This is a special gift we received from Arthur’s Uncle Mac. With all the cards, messages, and encouragements, I wanted to be able to remember and cling to the verses and passages of Scripture during this time. So, if you send us a reference, this is where it is going.
We had an ultrasound today. Our appointment was at the Women’s Institute in Midtown where we were sent back in July after receiving Arthur’s diagnosis. Last time we pulled up, we were filled with anticipation and discussing when we would reveal the gender to ourselves and to our families. Last time we were here we were in shock, trying to comprehend the phrase “not compatible with life outside the womb”. Last time we left with deep sorrow, our minds spinning about what the future might hold for this little one and our family. This morning before I got out of bed, I laid there for a while as I felt him move around, thankful I had another day with him. Today, unless something happened on the way to our appointment, I was going to see him alive on that screen. Today, we prayed for peace. Today, we had no expectations.
We have met with a pastor at our church and he described very accurately the circumstance we have been in since that first appointment: with Arthur, we are at a crossroad. A crossroad of healing or heaven. We are standing here, waiting for direction. There is no indication of when we will know. With each appointment, we face the possibility of his home-going to heaven, or his healing on this earth. It is what has made this season so hard – the waiting. We know it will be one of these roads, we just don’t know which one or when.
For our appointment today, we weren’t feeling anxious. We just felt like we were waiting on instructions from the Lord; either more waiting, or one of these paths. We were led to the ultrasound room, looking forward to seeing our little guy no matter what happened. As the ultrasound tech probed my swollen belly, she confirmed a heartbeat. She showed us his hands and feet, his arms and belly and legs. He was being a little shy and tucked away, but it was good to see the evidence of life inside of me and some of the features of his body. His feet are tucked together and facing down. His heels are right up against my bladder (if you have seen me get up 2-3 times during the church service, it’s his fault). His head is up, closest to my heart. Oh, how good it was to see him. What a sweet boy he is, just like his sister. As the ultrasound tech left to talk with the doctor, she told Adele that she should give lessons to some of the adults that come into the room to observe ultrasounds. She told us she was one of the most well-behaved people she’s had in a room.
We met briefly with the doctor, who told us, “No news is good news.” They were primarily looking for extra fluid, which is a common issue with anencephaly babies, and can cause preterm labor. There seemed to be no issues for us at this moment. And while I was relieved that we had no complications, it wasn’t the good news I was hoping for. The prayers and pleadings for healing have not been answered. So we are still at the crossroad.
Waiting is hard. But this is where the Lord has us. I’m thankful the Bible speaks even to waiting – there is a purpose and hope in our waiting. We are grateful we are here waiting with Arthur, and grateful for another day with our sweet son.
“I wait for the Lord, my soul waits, and in his word I hope.” Psalm 130:5
“But they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary, they shall walk and not faint.” Isaiah 40:31
“The Lord is good to those who wait for him, to the soul who seeks him.” Lamentations 3:25
“But as for me, I will look to the Lord; I will wait for the God of my salvation; my God will hear me.” Micah 7:7
Thank you all who have prayed for us and for these appointments. We have felt strengthened and uplifted by you all. As you continue to pray, pray for us as we are waiting. We don’t know when we will walk down either of these paths. Ask the Lord to give us patience to wait well. To enjoy what we have today. To not worry about tomorrow. For Arthur’s healing, one way or another.
Artie and I work in college ministry, and this time of year is when families are dropping off their children at campus to start a new school year now and in the coming week. It has been 10 years since I came to Davidson, and I have been able to return to campus almost every year to participate in the annual Davidson Volleyball Alumni game. I have always enjoyed getting to meet the new team, connect with other alum, and pass the ball around. We just get to play – no pressure, no competing. Lots of laughter and fun. Being 6 months pregnant this past weekend, I was not able to fully participate on the court, but I still had a blast.
Artie and Adele had a daddy-daughter day, and I got most of the day to myself with my little Arthur. We had breakfast with the team. Got a Glacier Gulp from the coffee shop in downtown Davidson. Browsed the campus store where baby and toddler sized clothes were just a little too pricey. I told him about where I spent 6 years of my life (4 as a student, 2 as a Campus Outreach staff), where I met Daddy, where we got engaged and married. I showed him where I spent countless hours in Belk Arena, between the preseason 3-a-days, practices 6 days a week, and games on the weekends. We even played a little volleyball – they let me serve a few times, and me and my little guy got a few points!
