Looking for God’s Goodness in 2017

It many ways, 2016 was not a “good” year for our family. There were deaths in our extended family; we received a terminal diagnosis for our unborn child, who was stillborn shortly after; we struggled through another year without Dan having permanent employment. We felt, and still feel, a constant hum of stress over these difficult experiences.

We know we were not the only ones to struggle through this past year. Many families we care about, including several in our church family, experienced illness, death, and loss of other kinds.

Though on a much lesser level than sickness or death, it seemed like in 2016 there were an abnormal number of things around the house and on our cars that broke and needed repair.  And of course, there was always the day-to-day stress of just living—caring for a home and children, paying bills, making ends meet, working on relationships.

I have felt the past several months weighing on me pretty heavily. So recently during an editing project for my work, I was struck by something that Randy Alcorn wrote about God’s goodness. He was referencing Exodus 33:18-19:

Moses responded, “Then show me your glorious presence.”  The LORD replied, “I will make all my goodness pass before you, and I will call out my name, Yahweh, before you” (emphasis added).

Randy writes:

Moses requests to see God’s Glory. A person’s glory is that which most reveals their excellence and splendor (Proverbs 20:29). In response to Moses’ request, God says He will make all “His goodness” pass before him. Is that your view of God? When you think of His excellence and glory, is the first thing that comes to your mind “His goodness”?

Since reading that, I’ve been contemplating God’s goodness a lot as I look back over 2016. I realized I have struggled with doubt that He is good and has good plans for me and for my family (especially at times when life certainly doesn’t feel good).

I sat down to do some reading the other night, and saw that Scripture has a lot to say about God’s goodness, and how He extends that goodness to His children. Here’s just a few of those verses:

“The LORD is good to those who wait for him, to the soul who seeks him” (Lamentations 3:25).

“You are good and do good” (Psalm 119:68).

“For you, O Lord, are good and forgiving, abounding in steadfast love to all who call upon you” (Psalm 86:5).

“The young lions suffer want and hunger; but those who seek the LORD lack no good thing” (Psalm 34:10).

“Surely goodness and mercy shall follow me all the days of my life” (Psalm 23:6).

“If you then, who are evil, know how to give good gifts to your children, how much more will your Father who is in heaven give good things to those who ask him!” (Matthew 7:11).

“I am the good shepherd” (John 10:14).

“And we know that for those who love God all things work together for good, for those who are called according to his purpose” (Romans 8:28).

As I start 2017, my challenge to myself is to look for God’s goodness over the course of this year. I’m sure the next twelve months will bring their own challenges (though we really do hope for a quieter year!), and I know some of those difficulties are not going to be revealed as part of His good plan until eternity.

But I’m also going to trust that God will be revealing His goodness to me today, if I open my eyes to look for it. It may be as simple as my toddler’s giggle, the taste of a delicious meal, the warmth of a fire, a friend’s smile. I know His abundant goodness will be there: “I remain confident of this: I will see the goodness of the LORD in the land of the living” (Psalm 27:13).

 

An opportunity to give in Isaiah’s honor

Each year at Christmastime, Dan and I enjoy sitting down with the girls and looking through the gift catalog for one of our favorite ministries, Samaritan’s Purse. They have so many outreaches around the world – from providing needy families in the developing world with livestock and poultry, to feeding hungry moms and babies in desperate places – it’s always hard to pick what we want to support each year. We always think, “We wish we could support them all!” Our hope is that our girls will grasp the truth that it makes us happier to give than to receive, especially during Christmas (Acts 20:35).

When I was flipping through this year’s catalog, the option to help provide surgery for a child with a cleft lip jumped out at me, since one of the first things I was told was wrong with Isaiah was his cleft lip and palate. Evelynn also questioned me closely about Isaiah’s lip after she saw him in the hospital, so I knew this stood out in her mind. I thought this would be an  opportunity to give in Isaiah’s memory to help a precious child, perhaps living halfway around the world from us, experience this healing surgery!

We would be honored if you’d like to join us in giving to this project in Isaiah’s memory. The full cost to cover a surgery is $250 but there is an option to help share the cost for $25. You can do so here.

What a beautiful thing to think that because of our efforts, perhaps a child and his or her family will receive an incredible, life-changing gift in the coming year!

Dear Isaiah

Dan wrote this letter from us to share at Isaiah’s recent service.

Dear Isaiah:

It’s hard to find the words to express exactly what we’re thinking and feeling right now. Mere words probably aren’t enough to convey it all anyhow, but we wanted to take a few moments to try anyway.

It seems like we were just getting used to the idea of having a baby in the house again – you caught us a bit by surprise! It would have been okay though, because there is not a day that goes by where your older sisters don’t remind us of why we love being parents. We were looking forward to holding your little hands, listening to your little laugh, and seeing what mischief you were going to get into to tease your sisters – we imagine you’d be pretty good at being impish. Mostly, we were beginning to get excited to see how much love and joy you would add to our little family.

