Life With Liz

liz and big girls

When our youngest daughter was born she had serious health issues and we were told by one specialist that she probably wouldn’t live to her 5th birthday. Since today is her 8th birthday I’m going to repost  the story of Life With Liz.

Elizabeth Nichole Ross was born Friday 18 Jan 2008 in Guymon. At birth she was perfect. She scored an 8/9 on her apgar test, took a bottle and just generally did everything a normal baby should do. 24 hours after her birth she became somewhat lethargic—the medical term is hypotonic—but not so much that we thought anything was really wrong.

At about 30 hours she began to have problems keeping her temperature and she quit taking her bottle. At about 40 hours she began to have seizure like activity. Then on Monday 21 Jan 08 Elizabeth was transported to the NICU at NWTH in Amarillo Texas. On 29 Jan 08 she was transported by ambulance to the NICU at the OU Medical Center in OKC. She stayed there until Thursday 20 Mar 08.

Our trip to the NICU caught us totally off guard. The pregnancy was normal, Kelly was healthy and the baby always seemed fine. Not only that but we had spent considerable time praying for the pregnancy to go well and for the baby to be healthy. Katelyn and Sarah had prayed specifically that everything would go well and that our family would not be separated. Despite all of these things, 3 days after Elizabeth was born we found ourselves in a room in Amarillo talking to a doctor and a nurse about the tests they were going to run in order to find out what was wrong with Elizabeth.

Thoughts like, wills she live, will I have to preach my daughters funeral, why is this happening, but we prayed against this specific thing, ran through our minds. Nothing about this situation made any sense at all.  It certainly wasn’t in any of the plans we had made. This was certainly the hardest time we’ve ever gone through in our lives. It was a time that tested our faith in God. Kelly and I were asked to speak about our experience with Liz at the Oklahoma Women Active for Christ meeting in October 2010. The theme was “Shine” and we were asked to talk about shining the light of Christ in difficult times. Since today is Lizbeth’s 4th birthday I thought I would share this testimony here.

“that you may become blameless and harmless, children of God without fault in the midst of a crooked and perverse generation, among whom you shine as lights in the world, holding fast the word of life, so that I may rejoice in the day of Christ that I have not run in vain or labored in vain. Philippians 2:15-16 (NKJV)

The first question in The Westminster Shorter Catechism is “What is the chief end of man?” The answer to the question is, “Man’s chief end is to glorify God and enjoy Him forever.” I know very little else The Westminster Shorter Catechism says but I love that question and answer. I love it because I think it’s right and because it expresses the desires of my heart. My constant prayer is for every area of my life to bring glory to God. I also want to enjoy God and not simply have a life filled with cold, formal religious activities. I would say this is probably true for all those that have been redeemed by the grace of God.

Through our experience with Liz we learned that it’s harder to focus on living for the glory of God in hard times than it is during the easy times. We also learned it’s harder to enjoy God forever during the hard times than it is the easy times. We also learned that enjoying God and trusting God during the hard times gives us more of an opportunity to demonstrate the greatness of God and thus bring Him great glory than we will have at any other time in our life.

Throughout this journey, we learned a great number of things but there are three specific things we would like to pass on to you today. Before we start, we want to say that these aren’t “Three Easy Steps To Shine the Light of Christ in Difficult Times”.  There aren’t any steps for times like this and if there were, they wouldn’t be easy. These are just some things we learned along the way.

1. You need Jesus.  [Kelly Speaking]

As most of you know, we had prayed for Lizzie throughout my entire pregnancy.  I fully expected a healthy, happy baby.  When things began to look bad, I still thought everything would be okay.  However, as things began to get worse, I began to doubt.  I doubted the effectiveness of my prayers.  I doubted the healing ability of God.  I doubted the presence of Jesus in my life.

When we finally arrived in Amarillo; exhausted and emotionally drained, I knelt down beside my bed in the Ronald McDonald House and prayed honestly.  I told the Lord about all my doubts and all my fears.

I finally asked these questions: “Am I going to continue to believe in You?  Am I going to go on believing You are real and involved in my life?  Do I want to go on trusting in You?”  After what seemed like only a moment, I answered myself, “Where would I go?  Who would take me through this?  I will follow You.”  Later I realized these were similar to Peter’s words to Christ – to whom would we go?

An immediate peace came over me in that instant.  I was still afraid for my baby’s life, but not afraid I had been forsaken.  After this moment of crisis in my faith, I prayed two very specific prayers.  I prayed for us to sleep well that night, and I also prayed for Lizzie to be comforted the next day, as only God can comfort an infant undergoing MRI’s and other testing.  I told no one, not even Stacy what I prayed.  I wanted God to answer my prayer to reassure me in my weakest moment.

We did sleep well that night.  Prayer number one was answered.  The next day we were not allowed to see Lizzie until after her testing, so it was a day of waiting and praying and making phone calls.  Finally, we were able to see her.

As the nurse was filling us in on the tests and how Lizzie responded, she said to Stacy, “I got your baby to take a pacifier.” (Lizzie had refused one since birth.)  When Stacy asked how she was able to do that, the nurse responded, “I dipped it in sugar water.”  We chuckled that we might take a pacifier dipped in sugar water.  Then the nurse used these very words:  “It is proven that sucking on a pacifier comforts infants during times of stress.”  God allowed her to use my word from a prayer to encourage me.  From that point on I never doubted the sovereignty of my Lord.

