Storm

One thing I’ve learned first hand, and observed over the past few years in connecting with other parents who have lost a child is this:

A content heart amidst a storm is a powerful thing!

Often times we live in the ‘if only’ scenarios:

If only I could stay at home with my kids…

If only we made more money…

If only I could get pregnant…

If only my baby would sleep through the night…

If only my kids were all in school…

If only I could send my kids to a different school…

If only I could live somewhere else…

If only my child would not have died…

If only… then I’ll be content. 

We’ve all been there, we’ve all had those thoughts. But what I’ve come to realize is that God calls us to be content (a state of peaceful satisfaction) amidst the storms.

While it may not be easy, one thing is certain, if you can find contentment in your current storm, you can break fear of the future; as Proverbs 31:25 says, “she can laugh at the days to come…”

Sometimes God allows storms as a way to show His power. He allows storms to show His glory and his peace. He allows storms because He wants to show us there is a better way to live. He even allows storms to protect us.

Are you in a season of waiting, a season of grief, in the middle of a storm?

I’d encourage you to pray for one thing… Lord teach my heart to be content.

One of the quickest ways to a content heart is setting healthy boundaries and guarding our hearts.

A content heart is a guarded heart.

Proverbs 4:23 “Above all else, guard your heart, for everything you do flows from it.”

We are told to guard our hearts, because everything we do and say is an overflow of what is in our hearts. Take some time and ask yourself these questions…

  1. Who do I need to guard my heart from (friends, family, neighbors)?
  2. What things do I need to guard my heart from (Facebook, Instagram, other social media, T.V. shows, magazines, etc.)? How do those things make me feel about myself?
  3. Who and What do I need to surround myself with? Who and what will speak life? Encourage my heart? Believe in me? Inspire me? Challenge me? Bring out the best in me?

The key to a content heart is a guarded heart. The key to a guarded heart is who and what you allow into your life.

Now this may seem harsh (or even insensitive) to those who are not encouraging or supporting you, but let the Lord deal with them. Often times in deep grief, the energy that we may have had to filter out the negativity is gone, that energy is required to survive the day to day. So what may have possibly seemed ‘selfish’ in the past is actually now ‘self care’. Those who love you and want what is best for you will realize this and maybe even learn to establish boundaries for themselves.

Don’t be pulled in different directions or worried about a thing. Be saturated in prayer throughout the day, offering your faith-filled requests before God with overflowing gratitude. Tell him every detail of your life, then God’s wonderful peace that transcends human understanding, will make the answers known to you through Jesus Christ.

So keep your thoughts continually fixed on all that is authentic and real, honorable and admirable, beautiful and respectful, pure and holy, merciful and kind. And fasten your thoughts of every glorious work of God, praising him always. Follow the example of all that we have imparted to you and the God of peace will be with you in all things.

Philippians 4:4-9

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Talking About Death & Dying with Kids

I had really never talked about death/dying with our 3 and 5 year old much before their sister passed away. An occasional reference to Heaven, was really all that had come up in conversation. For young kids, it seemed like a topic that ‘we’ll get to when they’re older’. However, it doesn’t always work out that way. For many families, death comes knocking on when you least expect it, and that can be a scary thing to think about.

Two weeks before Zoe passed away, our boys had been talking about Heaven in Sunday School. I remember driving home from church with Zoe in the car with us, as our boys proceeded to tell us all about Heaven. They described learning about how there were rooms that God was preparing for us in a big big house. That when our rooms were ready we got to go to His big big house. How we all had ‘jobs’ to do here on earth, and when our jobs here were finished then we got to go see Jesus.

Ten days later, they would encounter Heaven in a very personal way.

As our boys sat in our living room, alongside two of our pastors, we had to remind them of what they had just learned about Heaven, and how it now directly related to our family.

‘Remember how you learned about how God is preparing rooms for us in Heaven, well today Zoe’s room was ready. She got to go see Jesus today. Her ‘job’ here was done.’

Their eyes got teary, all of our hearts sank, and our new reality began…

However, for our family, Heaven took on a whole new meaning in our hearts. Unfortunately, before losing Zoe, we were all very comfortable with our lives here, together; maybe even a little too comfortable. This Earth was clearly our home. Now having our sister/daughter in Heaven made us all yearn for Heaven in a whole new way. We had countless conversations about what Heaven would be like, would Zoe stay little, could she see us, could she fly, did she have dinosaurs (remember we had two little boys) as pets, did she still have to wear a diaper, and many more.