Turns out, by the will of God, that was not to be.

We won’t get to see you grow, take your first steps, laugh, smile, or practice using your words. We won’t get to see you reading your favorite book to your teddy bear, or chasing your sisters around the house. We won’t get to see you crashing your toy cars on the kitchen floor, or jumping into puddles just to watch the mud fly. We won’t get to watch you learn to respect your momma and treat your sisters like princesses. We won’t get to encourage you to always see justice done, or to always be kind to people, even when you don’t feel like it. We won’t get to push you to always do what is right, even if it might not benefit you to do so. We won’t get to see if you’ll be the leader who stands on the front lines and rallies others to his side, or if you’ll be the soft-spoken leader who leads quietly by example. We won’t get to lead you to the cross and to the all powerful King who died on it to save us all from ourselves, or teach you to follow Him and look for Him in every circumstance.

Instead, you’re the one who has taught us.

Though your time on this earth was fleeting, you’ve already taught us both how to be grateful for what we have – family, friends, church, home, and health. You’ve taught us not to take for granted the people in our lives. You’ve taught us that difficult things in this broken world are impossible to overcome without church and family. You’ve taught us to empathize with the suffering and hurt of others, what to say and what not to say to those who hurt, and how to just listen. You’ve taught us how to be bold in the face of what seems to be impossible circumstances. Most importantly, you’ve taught us to recognize how God answers prayer even in the deepest and darkest of nights, and that He provides for us in every circumstance, through answered prayers and the kindness of others.

You are now with the Father. The one we all call Father. The Ultimate Parent, the King who is so big, so wise, and so loving that He created parenting itself. You have gone straight to the source. And though your time with us was exceedingly short, we can’t help but think that in the end, that’s the best place for you to be. You do not have to try and learn about the perfect Father through the murky lens of your two imperfect parents – you are with the source of every virtue, every value, and every good and perfect thing the world has ever known. The beginning and the end of even time itself, the One who holds the entire universe together in the palm of His hands, the One who has promised to heal all our broken hearts – He is the one to raise you, to teach you and to show you all you need.

We’ll be with you before you know it, little buddy. In light of eternity, 60 or 70 years is nothing. Say hi to your great grandparents for us, and you should probably go spend some time with your Aunt Tricia – she can appreciate what you faced more than anybody else we know can.

We love you, little man. Keep the light on for us.

Love,

Daddy and Mommy

Isaiah’s birth story

After we knew Isaiah was ill, I was helped by reading the blogs of other parents who’ve had a child with Trisomy 18. Their stories and experiences felt like something solid to hang onto in a sea of unknowns. I got to see that other people had indeed walked this road before us, and it gave me hope that we would be okay through whatever happened.

One thing I couldn’t find was many details on was what a labor and delivery for a stillborn baby would be like. So for what it’s worth, I want to share our experience with our friends who have asked how it went, and also to leave it as a resource for other parents.

On Thursday, October 20, I started realizing that I hadn’t felt Isaiah kick or move since the previous evening. Even though he was tiny, he had a pretty regular pattern of kicks I was used to. It felt like something had changed, but I decided to give it until Friday morning to be sure. I don’t think I slept much that night – my mind was racing with what might be ahead. I was saddened to think of his death, but also scared that if this was a false alarm, then there might be many scares ahead in the coming months. I wasn’t sure my heart could take that.

On Friday, the doctor’s office told me to come in that afternoon for some monitoring. It so happened that we had previously planned for the girls to spend the weekend with Dan’s mom, so she was able to come early to be with Sienna and pick up Evelynn from school. I still marvel at the timing of everything.

The nurse took us back and performed an ultrasound. I knew right away that Isaiah had died – he was lying so still on the screen. “I’m sorry, I can’t detect a heartbeat,” she told us. They did a level 2 ultrasound to double check. I don’t think I’ll ever forget seeing his still little body and that flat heartbeat line. We knew then for sure that our little guy had already gone to be with the Lord.

The doctor came to talk to us about our options: we could either do a D&C, or go through a labor and delivery. There was no question in my mind what I wanted to do: we wanted to have a baby to hold and see, both to honor Isaiah and to give closure to us.

They sent us home for the night with a plan to come back on Saturday evening (October 22) to start the induction process. And it was going to be a process – we were warned that it could take 1, and quite possibly 2, full days for him to be born. (A woman’s body just isn’t ready at 27 weeks to deliver a baby, for good reason.)

It was actually such a gift to have that evening and most of the next day to prepare our hearts, get our bags packed, and finish up some chores at home. I began to feel peace – a sense that we were being carried through this experience. In fact, Dan and I both slept better that night than we had slept in weeks.

We checked in to Legacy Emanuel on Saturday night. Right away they started me on misoprostol, which I took orally every 3 hours.

I knew it was going to be a drawn out process, but it was still hard to sit and wait, not having any idea how long it would be before I delivered our baby. On Saturday night and throughout Sunday, we read some books, watched some movies, and mostly waited and got restless. (Really grateful for the great meds they gave me at night so I could get some sleep.) The doctors explained that this would not progress like a normal labor – it could seem like nothing was happening, and then all of sudden he would be delivered.