The days turned to weeks and the weeks to months, and still we had no diagnosis.  The doctors were doing all they could to find out what was wrong with LizBeth.

In the NICU (Neonatal Intensive Care Unit), you meet several thousand people.  Well, not really, but it sure feels that way.  Doctors, nurses, therapists, therapist assistants, lab technicians, and other patients are among those you spend your time with.  Eventually, Stacy and I were able to reach out to other families and share our faith with those in the medical profession.  I know it was only through the power of the Holy Spirit.

I will tell you a lost person can survive the NICU.  A lost person can even survive well, but a Christian is the only one who can live the life in the NICU.  There is no one on this earth, not your spouse, not your mom, not one single person that can comfort you during the grief and fear you feel when your baby almost dies right in front of you.  It is an absolutely overwhelming feeling of helplessness.  There is nothing I can do.  There’s nothing the doctors can do.

I would surrender LizBeth to Christ each night before going to bed.  (Father, I know she belongs to you, but I love her so much.  I know you love her more, but I really want her to stay with me.  Oh, Lord, I surrender LizBeth to you.  Give me the grace and the strength to accept whatever may happen. Amen)  However, every time LizBeth would stop breathing, I would pray, “I’m not ready.  I can’t do this.  I know what I said, but I can’t.  Please, oh please, don’t take her.”

This is the roller coaster I rode in the NICU for the first month.  God did not disown me.  God did not rebuke me.  God gave me the strength I needed for this journey.  You cannot have the peace or the strength of the Holy Spirit unless you have repented and believed on the Lord Jesus Christ.  Oh how sad it is to see someone going through such grief, and know they have no relationship with the Lord.

As time went on and we were allowed to decorate the area around Lizzies’ bed, a nurse approached us and said this: “You can almost feel the presence of the Lord around her bed.”  She went on to say that some nurses would come to read Lizzie’s Angel Board throughout the day.  This Angel Board was made by several ladies from our church.  It was very pretty and pink, but the most wonderful thing was all the Scriptures that covered it.   We encouraged ourselves by reading these verses aloud to Lizzie.  Many nurses in the NICU would jot down the Scriptures from this board and then take them to other patients.

We volunteered to pray with other families.  I have said all this, not because we’re perfect or because we became perfect in the NICU, but because of Jesus we were able to shine for Him.  It is truly amazing what Christ did in our lives through what was the most difficult thing we had ever been through.  He deserves all the glory.  He is truly amazing.

2. You need The Church. [Kelly speaking]

In trying to decide how to put this point together, we have decided to say “Thank you!” Thank you to all the many people in this very room who prayed for Lizzie and for us and for our entire family.  Thank you for continuing to pray.  Thank you for your support and your overwhelming generosity.  This is also the point that is the hardest to share without tears. That is why I will let Stacy take over from here.

[Stacy speaking] While still here in Guymon, awaiting the transfer to Amarillo, many of you called continuously, and those who could, came to see us.  My parents moved into our house to take care of our big girls.  Even though we hated being away from them, they were able to live in their own house, go to school, and see their friends.  This was a huge blessing.  Once we arrived in Amarillo, Neisa met us at the elevator to comfort us.

Christian brothers and sisters began to call and send e-mails.  Some came to treat us to a meal.  Others came to pray for Lizzie in person.  This continued daily.  Every day we received encouragement from The Church – the Body of Christ.

After one week, we found out we were going to be transferred to OKC.  We had no idea what to do in the City.  The RMH was full.  We had no place to stay.  We assumed we would probably get a motel close by to spend our nights.  At the RMH in Amarillo we found access to internet and sent an e-mail letting everyone know what was going on and asking them to pray about a place for us to stay. After sending the e-mail we went to see Liz one last time before the transfer on Tuesday morning.

Thirty minutes later when our visit was over we were driving through the Taco Bell drive-thru when Dr. Tim Eaton, the president of Hillsdale FWB College, called, asked about Liz and then offered us the use of the missionary apartment on the Hillsdale Campus.  We could go get the key the next day, and have it for as long as we needed it.  I’m not sure if we can express the enormous burden that was lifted after that phone call.

Countless numbers of people came to see us; pray with us; pray for Lizzie.  They gave us money and gift cards to help with expenses.  Our Christian school had “Hat Day,” to raise money for LizBeth’s medical expenses.  They also had several fundraisers just for us.  Because of the generosity of individuals, other churches, and the fundraiser our expenses were fully covered.

I’m not talking about just the medical expenses.  I am talking about all expenses:  eating, gas, anything recommended for Liz like socks – (Lizzie needed socks and the socks they had in the NICU were not big enough for her freakishly large feet.)  We were so blessed by the giving from The Church that we were able to help another family that did not have the awesome support team we did.

The church even allowed me to stay with Liz and Kelly for the entire time, two full months… with pay!  I never once came back to preach in that two months and if I mentioned it to the deacons they would tell me not to even think about because they could handle it.  On more than one occasion, I’ve been told by pastors and former pastors that my church’s response to our time of need is rare.  They encouraged me to recognize what a great church family we have.