On Zoe’s first birthday, we began a fun tradition of talking about what we imagined her birthday to be like in Heaven. Now clearly we don’t know if they celebrate birthdays in Heaven, but for our little boys it connected them with their sister in such a special way. They would talk about what colors she’d pick, what theme she would like, what type of cake she would want, who would go to her party, what foods she would eat, etc. Then we would make a similar cake/cupcakes and send up ‘birthday cards/notes’ to her on balloons.

We began to realize that when we focused on the Hope of Heaven as a family, the sting of death became less breath-taking.

Fast forward four years later, and our boys are still talking about Heaven with the same vigor and passion they did when Zoe first left. After a conversation I had recently, I was reminded that not everyone talks about Heaven and dying with their kids as openly as we do. I do not fault them for that, as I realize there can be a lot of fear that can accompany such discussion. However, as we approach the subject of death and dying with the Hope of Heaven fear can be erased!

Heaven is an integral part of what Christians believe. It’s our future! As Christ-followers, it’s to be our permanent home! Randy Alcorn in his book Heaven for Kids, discusses the topic of moving to a new city. When we are going to move, what is the first thing we do? We research. We go online and look for what our new city will be like. We read to find out where we might want to live, etc. We spend time learning about our new home; and our excitement builds and builds. While we may be sad to leave our old home, friends, town, etc, the Hope of our New Home is so great that the fears begin to dissipate. Satan wants Heaven to be scary and seem down right boring, but as we read what scripture promises us about our New Home, we begin to become excited and want to invite everyone we know to move there with us! It’s going to be the greatest place to live!

So how do we help our kids when death knocks on our family’s door whether it be a sibling, a parent, a grandparent, or a friend? We give them the GIFT OF HOPE… Hope of Heaven. We teach them about what awaits them when their ‘room is ready’ and their ‘job here on earth is complete’.

Click HERE to find a list of books to keep the conversation of Heaven going in your home! 

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Trusting His Timing

I wrote this Sunday, August 8, 2014, a little less than 4 months after we lost Zoe. I believe the sermon that day was titled Trust His Timing. I was going to post it to our family blog, but never did. As I reflect back on it, I feel even more confident now about how I felt then.

This Sunday, while going through the gospel of Luke, our pastor was teaching from chapter 8. The passage was a familiar one, the healing of Jairus’s daughter.

(Photo Credit)

 

After reading the passage be began with an illustration about a pastor who was in Turkey for a conference. He received a call about his teenage daughter being in a terrible accident and was left on life support. After changing his flight, he was left in the airport for 5 hours awaiting his flight home. While reading his Bible, he came across the story of Jairus’s daughter, but from the Gospel of Mark (chapter 5). Upon reaching verse 23, he struggled to make it through the verse.

He pleaded earnestly with him, “My little daughter is dying. Please come and put your hands on her so that she will be healed and live.”

He could empathize with the earnestness with which Jairus pleaded. For him, there was comfort in knowing that he could relate to Jairus’s desperate heart.

Our pastor left the illustration without sharing with us whether or not his daughter lived; I was left the impression that she did survive.

The story of this pastor visiting Turkey and Jairus’s story immediately affected Mackenzie and I in perhaps a different way than other people in the congregation.

We too have felt the desperation that Jairus felt. Similar to our story, his daughter died as well. However, for us, Zoe was not raised to life. The healing Zoe received was different than what we would have asked for. I can see Jesus picking Zoe up in his arms during that nap, and gently whispering, “My precious child, wake up.”

For both Jairus and for our family, healing occurred; however it looked very different. Both required  faith and trust in Jesus’s. One ended with the results as prayed for, ours did not. I can’t tell you why God chose us to receive the gift of Zoe’s life and death, but I can tell you that He is using it for his glory as we trust His timing.

God has not asked me to understand why He has chosen to show His power and glory through Zoe’s death. I can, however choose to either receive it or reject it.

We have chosen to receive it. We hurt. The pain is real, but we now know what it means to have God come and enter into our pain with us. He is there in those days when we feel like we don’t know how to do anything without losing it. He is there when we have fun and laugh with the boys. He is there when we are supported by family, friends, and strangers. He is there when we feel like we have not rely on each other. He is there.

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We trust in God’s timing, not because we understand it, but because He is there with us. Looking back at those words and the journey we have been on since Zoe’s death, I see that God has used her death to grow our trust in him, to show us love and support of people who were there for us in our grief and continue to be, and to draw others closer to Him. He has also shown us how He is using Zoe’s death to walk with other through their grief and loss. I still can’t tell you why God chose us for this terrible gift, but I can tell you what He is doing through it.

Trust His timing and keep moving forward. He will, in time, show you what He is doing. It’s not easy, but it’s worth it!