I knew I wanted to get an epidural at some point to keep myself comfortable, but I had a hard time knowing when to go ahead and get one. (Being stuck in a bed for hours on end didn’t sound so great!) On Sunday evening, my body showed a few signs of progressing, so the doctor encouraged me to go ahead and get the epidural. I had forgotten how not fun that is (actually, with both my previous labors, I waited until I was truly desperate for relief, so I hadn’t really minded having a needle put in my spine!) Still, it was worth it to be able to relax and get some rest Sunday night.

By Monday morning, I was hopeful things might be moving along. But when the doctor checked me, I was still only dilated to 2 cm. Talk about discouraging! I had yet another dose of the misoprostol. It had been 36 hours since my first dose.

I was starting to get really anxious at this point – I was done with getting poked and prodded and examined. And each time a doctor came in to talk with me, they would ask, “Has anyone told you that such and such could happen?” They said that since Isaiah was being delivered breech, his head could stuck during delivery. Also, I was told that because the placenta is not ready to detach, there could be complications and they might have to take me to the operating room for a D&C. I was also warned that he might be delivered suddenly and no nurse or doctor might be in the room.

The Lord was so faithful to answer each of my fears in these areas. A little after 7 a.m. on Monday, October 24, my water broke. One of the doctors happened to stop by at that time. She told me that if I felt any more pressure, to call my nurse right away. As she was talking with me, I felt things shift and asked her to check. Sure enough, our baby was on his way and with just a couple of pushes he was born (so different than a regular birth!) at 7:40 a.m. This was a small thing but I was so grateful the doctor was right there with me when the delivery started.

We had the sweetest nurse that morning. At our request, she took Isaiah to be cleaned and wrapped in a blanket. I knew his poor little abdomen had so many abnormalities, and to be honest, I didn’t want those to be my lasting memories. She wrapped him in a sweet blanket and put a little hat on his head, so we got to enjoy seeing his face and admire his tiny hands and feet.

I think seeing and holding Isaiah was the hardest point for Dan, since everything was finally real to him at that point. Because I had experienced everything physically inside of me, it wasn’t as much of a shock to see him as I had worried it might be. I felt strangely calm and peaceful.

It was a marvel to see just how tiny he was, weighing just a touch over a pound and being 10.5 inches long. He had long fingers and feet, and dark, arched eyebrows. I wanted to see if his nose looked like the girls’, but it was so itty bitty, it was hard to tell. I was surprised he didn’t have any hair yet on his head (it must have been too early, because the girls were born with full heads of hair). He was so tiny and fragile.

We spent some bittersweet moments holding our little guy while we waited for the rest of the delivery (thankfully, everything went fine and there was no need for any procedures).

Dan and I are so grateful for how respectful, kind, and gracious each of the staff at Legacy Emanuel were, both of Isaiah’s little life, and of our needs and wishes. The child life specialist (a counselor of sorts) made a priority to come and meet with us that morning, and help us talk through whether we would have our girls see little Isaiah. It was tough to decide what was best. We didn’t want to traumatize or scare them, but we did want to give them closure.

In the end, we decided to have them see him briefly. Dan’s mom, Debby, brought them up to the hospital later that morning. I had missed my sweet girls so much! With Debby’s blessing, we had delayed telling them that we were in the hospital and that Isaiah had passed until they came to see us that morning. We wanted them to have a good weekend with their Nana, and not be sad or scared when mommy and daddy weren’t there to give hugs and reassurance. (I had worried that Evelynn, being pretty perceptive, might guess something was up, but she said she had no idea over the weekend.)

When asked if she’d like to see Isaiah, Evelynn said yes. We explained that he didn’t look like a normal newborn, that he was very tiny with dark skin, and that his lip had a boo-boo on it (cleft lip). When the nurse brought him in, she just wanted to look and observe. Our oldest girl really has to process things internally. Sienna was fascinated, and said “Ooooh, baby!” She wanted to give her baby “Isa” love pats.

Soon afterwards a wonderful volunteer with Now I Lay Me Down to Sleep came to take some pictures of our family and of little Isaiah. What an amazing group of giving people! We are incredibly grateful for the gift of those photos she gave us (you can see some of her photos below).

To finish our story – I was doing well enough that the doctor was fine with me going home after lunchtime. It was strange to walk out of the labor and delivery unit with no baby inside of me and no baby in our arms.  But we were so ready to be home with our girls and get some rest.