There were also different men who volunteered to come back and preach for me so I didn’t have to leave. The first weekend we were in Amarillo I had planned to come back and preach. Daniel Sweet from Woodward called to see about Liz. During the conversation I told Daniel I was going to go back that weekend to preach and Daniel replied, “Tell you what, why don’t you let me go preach for you this weekend and you stay and take care of your wife and baby.” The next weekend Alan Boles came back to Guymon to fill in for me and a few weeks later Tim Eaton did.  It is so humbling to receive such gifts.

[Kelly speaking] Paul says in Philippians, “I thank my God upon every remembrance of you.” While preparing for this presentation, we were reminded once again at how God used His people to care for us.  Because of the many who prayed and fasted, because of the many who gave, because of the many who took care of our needs, we were able to be lights for Christ.  Stacy is going to speak more on this in a moment, but at first, we were focusing on Lizzie – on what was wrong, on what was right, on what needed to be done.  But soon, we were focusing on what God was doing.  He is sovereign.  He is involved in every part of this.  We began to see His hand at work in our lives and our baby’s.  God’s people were spurring us on in our relationship with Jesus.

[Stacy speaking] 3. You must live your theology.

When someone goes through hard times we seek to comfort and encourage them with reassuring words about God.

Ø God hears your prayers.

Ø God cares/loves you.

Ø God is in control.

Ø God has a reason for this.

When we say these things, we really do mean for them to be comforting and reassuring. When we say these things, we really do believe that they are true. During our time with Liz, we learned that these are easy words to say when you are not the one going through the hard time. These are easy things to believe when all is well. These are easy things to take comfort in when everything in our world is working as it should.

One thing we all know from life is that at some point we will be the person going through the hard time. A loved one will die. We will lose our job. The test results will come back bad. Sudden tragedy will strike our lives. During these times will we be able to say these words of comfort and encouragement to ourselves? Will we be able to believe these things about our situation? Do these words that are spoken so easily when all is well in our lives still bring comfort in our lives when all is not well? For the next few minutes I want to talk about our experience with these things during our time with Liz.

God hears your prayers.

When we found out Kelly was pregnant we prayed for her and the baby during our nightly prayers. At this time Neisa was living in the Amarillo RMH while Emily was in the NICU at NWTH. Our girls were very afraid this would happen with Liz so they prayed very specifically about it. Every day they prayed that the baby would be healthy and wouldn’t have to go to the hospital because they didn’t want to be separated from their mommy and daddy.

When Liz was born everything seemed great. She scored high on her APGAR test, kicked, screamed and just generally acted like a new baby should. 24 hours later she lost her appetite. It wasn’t enough to really worry us but it was something that was noticeable. Around 36 hours later Kelly called me from the hospital crying because the nurses said our baby was having seizures. Then about 48 hours after she is born she was no longer able to maintain her own body temperature. Less than 72 hours after Liz was born she was in the Neonatal Intensive Care Unit (NICU) at Northwest Texas Hospital and we were living in the Amarillo Ronald McDonald House.

Through all of this Kelly and I were praying, our girls were praying, our families were praying, our church was praying, the FTG FWB church was praying and the LCC here in Guymon was praying. Despite all the people who were praying for Liz to get better she didn’t. Despite all our girls’ prayers for our family not to be separated we were.

When the exact opposite of what you pray happens does God still hear your prayers? Is this still comforting to you?

God loves/cares for you. God is in control.

It is amazingly easy to know that God loves you and is in control of your situation when you can see His help in your situation. When Liz started having problems I came to the church to pray and send an e-mail. After praying I went into my office and I discovered that someone had slipped this note card under my door with these words on it, Jeremiah 29:11. “For I know the thoughts that I think toward you, says the LORD, thoughts of peace and not of evil, to give you a future and a hope.”

After Liz was transferred to the NICU she was put in a room and over her bed was a picture of a mother rocking her baby. Under the picture was this Scripture. “For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end.” Jeremiah 29:11 (KJV) Others may say this was all a coincidence but Kelly and I knew that our God was in control and He was letting us know that He loved us and cared about our situation.

We’ve already talked about Dr. Eaton calling us to let us know that there was a room waiting on us at Hillsdale. What we didn’t tell you was that at the time Dr. Eaton was in Washington DC and he wasn’t on the list of people I had e-mailed and asked to pray. In less than an hour someone else had forwarded that to Dr. Eaton and he had taken it upon himself to ensure we had a place to stay when we arrived. This was further proof for us that our God was in control and He was letting us know that He loved us and cared about our situation.

A few days after we arrived in OKC I was reading my Bible before we headed out to see Liz. That day I happened to be reading in the Gospel of Mark. The particular place I was reading was where Jairus was seeking Jesus to heal his dying daughter. In the story as Jairus is talking to Jesus men come to tell him that his daughter is dead. In the translation I was reading at the time it said, “Jesus ignored their reports and said, ‘Don’t be afraid. Just trust me.’”

That day as we went to see Liz the neurologist met with us and told us that Liz had a debilitating disease and that over the next 3-5 years we would watch her slowly die. We would watch as her muscles stopped working and she would either suffocate because she didn’t have the strength to breathe or her heart would just stop working but either way she would die within a few years.

