The short version is that many Trisomy 18 children do not live to term; those who are born don't usually live very long because of the many genetic challenges.
Rick and Hannah began to pray and to prepare. As part of the preparation, they decided to learn the baby's gender so they could name him—or her, as it turned out. We began to bond in a special way with Elizabeth Irene, not knowing if we would ever be able to meet her alive. Hundreds joined us in our praying. We were all blessed by the outpouring of love.
Later, a test showed negative for Trisomy 18, but we were also told it had a 20% false negative, meaning it shows there is no Trisomy 18 when there is. Given this news but also seeing the images on ultrasound, they—and all of us—began to plan for a special needs child. We were heartened to think that Elizabeth Irene might escape the terminal diagnosis of Trisomy 18.
Just a couple of weeks before a tentative date for a C-section, needed for Hannah's health as well as Elizabeth's, another test confirmed that Elizabeth did indeed have Edwards Syndrome. It was a heartbreaking reality. Rick and Hannah went back to their earlier research and made a plan, as there is more than one way to approach the birth of a child with Trisomy 18. One way is to try every extraordinary medical intervention possible, which may give some additional time with the child but would also keep the baby apart from her parents while she would be in NICU. Another option is to keep the baby with the parents and family and have as much time as possible before death comes, giving love and comfort as much as possible. Both options are chosen by loving parents; Rick and Hannah made the prayerful decision to choose the latter, providing only extra oxygen to help her with her breathing.
Elizabeth Irene was born by C-section on Friday, January 15. She was able to go to her family home on Sunday, January 17. She went to her heavenly home on Thursday, January 21. She lived for seven days, and those days were precious to us all. Her big brother Robert and big sister Olivia welcomed her but knew she was sick with a kind of sickness which meant her little body might not survive but that her soul would go to be with Jesus.
These seven days were full of exhilarating joy and excruciating pain for our family as we watched Elizabeth's life ebb slowly away. Toward the end, we prayed for the release of death; yet, when the moment came, fresh outpourings of tears flooded from our eyes. Elizabeth herself seemed comfortable for her time with us, and she was held by someone who loved her practically every moment of her life.
One truth that sustains those of us who are believers: death is no impediment to God's ability to save. What some see as hopeless, we see as an ultimate victory.
On Sunday, January 24, we had a Memorial Service for Elizabeth. I was honored to be asked to take the lead in the service. Here is what I had to say...
Memorial Service for Elizabeth Irene Rogers
Born, Friday, January 15, 2016
Died, Thursday, January 21, 2016
Service, Sunday, January 24, 2016
Comfort. What can we say? It is in times like these, when comfort is needed the most, that those of us who make a living with words realize the near bankruptcy of our craft. We want to somehow say things that will make things better, but the words often seem stilted or trite. We fear ending up like Job’s friends. Scripture says when they “heard about all the troubles that had come upon him”—including, as you recall, the death of his children—“they set out from their homes and met together by agreement to go and sympathize with him and comfort him.” They went to do what we have come to do. You may not recall, but they did a good job of it—for a while. “When they saw him from a distance, they could hardly recognize him; they began to weep aloud, and they tore their robes and sprinkled dust on their heads. Then they sat on the ground with him for seven day and seven nights. No one said a word to him, because they saw how great his suffering was.”
Job’s friends did okay when they simply came and cried with him and for him. Their presence brought comfort. It is when they opened their mouths and tried to explain what they could not explain that they actually did the opposite of their stated purpose of comfort. We can learn from that. We often feel that we have to say something, and sometimes that something comes out as trite or silly or just plain wrong. Job’s friends told him that his suffering, his pain, his tragedy was sent by God. We know from Scripture that was not the case. While God allowed it, it was Satan who was responsible.
We often hear cries of pain from those who are grieving. The first question that leaps to their lips is “Why?” “Why, God? Why did you let this happen? Why didn’t you fix this?” We may question God’s wisdom and question God’s love for us. We may question if we want to follow Him. That’s natural coming out of a heart of pain.
We see it in Job. He cried out in pain, wishing he had never been born and questioning God’s kindness. At that point, Job’s friends felt the need to defend God. They went further than a defense of God—they accused Job of secret sin. “That’s why this happened, Job.”
Oh, if only his friends had let him cry out for a while! He needed to grieve. We need to take care when we want to comfort others. Here’s a good rule of thumb: when in doubt, be silent. Your presence for a few moments speaks loudly enough. Your simple words of love and sympathy and promises of prayers will suffice. Already, you have brought comfort to Rick and Hannah and all of us by your kind words, by your acts of kindness, by your food and flowers, by your presence here today. On behalf of Rick and Hannah, I say to all of you, thank you! Thank you for being true friends in what has to be the hardest thing parents will ever experience.