I guess the way I would sum up our experience of that weekend is with the word carried. We felt carried through the difficulties by our friends and family who showed love to us through their words and tangible acts of service. We were carried by the caring and compassionate staff at Legacy. Ultimately we felt carried by the Lord through the process. I love how the prophet Isaiah pens the Lord’s promise (so many gems in this book!):

Even to your old age and gray hairs I am he, I am he who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you. (Isaiah 46:4)

– Stephanie

Photo credit

Lightning strikes

Some kind people in our lives have encouraged us to keep posting on this blog and sharing about our experience. Since our hope is that these posts will be an encouragement to others facing a similar diagnosis, perhaps years from now, we plan to share some more thoughts in the coming days and weeks. This is a post I started a while ago, before Isaiah’s birth, but decided to go ahead and publish now. We’ll be sharing more about his birth story soon.

There’s a saying we’ve all heard over the years: “Lightning never strikes the same place twice.” Did you know it’s a myth? It’s simply not true. As one storm chaser writes, “Lightning can strike any location more than once.”

If I knew that fact before, I guess I must have forgotten it. Because when I first knew something was very wrong with our baby, and that it was quite possibly a chromosomal defect, I was dumbfounded. How could lightning “strike twice” in my family?

Some of you might know that I am not an only child. My parents had a daughter six years before me with Wolf Hirschhorn Syndrome, a very rare chromosomal defect (1 in 50,000 births) resulting in profound disabilities. After testing,  they were told it was a de novo occurrence not linked to anything in my parents’ genetic makeup. She lived for 27 years and passed away the January before Dan and I got married.

My mom was a dedicated, loving, and faithful mom to Tricia. But I also saw how very hard her disability was on my parents. Initially not knowing the extent of our child’s issues, I will admit that my fear was, “What if we are looking at raising and loving a severely disabled child long-term?” I had seen firsthand how difficult it could be.

We soon found out from the amniocentesis results that Isaiah did indeed have full Trisomy 18, which affected every cell in his body. And it was another de novo occurrence, not caused by anything in either of our genetic makeups. While Trisomy 18 is one of the most common chromosomal abnormalities, it still only occurs in 1 in 5,000 births. As Dan put it, it’s like we “won” the genetic lottery.

So how could God possibly allow both my mom and me to experience having a child with a chromosomal defect? I never in a million years would have guessed we’d share that in common.

I guess the world might say, “This was just random lightning strikes, which happened to land in the same place. Random accidents caused by faulty cells.” I think a Christian perspective says that as difficult as it might be to accept, God has a plan and a purpose behind allowing, and even planning, these children to be born with disabilities.

That is not an easy truth for me, or really for anyone, to swallow. We can be okay with the idea of God just permitting something that Satan planned for our hurt, or with the idea that sin caused something to happen, and God is sad about it, but He would never have chosen it for us. Maybe there’s a sense that we let God “off the hook” in tough situations.

But I’m not certain those perspectives are as comforting as we might think.

Charles Spurgeon put it this way:

“It would be a very sharp and trying experience to me to think that I have an affliction which God never sent me, that the bitter cup was never filled by His hand, that my trials were never measured out by him, nor sent to me by His arrangement of their weight and quantity.”

I love that. There is comfort in trusting God’s control, His plan, His sovereign purposes—even when they seem impossible to grasp from our perspective. It doesn’t necessarily take away the pain from hard things, but I’m glad to know my life isn’t at the whim of random chance and evil intents.

I know Christ-loving people will land in different places about the doctrine of God permitting, allowing, or planning difficult things. Certainly we can all agree that because of human sin, this world isn’t the way God originally intended.

I do know that Scripture isn’t apologetic about God’s creation of what we humanly see as “imperfections.” Psalm 139 is a beautiful description of God’s personal involvement with crafting a tiny person in utero. Each person He creates is worthy of marvel.

I also know He claims to be behind even what’s seemingly only random: “The lot is cast into the lap, but its every decision is from the LORD” (Proverbs 16:33). He even doesn’t shy away from claiming His sovereign purposes in creating people with disabilities. In Exodus 4:11 , the Lord tells Moses,

“Who has made man’s mouth? Who makes him mute, or deaf, or seeing, or blind? Is it not I, the Lord?” 

In his book If God Is Good, Randy Alcorn talks about David O’Brien, a brilliant man with severe cerebral palsy, who’s now with the Lord. In a talk he gave years ago, David referenced John 9:1-3. Randy describes the heart of David’s message:

The disciples wanted to attribute a man’s blindness to human sin, either his or his parents’. Jesus corrected them: “Neither this man nor his parents sinned.” Then Jesus stated the disability’s purpose: “This happened so that the work of God might be displayed in his life.” The “so that” is critical. David said it rules out haphazardness, demonic control, or bad luck. Rather, Jesus declares a deliberate, divine purpose in that blindness. While God would receive great glory in the man’s healing, surely he had a purpose for the man’s life long before his healing.

I don’t pretend to understand God’s purposes in allowing Isaiah to have Trisomy 18, or my sister to have Wolf Hirschhorn Syndrome. And I’m beginning to realize that in some ways, that is okay. I don’t need to perfectly understand in order to trust. One of my favorite songs puts it this way: “I don’t need to see everything. Just more of You.”

Perhaps one day in His presence, God will make His purposes abundantly clear. For now, His sovereignty is a good place to rest.