She told us this like you would tell someone, “We were out of hamburger meat and so it will be a few minutes before your order is ready.” She then turned and walked out the door as we stood open-mouthed trying to process this information. After a minute or so I remembered my daily Bible reading and I turned to Kelly and said, “Jesus ignored their reports and said, ‘Don’t be afraid. Just trust me.’” For the next two months we lived by that verse. That verse gave us the strength to get out of bed and talk to the Dr’s. as they told us time and time again how our baby was going to die.

Some would say that my reading that verse before we had ever received a diagnosis was a coincidence but Kelly and I knew that our God was in control and He was letting us know that He loved us and cared about our situation.

There is such comfort and encouragement during the times when we see God’s love and control in our situation. Is it still comforting and encouraging when these things are less obvious?

For the first few weeks of our time in the NICU Liz got progressively worse. She didn’t make any improvements at all and the hospital staff at times tried to prepare us for going home without a baby. In the few times she made progress and our hopes got up something terrible would happen and she would have a setback that took her further back than she was before the improvements.

One morning we came in and there was an oxygen mask in Liz’s bed and when we asked the nurse about it we were told that her blood oxygen levels and heart rate had dropped so much that they had been forced to “bag” her three times in the night and the day nurse had been forced to do it once before we arrived. Then as we watched Liz stopped breathing and her blood oxygen levels dropped to a 2. We then watched as the nurse with a look of panic on her face put a bag over our daughters face and frantically tried to push air into her lungs to get her to breathe again before she died.

One morning after Liz had been making improvements we arrived to find out Liz had been diagnosed with a disease that would require her to live her life on a ventilator and that she would have a tracheotomy the next day. To ensure that she could breathe until then they were going to intubate her. This is where they push a tube down her throat that would be connected to a machine that would breathe for her. We were asked to leave the room for this procedure.

When we were allowed back in the room Liz was red and sweaty. The nurse told us that Liz had fought them every step of the way. She was red and sweaty from trying to keep them from putting that tube down her throat. A few minutes later she was hurting from it and tried to cry. With the tube down her throat she couldn’t make any noise and so she silently cried around that tube. At this point I had to leave the room.

Does God still love you when things go bad? Does God still care when things go bad? Is God still in control when things go bad? Do these things still comfort and encourage you?

God has a reason for this.

God has a reason that my daughter nearly died? God has a reason that our family was separated for 2 months? God has a reason for the fear, hurt and stress of a situation such as this? Is God having a reason for your situation comforting when your situation is hard?

Are these sorts of statements comforting to you not just in the hard times but in the hard times when nothing is going right? I can say without any sort of hesitation or doubt that they absolutely are.  A pastor I frequently listen to has been dealing with a massive brain tumor. When it was discovered and they began running tests to find out about it he received the worst possible results every step of the way.  In the midst of all that was going on he made this statement.

I fully expect that God will heal me and I will walk my daughter down the aisle and pastor my church for 20 more years. In the end however I am in God’s hands and whether I live or die I cannot tell you how the sovereignty of God is like a warm blanket that comforts me in this time.”

I can honestly say I understand what he means, I agree with him and I find the same comfort from this that he does. I can’t say that this would have always been comforting to me. I can’t say that I would have always been able to find comfort in prayer, God’s love, control and purpose when everything was going bad because it wouldn’t be true.

During our time with Lizbeth there came a moment of surrender to the Lord that allowed me to trust Him and find comfort in Him no matter what happened. I remember kneeling at the bed in the Amarillo RHM and praying, “God I love you. I don’t understand why this is happening but I trust you. As much as I love my daughter I know that you love her more and so I surrender her to you. Oh God I want to take her home but if you choose to take her I will still love you, I will still trust you and I will still serve you.”

The faith that came through surrender allowed me to live the theology I professed to believe in the midst of the hardest time I’ve ever gone through in my life.

As we lived our theology we were able to shine the light of Christ in this difficult time. We were told by an atheistic Dr. that it was obvious that something gave us the grace to deal with what was going on and that wasn’t something everyone had. The day before we left the NICU one of the nurse practitioners told another person on the NICU staff, “The entire time mom and dad have been here they have said they were praying for a miracle and by golly I think they got one.”

When we were able to bring Liz home I preached a series of messages called Life Lessons from the NICU about things we learned. We sent them to some nurses that had especially helped us during this time and some of them kept them on their computers and gave them to other families in the NICU to help them.

We pray daily for God to completely heal Liz and expect to one day bring her to church, watch her do the penny march and hush her because she’s talking during the service. But if not, God still hears and answers our prayers. He still loves us and He still loves Liz. He is still sovereign and He is still good and so He will still work through her life and ours for our good and His glory.

[Kelly speaking] As you know “Life with Liz” is still complicated, but it is great.  Lizzie will turn three in January and start preschool in a class just for kids like her.  We ask you to continue to pray.  At this point in her life, she has totally confounded all those in the field of medicine.  Since we have no diagnosis, no one has any way of explaining away her progress.  Every noise she makes, every sippy cup she drinks from, every time she holds her head up, we are able to give glory to God.

Elizabeth Nichole Ross was born Friday 18 Jan 2008 in Guymon. At birth she was perfect. She scored an 8/9 on her apgar test, took a bottle and just generally did everything a normal baby should do. 24 hours after her birth she became somewhat lethargic—the medical term is hypotonic—but not so much that we thought anything was really wrong.