Rick and Hannah, I know both of you trust God; neither of you blame Him. I know you still wonder, though, why Elizabeth couldn’t have had more of a chance at life. And I just want you to know it’s okay to cry out to God in pain and even to question His care if that’s what you feel at a particular moment. He’s big enough to take it. Job wasn’t the only one who did such things. All through the Psalms we see devout men of God crying out to Him in their pain. Listen to some of David’s questions:
“Why, O Lord, do you stand far off? Why do you hide yourself in times of trouble?”
“How long, O Lord? Will your forget me forever?
How long will you hide your face from me?
How long must I wrestle with my thoughts and every day have sorrow in my heart?”
Another Psalmist wrote this: Psalm 42.1-5
As the deer pants for streams of water,
so my soul pants for you, my God.
My soul thirsts for God, for the living God.
When can I go and meet with God?
My tears have been my food day and night,
while people say to me all day long,“Where is your God?”
These things I remember as I pour out my soul:
how I used to go to the house of God
under the protection of the Mighty One
with shouts of joy and praise among the festive throng.
Why, my soul, are you downcast? Why so disturbed within me?
Put your hope in God, for I will yet praise him, my Savior and my God.
Listen, don't misunderstand me. I am not encouraging you to question God’s goodness or care. I am just giving you permission to cry out to Him in your pain when it comes. You see, unless you are honest with God and tell Him how you feel in your grief, He cannot as easily come to you with the comfort of His Spirit. I mean, if you are angry with me but don’t tell me, we can’t work through it. When you admit to God your questions and share with Him your pain, then He can better bring His healing to your heart. In each of the Psalms when we hear someone crying out in pain and even questioning God’s care, we see by the end, the Psalmist shares words of praise because God came and comforted them even as they questioned His care.
He will do the same for you, Rick and Hannah, and He will do so for all of us. Like Job, like David, like the others, we also cry out in pain when we see the unfairness of life. We weep when we see those like Elizabeth who die, in our estimation, way too soon, because of a cruel genetic disorder. We hate to see the darkness reign; we long for the pure light to shine. We long for a place where good is always done, where we are ever with our loved ones, where everything is made right.
While we affirm with Scripture that since we live in a fallen world, not everything that happens here is God’s will, that it is the thief who comes to kill, steal and destroy and Jesus came to bring life, life to the full, we likewise affirm the sovereignty of God—that He is able to do anything and everything that He desires.
And while we do not believe that everything that happens here is His will, we do believe—strongly—that everything is in His hands. That’s why Job was able to say, “The Lord gives and the Lord takes away; blessed be the Name of the Lord.” Even though we are told in Scripture that Satan was the one who was responsible for Job’s suffering under God’s permission, Job was concentrating on the sovereignty of God. And there is no better place for us to leave Elizabeth than in the sovereign and loving hands of our God.
In Romans 8.28, we see one of the greatest promises of Scripture: “And we know in all things God works for the good of those who love him, who have been called according to His purpose.” It doesn't say that all things are good. But God is so strong that He can turn these seemingly senseless things into good here, even before we are perfected in heaven. I hear some say, “Well, everything happens for a reason.” I prefer to say: “God puts reason in everything that happens.” In other words, so much senseless and terrible suffering comes our way in this fallen world, things that God did not plan in His heart, but He says, “I will not let this happen without redeeming it! I am strong and I am loving, and I will bring good out of this bad for those who love me.”
What good could possibly come out of the death of Elizabeth? God has already brought a close-knit family closer still. He has used this time to show His love to each of us from the churches of which we are a part. We may better understand what the Bible calls “the fellowship of His suffering.” He reminds us again that we are not the masters of our fate. We need to know that. For me, I know that in the last few days He has given me a new capacity for tenderness and compassion for the weak and fragile. Only in the days and years ahead will we be able to see all the good God will bring, so let’s look for His hand as He works in our lives.
Comfort. God is the God of all comfort; He will bring care. He has not forgotten us.
In The Magician’s Nephew, one of the stories in the Chronicles of Narnia by C.S. Lewis, the little boy named Digory hurts because his mother is sick and seems to be at the point of death. The Great Lion Aslan, the figure of Jesus in these stories, gives Digory the responsibility to right a wrong he has committed. Digory has tears in his eyes as he thinks of his mother and pleads for something to cure her. Here’s what it says as we pick up the story:
Up till then [Digory] had been looking at the Lion’s great feet and the huge claws on them; now, in his despair, he looked up at its face. What he saw surprised him as much as anything in his whole life. For the tawny face was bent down near his own and (wonder of wonders) great shining tears stood in the Lion’s eyes. They were such big, bright tears compared with Digory’s own that for a moment he felt as if the Lion must really be sorrier about his Mother than he was himself. [from The Magician’s Nephew]
Yes, Jesus weeps with us in this loss. God cares for us in our trials. He comes to us with His Spirit, but remember: He will often use others to be His hands, His hugs, and His voice. And let us all remember that often times the hands and hugs of God are what are needed more than anything else at the moment.