—Stephanie

We never explain suffering by saying God is helpless or that Satan got the upper hand or that there are mere accidents in the world. We always handle suffering, our suffering by saying, even though we don’t understand all the answers for why this particular suffering came or that particular suffering came at this particular time or this particular intensity—we don’t understand those particulars—nevertheless, we do understand what God has taught us; namely, that he is sovereign, that he is good, and that he always has purposes for our everlasting joy. —John Piper, “How Do We Prepare Our Children for Suffering?”

Hello and goodbye

Isaiah Cole was born this morning at 7:40 a.m. He was a sweet and tiny 1 lb., 10 1/2 inches long. Tiniest little hands and feet I’ve ever seen. We’ll share more in the days to come. Thank you everyone for your prayers and for supporting us in this time. We are back together with our girls and resting at home. ❤

Choosing thanksgiving for Isaiah’s life

In case you missed it, in our last post we shared that we learned Isaiah passed away peacefully in utero this week.We are going in to start the induction process tonight. Before we go, I had a few things on my heart I wanted to share.

Both secular sources and Christians say that there’s something powerful about gratitude –  something about the act of giving thanks that changes us. Scripture says, “I will offer to you the sacrifice of thanksgiving and call on the name of the LORD” (Psalm 116:117). Sometimes choosing to give thanks is more of a sacrifice than other times.

There is still so much I don’t understand about this pregnancy and the “whys” of God allowing certain situations. Isaiah’s whole life was a surprise to us, and though we never felt the timing was ideal, we knew that we would love this child when he or she arrived, just as much as we love our girls. My pregnancy with Evelynn was a surprise too, but as the months went on and we knew we were expecting a healthy little girl, we found it easy to thank God for the unexpected blessing of her life. I felt strongly that God had a special purpose for creating her and the timing of her life and birth.

I admit it’s been harder to affirm this time when everything seems like such a disaster. I have struggled to find joy in this pregnancy, and after we received our news, I wondered, Why did God give us this surprise, only to give us a baby boy that has Trisomy 18? But I know there is value in thanking God for Isaiah’s little life, no matter how short it was and how broken his little body was. I want to keep the practice, even if I don’t feel like it or see the “why” in the moment.

Though our hearts are heavy yesterday and today, Dan and I can still see evidence of God’s hand already. Here are some things I’m thanking Him for:

• We had already planned previously last week for the girls to spend this weekend with their Nana. They are safe and loved this weekend, enjoying time with her, and we didn’t need to worry about childcare.
• We had a restful night of sleep last night, the best both of us have had in a long time.
• Because I had some forewarning with Isaiah not moving, I had time to prepare my heart for the news, and also time to put some things in order for work and our home.
• The doctor’s office was so accommodating, fitting us in to get an ultrasound.
• We were worried because we hadn’t yet had our planning meeting with the Fetal Care Coordinator, Sonja, to lay out our wishes for Isaiah’s birth. However, she was available yesterday and was able to spend time with us. She also made the call and got us scheduled to have a photographer from Now I Lay Me Down to Sleep come take keepsake pictures after Isaiah’s birth. This means the world to me.
• The sunshine this Saturday morning is beautiful. After days of gray, dreary rain, I’m loving seeing the sun and the fall colors it brings out on the trees.
•  The other weekend our pastor talked about “adversity friends”, the kind of friends who rally around you in times of difficulty. What a precious gift our friends and family have been to us in this time, with their acts of love, their words of kindness, and their prayers. They are teaching us how to love others in their times of adversity.
• We knew we favored burial for Isaiah over cremation. After talking with Sonja, we were discouraged about looking into options for burying him because the cost is so excessive. One of our wonderful pastors helped us find a local funeral home that provides a casket at cost for bereaved families of infants, and a cemetery will donate the plot. It means so much to us to know we will have a place to go to honor and remember him.

When I was driving to Bible Study last Tuesday, I found myself praying two things: that Isaiah would know that he is loved, and that the Lord would take him peacefully into His arms.

I had no idea God would answer those prayers so quickly.

Earlier this week, a sweet friend gave me the gift pictured here. She wrote me later, “You are sharing Isaiah with the angels. Looks like they get to be the ones to teach him how to walk.”

When I opened her gift, it reminded me of a story I read years ago in one of Dr. Walt Larimore’s memoirs, Bryson City Secrets, about the miscarriage he and his wife experienced. (You can listen to Dr. Larimore share his story here, and I highly recommend it.)

After his child’s death, Dr. Larimore was devastated. In his words, “I cursed my Father. I fumed, I wrestled. And He was quiet. He said nothing.” Dr. Larimore sat down in his quiet time chair, and began to search God’s word. He doesn’t remember what He read, but he walked away with the sense that “God is good, that He is right, that He is righteous, that His love for us knows no bounds. And in all that He does and allows, whether good or bad, if we love Him and are called according to His purpose, He works it for our good.”