At about 30 hours she began to have problems keeping her temperature and she quit taking her bottle. At about 40 hours she began to have seizure like activity. Then on Monday 21 Jan 08 Elizabeth was transported to the NICU at NWTH in Amarillo Texas. On 29 Jan 08 she was transported by ambulance to the NICU at the OU Medical Center in OKC. She stayed there until Thursday 20 Mar 08.

Our trip to the NICU caught us totally off guard. The pregnancy was normal, Kelly was healthy and the baby always seemed fine. Not only that but we had spent considerable time praying for the pregnancy to go well and for the baby to be healthy. Katelyn and Sarah had prayed specifically that everything would go well and that our family would not be separated. Despite all of these things, 3 days after Elizabeth was born we found ourselves in a room in Amarillo talking to a doctor and a nurse about the tests they were going to run in order to find out what was wrong with Elizabeth.

Thoughts like, wills she live, will I have to preach my daughters funeral, why is this happening, but we prayed against this specific thing, ran through our minds. Nothing about this situation made any sense at all.  It certainly wasn’t in any of the plans we had made. This was certainly the hardest time we’ve ever gone through in our lives. It was a time that tested our faith in God. Kelly and I were asked to speak about our experience with Liz at the Oklahoma Women Active for Christ meeting in October 2010. The theme was “Shine” and we were asked to talk about shining the light of Christ in difficult times. Since today is Lizbeth’s 4th birthday I thought I would share this testimony here.

“that you may become blameless and harmless, children of God without fault in the midst of a crooked and perverse generation, among whom you shine as lights in the world, holding fast the word of life, so that I may rejoice in the day of Christ that I have not run in vain or labored in vain. Philippians 2:15-16 (NKJV)

The first question in The Westminster Shorter Catechism is “What is the chief end of man?” The answer to the question is, “Man’s chief end is to glorify God and enjoy Him forever.” I know very little else The Westminster Shorter Catechism says but I love that question and answer. I love it because I think it’s right and because it expresses the desires of my heart. My constant prayer is for every area of my life to bring glory to God. I also want to enjoy God and not simply have a life filled with cold, formal religious activities. I would say this is probably true for all those that have been redeemed by the grace of God.

Through our experience with Liz we learned that it’s harder to focus on living for the glory of God in hard times than it is during the easy times. We also learned it’s harder to enjoy God forever during the hard times than it is the easy times. We also learned that enjoying God and trusting God during the hard times gives us more of an opportunity to demonstrate the greatness of God and thus bring Him great glory than we will have at any other time in our life.

Throughout this journey, we learned a great number of things but there are three specific things we would like to pass on to you today. Before we start, we want to say that these aren’t “Three Easy Steps To Shine the Light of Christ in Difficult Times”.  There aren’t any steps for times like this and if there were, they wouldn’t be easy. These are just some things we learned along the way.

1. You need Jesus.  [Kelly Speaking]

As most of you know, we had prayed for Lizzie throughout my entire pregnancy.  I fully expected a healthy, happy baby.  When things began to look bad, I still thought everything would be okay.  However, as things began to get worse, I began to doubt.  I doubted the effectiveness of my prayers.  I doubted the healing ability of God.  I doubted the presence of Jesus in my life.

When we finally arrived in Amarillo; exhausted and emotionally drained, I knelt down beside my bed in the Ronald McDonald House and prayed honestly.  I told the Lord about all my doubts and all my fears.

I finally asked these questions: “Am I going to continue to believe in You?  Am I going to go on believing You are real and involved in my life?  Do I want to go on trusting in You?”  After what seemed like only a moment, I answered myself, “Where would I go?  Who would take me through this?  I will follow You.”  Later I realized these were similar to Peter’s words to Christ – to whom would we go?

An immediate peace came over me in that instant.  I was still afraid for my baby’s life, but not afraid I had been forsaken.  After this moment of crisis in my faith, I prayed two very specific prayers.  I prayed for us to sleep well that night, and I also prayed for Lizzie to be comforted the next day, as only God can comfort an infant undergoing MRI’s and other testing.  I told no one, not even Stacy what I prayed.  I wanted God to answer my prayer to reassure me in my weakest moment.

We did sleep well that night.  Prayer number one was answered.  The next day we were not allowed to see Lizzie until after her testing, so it was a day of waiting and praying and making phone calls.  Finally, we were able to see her.

As the nurse was filling us in on the tests and how Lizzie responded, she said to Stacy, “I got your baby to take a pacifier.” (Lizzie had refused one since birth.)  When Stacy asked how she was able to do that, the nurse responded, “I dipped it in sugar water.”  We chuckled that we might take a pacifier dipped in sugar water.  Then the nurse used these very words:  “It is proven that sucking on a pacifier comforts infants during times of stress.”  God allowed her to use my word from a prayer to encourage me.  From that point on I never doubted the sovereignty of my Lord.

The days turned to weeks and the weeks to months, and still we had no diagnosis.  The doctors were doing all they could to find out what was wrong with LizBeth.