I have great memories from my time at Davidson. I have friendships that I believe will last a lifetime from there. I have been thinking recently about how I would have responded to a trial of this magnitude during those years. There is no way. Too young and too immature. I would have been completely swallowed up by grief. But I see how much I have grown in a decade and I see His hand in the circumstances of my life during those years and how it prepared me to face this burden today. Looking back now, what I “suffered” through seems so small, but at the time it felt much heavier. My four-year struggle with academics at Davidson – it seemed that no matter how hard I tried, my grades didn’t rise like I would have hoped. Friends and teammates all had boyfriends, and feeling lonely in my singleness up against all the couples around me through most of college, and that was hard. And while I love the girls and coaches I had the privilege of playing with, there was always some conflict – some small things and some major issues – that weighed heavy on my heart (probably any girl who has played on a sports team can relate to that).
In these years since heading to college, I could not have imagined the road I would go on and the woman I would be in 10 years. There are many things I wish I could change to have made my time easier and more comfortable. Better grades for less work. Less time on the court and the weight room. No drama. Meeting Artie earlier. But it was actually those things not happening that helped me grow and mature. Although I did not know it at the time, God used many things to get my attention, redirect my steps, and protect me from harm. Most valuable of all was gaining a hunger and desire for God’s Word, which has been directing my steps since then and to this very day (Psalm 119:105).
Now while I can see the things I experienced in college helped prepare me for what our family faces today, I know the suffering and hardships I will face in this life are preparing me for the future.
“Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness.” James 1:2-3
“In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of you faith — more precious than gold that perishes though it is tested by fire — may be found to result in praise and glory and honor at the revelation of Jesus Christ.” 1 Peter 1:6-7
“Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him.” James 1:12
and some of my teammates might remember this being up on a notecard in the locker room:
“So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light and momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.” 2 Corinthians 4:16-18
What are you facing today that is hard? Maybe it’s a physical ailment. Maybe your child is being very difficult. Maybe your schedule feels overwhelmingly packed already. Maybe you or a loved one are facing death. Do you believe that it is preparing you for something? I don’t always have this in mind, but when I am reminded of it through verses like these, as a Christian, I have hope. Hope that the days will not always be filled with grief like this season we are in. Hope that I am being prepared for something down the road, just like the trials in college prepared me for today. Hope that this and all that is to come is preparing me for glory, face-to-face with Jesus.
“This is my comfort in my affliction, that your promise gives me life.” Psalm 119:50
I have this friend, Kim. I don’t know if many people get to experience a friendship like this, but I sure am thankful God has placed her in my life. It was 10 years ago this summer I got my roommate assignment for my freshman year at Davidson, and about 10 years to the day that we met as she moved into our dorm room. After only a few weeks, we knew it was a great match (bravo, Davidson, bravo). She quickly became one of my biggest fans (I played volleyball at Davidson).
We were one of the few original pairs from our class that stayed together all 4 years at Davidson. And I believe we might be the only pair that shared a room for all four years. Neither of us studied abroad and we never lived in an apartment with separate rooms. Other than Artie now, I have never shared a room with someone that long, not even as a child.
College is a time of self-discovery and we got to do that together. Big assignments, lots of papers and tests to study for, late nights studying. We also made big life decisions about what would be next. Shortly after college, we had the privilege of standing beside one another on the day we married our husbands.
And even though there have been many changes, many moves, many joys and disappointments, this friendship has not waned. And as we both are back in the Charlotte area and our families our growing, it has been nothing but a blessing to have my Kimmy just around I-485.
For those of you who know me and Artie, you know that we do not have our families nearby. My family is from Florida, Artie’s is from Connecticut. North Carolina is the middle point and we can very easily do a day’s drive to see either of our families. But during a time like this we feel the distance. We both come from great families who would do almost anything for us, especially during this trial. But in the gap of the physical presence of our families, we are so grateful to have friends who are like family.
Kim was there as we brought our daughter home from the hospital after her birth last spring. She brought us a meal when we returned home from our travels this summer. And chocolate. And a puzzle. And a movie. And books for Adele. Last week, I had a prenatal appointment with our midwife, but Artie was unable to be there because of timing and location. Kim was there as I dealt with billing, asked questions about delivery of anencephaly babies, and heard Arthur’s strong heartbeat. While each day is tinged with sadness, this ended up being a wonderful day, getting quality time with my best friend and hearing the signs of life of my sweet and busy boy.
If you ever go through something like what we are going through, I hope you have a friend like Kim. If you know someone who is going through a hard time, I hope you can be a friend like her.