Dr. Larimore continues, “I felt arms come around me, and I had the sense that I was sitting in a lap, that I was being comforted by someone who loved me and understood pain.”

Sometime later, Dr. Larimore took care of a little boy who was diagnosed with bone cancer. Little Danny was a child of great faith, who loved Jesus and His word. His cancer progressed, and eventually he was on hospice, close to death. During his last visit to Danny, Dr. Larimore took his hand and prayed that Danny’s passing would be peaceful. That’s when Danny opened his eyes and said, “It will be, don’t worry – I know I won’t be here much longer, but Dr. Walt, I know where I’m going.”

“Where?” Dr. Larimore asked.

“I am going to Heaven,” Danny replied.

“How do you know?”

Danny was quiet for a moment before replying. “Because Azar told me so.”

“Who is Azar?” Dr. Larimore asked.

“You don’t know Azar? He is my guardian angel, and he comes here and sits with me and we talk about Heaven.”

“What does he look like?”

“He’s big and he’s strong, and he has golden hair, and he carries a big sword. Azar is my angel and my family’s angel. It is Azar who says He will take me to Heaven.”

Danny continued, “You haven’t met him? Are you sure?”

“Not that I remember,” Dr. Larimore said.

“That’s very interesting.”

“Why is that very interesting?”

“Well, because he says he’s your guardian angel too, and your wife’s and Kate’s [Dr. Larimore’s first daughter],” Danny explained.

“Azar was with you the night that you lost your baby, and it was Azar who took your baby to Heaven. It was Azar who held your wife as she wept.”

Dr. Larimore writes in his book what else Danny said:

“Azar told me about it. He said that one day you were very sad, Dr. Larimore. Azar told me that he was with you. And he said that after you had wrestled with him all afternoon, you finally crawled up in his lap, and he held you close while you cried. He told me he cried with you. …Azar took your baby to Heaven, and then he came back and was with you that day. He comforted you.”

…I could not remember telling anyone the story of my afternoon after the loss of our unborn child – not even Barb.

I remember being touched the first time I read this story, and it has new meaning now. I love that Scripture tells of us of God’s tender care for His smallest people:

“See that you do not despise one of these little ones. For I tell you that in heaven their angels always see the face of my Father who is in heaven.” (Matthew 18:10)

How we look forward to meeting our son. Heaven is sweeter with him there. Thank you, Lord, for Isaiah’s life.

– Stephanie

Heaven’s Gain

We found out today Isaiah passed peacefully in utero this week. We feel such an odd mixture of sadness, sorrow, and some relief too, knowing he is at peace. Scheduled to start the induction tomorrow evening at Legacy Emmanuel. Thank you in advance for your prayers and love. 💙

What’s in a name?

It’s been a week since last we posted, and we’d like to take a moment to update everyone on where we’ve been and what we’ve learned over the last few days. When last we posted, we were waiting until we could get an amniocentesis to determine baby’s gender and get a rough diagnosis of what we were dealing with.

On Tuesday, we went back to the Legacy Emanuel Maternal Fetal Medicine clinic for an amniocentesis, and to meet with the Fetal Care Coordinator, Sonja, about all the services Legacy has to provide for people in our position and for children who are born with some distinct challenges. Despite having heard some disquieting stories about gigantic needles and the doctor’s warnings about cramps and other unpleasantness, the amnio went very well. Stephanie says the needle was less uncomfortable than the innumerable blood draws she’d already been through for all of the cancer treatments and testing from five years ago or so. The doctors told us that the tests ought to have the gender and at least a rough idea of a diagnosis in just a few days.

The meeting with Sonja was fantastic – we are blessed and overjoyed that Legacy has a very, very well developed program for people who find themselves as expectant parents of just about every form of special needs child imaginable. The first thing she did was apologize for not having read through the pages and pages of information in our file – she mentioned that the office was a little busy right now. Sonja said that her office was currently involved with somewhere between 50 or 60 families – a revelation that came as somewhat of a shock to us. It was a reminder that we are not the only people to face impossible odds with the life of a child on the line.

That said, the office has a wonderful partnership with Randall’s Children’s Hospital, and the office is prepared to pretty well do whatever they need to do to meet our wishes and desires. Sonja even said she’d put us in contact with the counselors at Randall’s to help us talk with our other children about what is happening and what will happen with baby. We’re so thankful that the hospital is willing to work with us, and not hold expectations of what we will do with this child or how we will address the issues that will inevitably crop up. They are very much supportive of allowing parents to determine what’s best for their child, and also helping parents remember their baby with photographs, notes, or other mementos, whatever the parents like.

Finally, that brings us up to date. This morning, Stephanie received a call from our Genetic Counselor with the preliminary results of the amniocentesis.

Firstly, the results find that there is definitely triplets in the 18th chromosomes – meaning this baby has some form of Trisomy 18. There is a deeper set of tests that are being run in order to determine to what degree baby has Trisomy 18, but that will take another week or so to hear back on. The counselor said that it is most likely that baby has the most common form of Trisomy 18, which is where every cell in baby’s body is affected by it, but the deeper tests will verify if this is the case or not.