In the NICU (Neonatal Intensive Care Unit), you meet several thousand people.  Well, not really, but it sure feels that way.  Doctors, nurses, therapists, therapist assistants, lab technicians, and other patients are among those you spend your time with.  Eventually, Stacy and I were able to reach out to other families and share our faith with those in the medical profession.  I know it was only through the power of the Holy Spirit.

I will tell you a lost person can survive the NICU.  A lost person can even survive well, but a Christian is the only one who can live the life in the NICU.  There is no one on this earth, not your spouse, not your mom, not one single person that can comfort you during the grief and fear you feel when your baby almost dies right in front of you.  It is an absolutely overwhelming feeling of helplessness.  There is nothing I can do.  There’s nothing the doctors can do.

I would surrender LizBeth to Christ each night before going to bed.  (Father, I know she belongs to you, but I love her so much.  I know you love her more, but I really want her to stay with me.  Oh, Lord, I surrender LizBeth to you.  Give me the grace and the strength to accept whatever may happen. Amen)  However, every time LizBeth would stop breathing, I would pray, “I’m not ready.  I can’t do this.  I know what I said, but I can’t.  Please, oh please, don’t take her.”

This is the roller coaster I rode in the NICU for the first month.  God did not disown me.  God did not rebuke me.  God gave me the strength I needed for this journey.  You cannot have the peace or the strength of the Holy Spirit unless you have repented and believed on the Lord Jesus Christ.  Oh how sad it is to see someone going through such grief, and know they have no relationship with the Lord.

As time went on and we were allowed to decorate the area around Lizzies’ bed, a nurse approached us and said this: “You can almost feel the presence of the Lord around her bed.”  She went on to say that some nurses would come to read Lizzie’s Angel Board throughout the day.  This Angel Board was made by several ladies from our church.  It was very pretty and pink, but the most wonderful thing was all the Scriptures that covered it.   We encouraged ourselves by reading these verses aloud to Lizzie.  Many nurses in the NICU would jot down the Scriptures from this board and then take them to other patients.

We volunteered to pray with other families.  I have said all this, not because we’re perfect or because we became perfect in the NICU, but because of Jesus we were able to shine for Him.  It is truly amazing what Christ did in our lives through what was the most difficult thing we had ever been through.  He deserves all the glory.  He is truly amazing.

2. You need The Church. [Kelly speaking]

In trying to decide how to put this point together, we have decided to say “Thank you!” Thank you to all the many people in this very room who prayed for Lizzie and for us and for our entire family.  Thank you for continuing to pray.  Thank you for your support and your overwhelming generosity.  This is also the point that is the hardest to share without tears. That is why I will let Stacy take over from here.

[Stacy speaking] While still here in Guymon, awaiting the transfer to Amarillo, many of you called continuously, and those who could, came to see us.  My parents moved into our house to take care of our big girls.  Even though we hated being away from them, they were able to live in their own house, go to school, and see their friends.  This was a huge blessing.  Once we arrived in Amarillo, Neisa met us at the elevator to comfort us.

Christian brothers and sisters began to call and send e-mails.  Some came to treat us to a meal.  Others came to pray for Lizzie in person.  This continued daily.  Every day we received encouragement from The Church – the Body of Christ.

After one week, we found out we were going to be transferred to OKC.  We had no idea what to do in the City.  The RMH was full.  We had no place to stay.  We assumed we would probably get a motel close by to spend our nights.  At the RMH in Amarillo we found access to internet and sent an e-mail letting everyone know what was going on and asking them to pray about a place for us to stay. After sending the e-mail we went to see Liz one last time before the transfer on Tuesday morning.

Thirty minutes later when our visit was over we were driving through the Taco Bell drive-thru when Dr. Tim Eaton, the president of Hillsdale FWB College, called, asked about Liz and then offered us the use of the missionary apartment on the Hillsdale Campus.  We could go get the key the next day, and have it for as long as we needed it.  I’m not sure if we can express the enormous burden that was lifted after that phone call.

Countless numbers of people came to see us; pray with us; pray for Lizzie.  They gave us money and gift cards to help with expenses.  Our Christian school had “Hat Day,” to raise money for LizBeth’s medical expenses.  They also had several fundraisers just for us.  Because of the generosity of individuals, other churches, and the fundraiser our expenses were fully covered.

I’m not talking about just the medical expenses.  I am talking about all expenses:  eating, gas, anything recommended for Liz like socks – (Lizzie needed socks and the socks they had in the NICU were not big enough for her freakishly large feet.)  We were so blessed by the giving from The Church that we were able to help another family that did not have the awesome support team we did.

The church even allowed me to stay with Liz and Kelly for the entire time, two full months… with pay!  I never once came back to preach in that two months and if I mentioned it to the deacons they would tell me not to even think about because they could handle it.  On more than one occasion, I’ve been told by pastors and former pastors that my church’s response to our time of need is rare.  They encouraged me to recognize what a great church family we have.

There were also different men who volunteered to come back and preach for me so I didn’t have to leave. The first weekend we were in Amarillo I had planned to come back and preach. Daniel Sweet from Woodward called to see about Liz. During the conversation I told Daniel I was going to go back that weekend to preach and Daniel replied, “Tell you what, why don’t you let me go preach for you this weekend and you stay and take care of your wife and baby.” The next weekend Alan Boles came back to Guymon to fill in for me and a few weeks later Tim Eaton did.  It is so humbling to receive such gifts.