So, Rick and Hannah, let me say on behalf of your family and friends, we want to be there for you in your grief. If you want to talk, we can just listen. If you need to lash out at the injustice in the world, it is safe to do so with us. If you want to cry, we will cry with you. If you want to ask us anything, we are glad to talk or to simply perform simple tasks that may help you. If you just need to lay aside your grief for a while and laugh and talk about everyday life, we are with you. Feel free to tell us. We love you and can only imagine the depth of your pain. And I want you to know that you have already comforted us.
Hannah, when your mother and I were having you and the rest of our kids, we decided to go “old school” and not find out before birth whether any of you were a boy or a girl. People would often ask, “Is it a boy or a girl?” Sometimes, I would say, “Yes, it is.” Most times, I would just say, “We want to be surprised.” And it’s amazing how many times a person would respond, “Oh, you don’t care, huh, as long as the baby’s healthy?” I was a bit bothered by that. I finally began to say, “Well, as much as we want a healthy baby, we will be glad even if the baby is not healthy.” While mom and I were blessed with pretty good health with all our children, Hannah and Rick, you have shown us how to be loving and brave and careful and thoughtful even when a child is not healthy. I know that wasn't your goal. You weren’t putting on a show. You were concentrating on Elizabeth. But as you have walked with Jesus and sought His wisdom, you have been models for all of us who have seen you and the way you first prepared for a Trisomy 18 child and then prepared for a child with special needs when you were told it wasn’t Trisomy 18 and then tried to wrap your heads around the return to that diagnosis in the final weeks of pregnancy. You two have acted with such grace and courage under pressure that you have comforted the rest of us simply in the way you have lived your lives in Christ. Thank you.
Elizabeth Irene Rogers lived just about nine months, most of that time inside her mother’s womb. She spent just seven short days with us after birth. She worked hard for six full days, and on the seventh day she entered rest. Seven short days—yet she has made a permanent and indelible mark on all of us who have known her.
What was she like? She was like a fragile flower. Each of us wanted to be so careful as we held her lest she break. She was humble, rarely crying out for anything. She was content to simply be there with her family, cradled in the arms of mom or dad.
In the few days we knew her, it turned out that she was a thief or sorts—she stole the heart of every single person who ever met her—and hundreds, maybe thousands of those who only saw her beautiful images on the screens of their computers, tablets, and phones. She had a beautiful little face—and when she opened those eyes—how we loved it when they seemed to meet our own! Her precious little hands, not perfectly made according to our expectations of human anatomy, endeared her to us even more. How sweet it was to feel her grasp when you placed your finger in her hand.
The main thing I want us all to remember about Elizabeth Irene Rogers is that she was, for her entire life, comfortable. Her mom and dad, especially, but also her grandparents, her siblings, her aunts, and friends of the family handled her so gently and tenderly; she was constantly comforted. There was rarely a moment—literally only when being changed—when she was not being held—held by someone who loved her. Her mother wrapped her up, skin to skin, so that their hearts might beat together in unison. Her dad held her for hours, and the rest of us had to get in line to have our turn. She was given opportunities for milk and sugar water and pacifiers. Her little lips were kept moistened. Our hearts were broken for her, but precious little Elizabeth was kept comfortable, and as much as we would have liked to have done more, that was the best that could be done, and that was what Elizabeth needed most in her short time with us—the comfort of love.
Elizabeth got to go to her home. Her brother Robert and sister Olivia were able to hug her and kiss her and hold her—and what a wonderful memory of Mom and her sisters and others watching Beauty and the Beast together while Olivia held mommy’s baby. Robert and Olivia welcomed her with arms open wide.
Yes, she got to go home—to her earthly home—for a few short days, and now she is really home, home in heaven with our Lord Jesus, for she is in the capable hands of our loving and merciful God. Jesus, when infants were brought to Him, said, "Let the children come to Me." The Bible doesn’t speak a lot about the deaths of infants. What we read is reassuring. King David spoke of how he would go to his son who had died. We see that God once took the life of a child of the royal line to spare him from suffering the judgment of the rest of his family. Paul writes in Romans how “where there is no law, there is no transgression,” that we could explore as it applies here. But I don’t really have to look any further than the character and the grace of our God that is revealed on every page of Scripture. We could not be more confident that little Elizabeth is in heaven! She is there because of the manifold grace of God.
Oh, how empty our words of comfort would be if there were no heaven! The grief of parting would be forever, for we would be without hope.