Secondly, we were told that baby is in fact a little boy.

The gender was hugely important to us, because we both felt like it would allow us to name this baby, which we believe is the first step in making baby part of our family. We don’t want our son be something to be swept under the rug, viewed as an unfortunate episode in our family’s history that we simply don’t talk about. We want Evelynn and Sienna both to know that they had a brother, however briefly, and that his tiny life was precious to both of their parents. We want them both to know that they will meet their brother eventually, and that it’s perfectly acceptable to be sad that they can’t get to know, love, and play with him here. Above all we want them to know that his life was just as precious to their Creator and King as anyone else’s is.

We’ve decided to name our son Isaiah. When we first were discussing creating this blog, a verse of Scripture popped into my (Dan’s) head: “Behold, I am doing a new thing; now it springs forth, do you not perceive it? I will make a way in the wilderness and rivers in the desert” (Isaiah 43:19). We very much feel that this is a wilderness we find ourselves in, and we have no idea where we’re headed or why we’re headed there. At the same time, paradoxically, we believe that God is absolutely charting the course for our family.

I remembered a second passage while putting this blog together, also from Isaiah, and it pretty well perfectly summarizes why we like the name:

Why do you say, O Jacob, and assert, O Israel,
“My way is hidden from the LORD,
And the justice due me escapes the notice of my God”?

Do you not know? Have you not heard?
The Everlasting God, the LORD, the Creator of the ends of the earth
Does not become weary or tired.
His understanding is inscrutable.

He gives strength to the weary,
And to him who lacks might He increases power.

Though youths grow weary and tired,
And vigorous young men stumble badly,

Yet those who wait for the LORD
Will gain new strength;
They will mount up with wings like eagles,
They will run and not get tired,
They will walk and not become weary.

-Isaiah 40:27-31

We have always prayed that God would be glorified in all that we do as a family. I must confess I have no idea how God is glorified through the death of the person who’s the closest to unstained innocence as it is possible to be on this earth. I don’t know what we’re supposed to be learning, or what God expects for us in this stage in life. All we can do is hold on to the promises He’s already made:

For I know the plans I have for you,” says the LORD. “They are plans for good and not for disaster, to give you a future and a hope. In those days when you pray, I will listen. If you look for me wholeheartedly, you will find me. I will be found by you,” says the LORD.

-Jeremiah 29:11-14

Again, we could never thank everyone enough for their prayers, support, kind words, and gifts. It’s all been a little overwhelming.

If you’d like, we could still use prayer:

• Calming down enough to truly sleep has continued to be very difficult for both of us. When it’s quiet, that’s when the worries, concerns, fears, and emotions are the loudest.
• Wisdom in creating the care plan for baby Isaiah – there are so many things to weigh, determine, and decide, we want to do what’s best and what’s right.
• Peace for all of our hearts, and strength for all our spirits. Stephanie, Dan, and Evelynn are all facing challenges in processing such difficult circumstances, and the challenges each faces are different. We have all accepted that God has chosen to call Isaiah home, but that doesn’t necessarily remove the fears, feelings of inadequacy and guilt, or the sadness.

Thanks for bearing with us – we’re not sure how the next few months will go, but we are sure we couldn’t do it without you all!

With Love,

Dan and Stephanie

When life takes yet another new direction…

Earlier this year, we got a big surprise: ready or not, baby #3 was on the way! This brought a lot of new things to think through: how were going to fit 3 car seats, let alone the gear necessary for 3 kids, in our car? Where was baby going to sleep? How would Sienna adjust to being a big sister? What would life be like with two kids under the age of 2?

One thing we never thought about was, “What if our baby has something wrong?”

Last Friday, Stephanie was anticipating our routine anatomy ultrasound, looking forward to finding out whether we’re expecting a girl or a boy. She had been feeling a little anxiety about the scan, so a few close friends were praying, but after having our two beautiful, healthy girls, we anticipated only good news. Dan had to work, so his mom was able to go and help keep Sienna entertained and get first dibs on knowing the gender.

Things started out normal enough. But after a few minutes, the ultrasound tech grew silent and serious. “I’m going to be quiet now, and just make some measurements. It’s the way I do things,” she said. But after seemingly going over the same measurements again and again, she abruptly announced that she would be back in a bit. Several minutes passed, with Stephanie feeling more and more anxious and certain something wasn’t right.

Eventually, she returned with the radiologist, who took a few more measurements and calmly told us that they were seeing some very concerning things, including a club foot, abdominal abnormalities, and the baby was measuring small. Stephanie’s OBGYN didn’t add any details on the phone, but let us know we would need to see a high-risk OBGYN and would receive a more in-depth ultrasound. “I’m just as shocked as you are,” she said.