[Kelly speaking] Paul says in Philippians, “I thank my God upon every remembrance of you.” While preparing for this presentation, we were reminded once again at how God used His people to care for us.  Because of the many who prayed and fasted, because of the many who gave, because of the many who took care of our needs, we were able to be lights for Christ.  Stacy is going to speak more on this in a moment, but at first, we were focusing on Lizzie – on what was wrong, on what was right, on what needed to be done.  But soon, we were focusing on what God was doing.  He is sovereign.  He is involved in every part of this.  We began to see His hand at work in our lives and our baby’s.  God’s people were spurring us on in our relationship with Jesus.

[Stacy speaking] 3. You must live your theology.

When someone goes through hard times we seek to comfort and encourage them with reassuring words about God.

Ø God hears your prayers.

Ø God cares/loves you.

Ø God is in control.

Ø God has a reason for this.

When we say these things, we really do mean for them to be comforting and reassuring. When we say these things, we really do believe that they are true. During our time with Liz, we learned that these are easy words to say when you are not the one going through the hard time. These are easy things to believe when all is well. These are easy things to take comfort in when everything in our world is working as it should.

One thing we all know from life is that at some point we will be the person going through the hard time. A loved one will die. We will lose our job. The test results will come back bad. Sudden tragedy will strike our lives. During these times will we be able to say these words of comfort and encouragement to ourselves? Will we be able to believe these things about our situation? Do these words that are spoken so easily when all is well in our lives still bring comfort in our lives when all is not well? For the next few minutes I want to talk about our experience with these things during our time with Liz.

God hears your prayers.

When we found out Kelly was pregnant we prayed for her and the baby during our nightly prayers. At this time Neisa was living in the Amarillo RMH while Emily was in the NICU at NWTH. Our girls were very afraid this would happen with Liz so they prayed very specifically about it. Every day they prayed that the baby would be healthy and wouldn’t have to go to the hospital because they didn’t want to be separated from their mommy and daddy.

When Liz was born everything seemed great. She scored high on her APGAR test, kicked, screamed and just generally acted like a new baby should. 24 hours later she lost her appetite. It wasn’t enough to really worry us but it was something that was noticeable. Around 36 hours later Kelly called me from the hospital crying because the nurses said our baby was having seizures. Then about 48 hours after she is born she was no longer able to maintain her own body temperature. Less than 72 hours after Liz was born she was in the Neonatal Intensive Care Unit (NICU) at Northwest Texas Hospital and we were living in the Amarillo Ronald McDonald House.

Through all of this Kelly and I were praying, our girls were praying, our families were praying, our church was praying, the FTG FWB church was praying and the LCC here in Guymon was praying. Despite all the people who were praying for Liz to get better she didn’t. Despite all our girls’ prayers for our family not to be separated we were.

When the exact opposite of what you pray happens does God still hear your prayers? Is this still comforting to you?

God loves/cares for you. God is in control.

It is amazingly easy to know that God loves you and is in control of your situation when you can see His help in your situation. When Liz started having problems I came to the church to pray and send an e-mail. After praying I went into my office and I discovered that someone had slipped this note card under my door with these words on it, Jeremiah 29:11. “For I know the thoughts that I think toward you, says the LORD, thoughts of peace and not of evil, to give you a future and a hope.”

After Liz was transferred to the NICU she was put in a room and over her bed was a picture of a mother rocking her baby. Under the picture was this Scripture. “For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end.” Jeremiah 29:11 (KJV) Others may say this was all a coincidence but Kelly and I knew that our God was in control and He was letting us know that He loved us and cared about our situation.

We’ve already talked about Dr. Eaton calling us to let us know that there was a room waiting on us at Hillsdale. What we didn’t tell you was that at the time Dr. Eaton was in Washington DC and he wasn’t on the list of people I had e-mailed and asked to pray. In less than an hour someone else had forwarded that to Dr. Eaton and he had taken it upon himself to ensure we had a place to stay when we arrived. This was further proof for us that our God was in control and He was letting us know that He loved us and cared about our situation.

A few days after we arrived in OKC I was reading my Bible before we headed out to see Liz. That day I happened to be reading in the Gospel of Mark. The particular place I was reading was where Jairus was seeking Jesus to heal his dying daughter. In the story as Jairus is talking to Jesus men come to tell him that his daughter is dead. In the translation I was reading at the time it said, “Jesus ignored their reports and said, ‘Don’t be afraid. Just trust me.’”

That day as we went to see Liz the neurologist met with us and told us that Liz had a debilitating disease and that over the next 3-5 years we would watch her slowly die. We would watch as her muscles stopped working and she would either suffocate because she didn’t have the strength to breathe or her heart would just stop working but either way she would die within a few years.

She told us this like you would tell someone, “We were out of hamburger meat and so it will be a few minutes before your order is ready.” She then turned and walked out the door as we stood open-mouthed trying to process this information. After a minute or so I remembered my daily Bible reading and I turned to Kelly and said, “Jesus ignored their reports and said, ‘Don’t be afraid. Just trust me.’” For the next two months we lived by that verse. That verse gave us the strength to get out of bed and talk to the Dr’s. as they told us time and time again how our baby was going to die.