It is interesting. I have seen tragedies drive people away from God and I have seen tragedies draw people closer to God. The ones who flee from God might say something like, “I can’t love a God that would allow something like this to happen.” I understand their pain, but I also feel sorry for them.
I am reminded of the time Jesus brought an extremely difficult teaching about embracing Him fully as the Bread of Life. It says that some turned away from following Him because they could not accept this teaching. Jesus, saddened, I think, that some turned away from the truth, asked the Twelve, “You don’t want to go away, too, do you?” Simon Peter, so often one who put his foot in his mouth, hit a home run on this occasion with his answer. “To whom shall we go? You have the words of eternal life.”
As we seek to put death in perspective, we would be wise to pay attention. Tragedies and what we see as the unfairness of life may tempt us not only to lash out at God but to abandon Him. We may not always be happy that He didn’t come through as we thought He should or hoped He would, but who else is there to run to? There is no one else. Only Jesus has the words of eternal life. Listen to these...
John 14.1-6
“Do not let your hearts be troubled. Trust in God; trust also in me. In my Father's house are many rooms; if it were not so, I would have told you. I am going there to prepare a place for you. And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am. You know the way to the place where I am going.” Thomas said to him, “Lord, we don't know where you are going, so how can we know the way?” Jesus answered, “I am the way and the truth and the life. No one comes to the Father except through me.”
These are familiar words. But did you catch what Jesus said about the reality of eternal life? “If it were not so, I would have told you.” Jesus is the Truth and loves the truth and tells the truth. If this life was all there is, it would be sad, but He would have told us. If we were going to ultimately be joined together in some impersonal life force, He would have told us. But here it is: there is a loving Father who wants us all to live together with Him forever. He is gathering us to Himself. It is so. He has told us, and He would never lie to us.
We live right now in a fallen world, a world that so much of the time does not go according to God’s original plan, and that’s why we see such things as what has happened to Elizabeth. I have already mentioned that we cry out in pain when we see the unfairness of life. We weep with sorrow when death separates us from those we love. We long for a place where good is always done, we long for a place where we are ever with our loved ones, we long for a place where everything is made right. But what we are longing for is not to be found here, no matter how far or how long we look, because what we are longing for is not of this world. What we are longing for is the restoration of God’s original purpose in creation, for that still lives in our hearts. What we are longing for… is heaven.
Listen to what the Apostle Paul wrote about our sufferings:
Romans 8.18-25
I consider that our present sufferings are not worth comparing with the glory that will be revealed in us. The creation waits in eager expectation for the sons of God to be revealed. For the creation was subjected to frustration, not by its own choice, but by the will of the one who subjected it, in hope that the creation itself will be liberated from its bondage to decay and brought into the glorious freedom of the children of God. We know that the whole creation has been groaning as in the pains of childbirth right up to the present time. Not only so, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for our adoption as sons, the redemption of our bodies. For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what he already has? But if we hope for what we do not yet have, we wait for it patiently.
Yes, we live in a fallen world, and that’s why we see pain and suffering. While God allows it, He is not the author of it. He will put an end to it one day; until that time, we endure it as patiently as we can while God, in His mercy, allows others to put their faith in Jesus; He is giving them the opportunity to be saved along with us.
Until then, we rest in the truth that God causes all things to work together for good to those who love Him. He is working to bring good out of this pain. Let Him! We must not let Elizabeth’s death be in vain or our suffering fail to contribute to our personal growth. Let us love God more and let us love each other more because Elizabeth has touched our lives and taught us to love at an entirely deeper level. Let us be reminded that just as she lived a short life, so do each of us. Let us remember as believers that we are all aliens and strangers here, that this is not our home, and that we are just passing through. Let us fix our eyes on Jesus, and let us expect to see Elizabeth again!
Let's close with a vision of the restoration, of what God in His grace has in store for his people, those who through His grace place their faith in Jesus…
Revelation 21.1-5
Then I saw a new heaven and a new earth, for the first heaven and the first earth had passed away, and there was no longer any sea. I saw the Holy City, the new Jerusalem, coming down out of heaven from God, prepared as a bride beautifully dressed for her husband. And I heard a loud voice from the throne saying, “Now the dwelling of God is with men, and he will live with them. They will be his people, and God himself will be with them and be their God. He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.” He who was seated on the throne said, “I am making everything new!” Then he said, “Write this down, for these words are trustworthy and true.”
Amen! Our hearts have been continually breaking in these last days, but God has been continually knitting them back together again with His Spirit and His Word, and each time He puts them back together, He makes them a little bigger. And while we grieve today, one day we will grieve no more because of the loving-kindness of God. Let's praise Him today, for blessed is the Name of Jesus, our sovereign Lord!