Based on the limited information we had, we decided to start doing some research to prepare ourselves for the worst, or at least for the range of possibilities. One real possibility seemed to be Trisomy 18 or Trisomy 13, very serious conditions where the baby’s body contains an extra copy of a chromosome. (Trisomy 21, or Down’s Syndrome, is the most common trisomy.) Stephanie read a lot of blogs and articles and wrote down some questions.  Unfortunately, we weren’t able to get in to Legal Maternal and Fetal Medicine until today. It has been such a long, long week. We grieved, we worried, we spent sleepless nights, we wondered what in the world to pray for.

Our appointment today started out with our ultrasound. We were really grateful for the tech, who was kind and kept us updated with her progress: “I’m measuring the arm, I’m looking at the brain…” Her calm manner helped Stephanie to relax. But as we watched, we could tell that things just weren’t right. This little one didn’t move like our previous babies did, and the head shape didn’t look like Evelynn’s or Sienna’s did during their ultrasounds. We also thought we saw some weird things.

After half an hour, she consulted with the perinatologist, who then came to talk with us. The doctor began walking us through what she was seeing. There was so much to say…. from the bottom of this little one’s feet to the top of their head, so, so much was wrong.

Baby does indeed have restricted growth and club feet, as well as an omphalocele (some of the baby’s bowels are outside the body), an abnormal head shape, heart defects, brain defects, scoliosis of the spine, facial abnormalities, and a cleft palate. She also didn’t detect that the baby is moving its legs and feet normally. There is more that was mentioned, but we will have to wait for the final ultrasound report to remember it all. It was a lot to take in. What we do know is that these combined things give baby an extremely poor prognosis.

We had so hoped that we could at least tell the gender and give this baby a name, but they couldn’t determine that. We will have to wait for the results of our amniocentesis to get a final verdict of the gender.

Her feeling was that yes, this was either most likely Trisomy 18 or Trisomy 13, though she admitted there can be other conditions that would cause defects like this so we couldn’t be sure 100% without the amnio results.

We were able to share with her right away that abortion is not an option for us. Our desire is to honor the gift of this baby’s life, and allow God to take him or her home when He deems right. After that, we met with a genetic counselor, and it was really encouraging to find out that Legacy has a wonderful perinatal hospice program. They work often enough with families facing terminal diagnoses like ours, and have an experienced coordinator who can help us with everything from forming a birth plan to planning for special memory keepsakes.

The counselor told us that for babies with these kind of dire issues, they plan on the 90-90-90 guideline: generally, 90% of babies die in utero; of those born alive, 90% die in the first few days; and of those that survive, 90% die by their first birthday.

No one expects to be planning their child’s birth and death at the same time, but that is where we find ourselves.

Our final meeting today was with the doctor who will be overseeing the rest of Stephanie’s care during the pregnancy. She was kind and supportive and kept using the phrase “your baby” which really helped us feel that she will respect and honor our wishes. Some of the first words out of her mouth were, “I’m so sorry you have to go through this.”

There will be some special things to watch out for, since Stephanie has some extra amniotic fluid due to the baby not being able to swallow and process the fluid normally. This happens often in cases like this. They will be watching that to make sure the fluid doesn’t become too built up or interfere with her lung function.

Next week we will go in for the amniocentesis, and to meet with the palliative care coordinator. We should have some preliminary results from the test after a couple of days.

There is so much unknown ahead. To be honest, right now our hearts are feeling pretty numb. Today’s news wasn’t truly a shock after what we’ve read… but it was a sad reality that some of our worst fears have some true. It seems this baby will be going on to eternity very soon. It is hard to know how to let ourselves get attached, how to parent a child who has such a short time to live, how to think and feel and pray.

We know grief and loss is a process…. and so much of this journey will be unpredictable. Stephanie read this quote from C. S. Lewis’s A Grief Observed:

I thought I could describe a state; make a map of sorrow. Sorrow, however, turns out to be not a state but a process. It needs not a map but a history, and if I don’t stop writing that history at some quite arbitrary point, there’s no reason why I should ever stop. There is something new to be chronicled every day. Grief is like a long valley, a winding valley where any bend may reveal a totally new landscape. As I’ve already noted, not every bend does. Sometimes the surprise is the opposite one; you are presented with exactly the same sort of country you thought you had left behind miles ago. That is when you wonder whether the valley isn’t a circular trench. But it isn’t. There are partial recurrences, but the sequence doesn’t repeat.

We can’t thank everyone enough for their support, prayers, kind words, and gifts. They are our lifeline right now.

Some things we would love prayer for:

• Sleep. It has been difficult for both of us to rest lately.
• Wisdom for helping Evelynn process. She was so, so looking forward to meeting this baby and while we have kept things very general, she knows the gravity of the situation.
• Peace for our hearts for whatever is ahead. We are at peace with God taking this child before birth, but we know that this labor and delivery will have its own challenges and griefs. We are scared.

This feels like uncharted territory. But we trust that God will “make a way in the wilderness and rivers in the desert” (Isaiah 43:19). He has proved faithful in every challenge we’ve met over the years and we know this won’t be an exception.

With love,

Dan and Stephanie