Some would say that my reading that verse before we had ever received a diagnosis was a coincidence but Kelly and I knew that our God was in control and He was letting us know that He loved us and cared about our situation.

There is such comfort and encouragement during the times when we see God’s love and control in our situation. Is it still comforting and encouraging when these things are less obvious?

For the first few weeks of our time in the NICU Liz got progressively worse. She didn’t make any improvements at all and the hospital staff at times tried to prepare us for going home without a baby. In the few times she made progress and our hopes got up something terrible would happen and she would have a setback that took her further back than she was before the improvements.

One morning we came in and there was an oxygen mask in Liz’s bed and when we asked the nurse about it we were told that her blood oxygen levels and heart rate had dropped so much that they had been forced to “bag” her three times in the night and the day nurse had been forced to do it once before we arrived. Then as we watched Liz stopped breathing and her blood oxygen levels dropped to a 2. We then watched as the nurse with a look of panic on her face put a bag over our daughters face and frantically tried to push air into her lungs to get her to breathe again before she died.

One morning after Liz had been making improvements we arrived to find out Liz had been diagnosed with a disease that would require her to live her life on a ventilator and that she would have a tracheotomy the next day. To ensure that she could breathe until then they were going to intubate her. This is where they push a tube down her throat that would be connected to a machine that would breathe for her. We were asked to leave the room for this procedure.

When we were allowed back in the room Liz was red and sweaty. The nurse told us that Liz had fought them every step of the way. She was red and sweaty from trying to keep them from putting that tube down her throat. A few minutes later she was hurting from it and tried to cry. With the tube down her throat she couldn’t make any noise and so she silently cried around that tube. At this point I had to leave the room.

Does God still love you when things go bad? Does God still care when things go bad? Is God still in control when things go bad? Do these things still comfort and encourage you?

God has a reason for this.

God has a reason that my daughter nearly died? God has a reason that our family was separated for 2 months? God has a reason for the fear, hurt and stress of a situation such as this? Is God having a reason for your situation comforting when your situation is hard?

Are these sorts of statements comforting to you not just in the hard times but in the hard times when nothing is going right? I can say without any sort of hesitation or doubt that they absolutely are.  A pastor I frequently listen to has been dealing with a massive brain tumor. When it was discovered and they began running tests to find out about it he received the worst possible results every step of the way.  In the midst of all that was going on he made this statement.

I fully expect that God will heal me and I will walk my daughter down the aisle and pastor my church for 20 more years. In the end however I am in God’s hands and whether I live or die I cannot tell you how the sovereignty of God is like a warm blanket that comforts me in this time.”

I can honestly say I understand what he means, I agree with him and I find the same comfort from this that he does. I can’t say that this would have always been comforting to me. I can’t say that I would have always been able to find comfort in prayer, God’s love, control and purpose when everything was going bad because it wouldn’t be true.

During our time with Lizbeth there came a moment of surrender to the Lord that allowed me to trust Him and find comfort in Him no matter what happened. I remember kneeling at the bed in the Amarillo RHM and praying, “God I love you. I don’t understand why this is happening but I trust you. As much as I love my daughter I know that you love her more and so I surrender her to you. Oh God I want to take her home but if you choose to take her I will still love you, I will still trust you and I will still serve you.”

The faith that came through surrender allowed me to live the theology I professed to believe in the midst of the hardest time I’ve ever gone through in my life.

As we lived our theology we were able to shine the light of Christ in this difficult time. We were told by an atheistic Dr. that it was obvious that something gave us the grace to deal with what was going on and that wasn’t something everyone had. The day before we left the NICU one of the nurse practitioners told another person on the NICU staff, “The entire time mom and dad have been here they have said they were praying for a miracle and by golly I think they got one.”

When we were able to bring Liz home I preached a series of messages called Life Lessons from the NICU about things we learned. We sent them to some nurses that had especially helped us during this time and some of them kept them on their computers and gave them to other families in the NICU to help them.

We pray daily for God to completely heal Liz and expect to one day bring her to church, watch her do the penny march and hush her because she’s talking during the service. But if not, God still hears and answers our prayers. He still loves us and He still loves Liz. He is still sovereign and He is still good and so He will still work through her life and ours for our good and His glory.

[Kelly speaking] As you know “Life with Liz” is still complicated, but it is great.  Lizzie will turn three in January and start preschool in a class just for kids like her.  We ask you to continue to pray.  At this point in her life, she has totally confounded all those in the field of medicine.  Since we have no diagnosis, no one has any way of explaining away her progress.  Every noise she makes, every sippy cup she drinks from, every time she holds her head up, we are able to give glory to God.

 

In the years since we originally gave this testimony, Lizzie has been diagnosed with a rare genetic disorder called PURA syndrome. Kids with PURA Syndrome have errors affecting one gene (PURA) while kids with 5Q31 can have a deletion of PURA and up to 50-60 neighboring genes. When Lizzie was originally diagnosed she was one of 9 known cases. There are now several more known cases. Here is a link with more information about PURA Syndrome if you are interested.

 

http://www.purasyndrome.org/

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One thought on “Life With Liz

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  1. Stacy & Kelly- Thank you for sharing your ‘faith journey’-even while in the midst of it. You are in my prayers!

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