Thank you to all who prayed for us on Wednesday. Arthur is growing and has a strong heartbeat. Artie has has been able to feel him move now too. Thank you to all who have reached out to us with letters, text messages, phone calls and gifts. Thank you to those who have initiated toward us. We have so many great friends who aren’t afraid to be near us in our sadness. We have much to be grateful for.
I am so thankful for all of you who have contacted me in some way, letting me know that you are praying for us. I want to thank you for your comments, your messages, and your letters. I read every single one. I cherish them. You have brought much encouragement to me through them.
Many of you, friends and family, have asked how you can help. We received Arthur’s diagnosis three weeks ago, and are just now settling back in at home after our summer travels. One of the things that is so hard for me in this is that life goes on as normal. I am still pregnant. Arthur will continue to grow. Adele is still a toddler and needs much of her Mommy and Daddy’s attention. I still have to meal plan and take care of the house, and Artie still works every day at the Campus Outreach Charlotte Resource Center. I will still have regular prenatal appointments and we will still prepare a birth plan. But, most likely we won’t be preparing a new room for him. We will likely not be having a shower receiving things that would help us raise him. We probably won’t be pulling out all the newborn and baby stuff from the attic. If we get any time with him after he is born, we will be planning for how to make the most of that. We will be making decisions we never thought we would have to make for any of our children. We serve a God who can raise the dead and perform miracles. But we will have to be prepared if He doesn’t intervene in that way. It’s hard to share these things, but I want to be honest about the things that come to mind and cause me grief in this season. It feels hard to ask for help right now because I know there will be a time in the future where the grief will be even more intense.
It also feels hard to ask for help because it means not only acknowledging that we need it but also fighting thoughts of burdening others. Having wanted to help others who have suffered, I often struggled to know what would be most helpful. I was always thankful when specific needs were shared. The thoughts below are just that – thoughts, and certainly not expectations. I write these with the many in mind who have sincerely told us to tell them if there is anything they could do. Thank you again for your gracious and loving offers.
INITIATE – as much as we want to see, talk, spend time with so many of our loved ones and friends, we have a diminished capacity to initiate to and coordinate with everyone in this season. We are in no way shying away from community – we know we need you – it would just be extremely helpful to us to be initiated toward.
For all: Like I said, I have loved receiving messages and letters. I read them all and am moved by your compassion towards our family. They mean so much to us. If you are reading a passage in the Bible and we come to mind, please share that with us. It lets us know you are sharing our burden with us.
For those in the area: there have been many offers of meals. Meals would be so helpful. If you are one of these people, send a message to Artie or me, proposing a day or time. “Would it be helpful if I brought you a meal this week?” My good friend did this 2 weeks ago – she asked if she could bring a meal to us when we got back in town – and that was relieving and delightful! Another friend left breakfast at our door the day after we found out about Arthur’s condition. Another made a meal when we were between travel. There have also been offers of babysitting to which I would say the same: I would love the help. It would be helpful to initiate a specific offer: “Kittery, would you and Artie like to go out Friday night and I watch Adele for you?” “Is there a day this week I could take Adele in the morning so you can have time to yourself?” Also, as a people-person, I’m always looking for things to do with Adele outside of the house in the mornings, or have people come be with us at our home. Anyone out there with a pool to help us on these hot days?
For those out of town: You might not be able to offer babysitting or drop off a meal, but you could contribute to a date night through a gift card to a restaurant. We are cheap dates and rarely go out unless we have a coupon for something. There are also some days when I feel overwhelmed with my life that sometimes it’s easier to go pick up something for dinner (or like this week, dinner was a complete failure – so Artie went to get Chipotle while I tried to pull myself together). Care-packages and flowers have been special too.
For the men: If you are in the area and babysitting and meals aren’t your specialty, initiating an offer to help Artie with yard work on the weekends would be a loving gift to us. With a needy wife and an active toddler, he can only do so much on a Saturday. There is a lot he wants to do with the backyard. We also have some rooms upstairs we have been intending to paint since we moved here last fall, but just haven’t gotten around to doing it.
For the artistic: you can use your talents to help us celebrate and remember Arthur. I didn’t do this with Adele and wasn’t planning on it in future pregnancies, but photographer friends, I would love the opportunity to have special maternity photos, if we are able to, since most of his life here on earth will probably be right here inside of me.
ACKNOWLEDGE – please don’t be afraid to talk about Arthur with us. We know that most people know now, and while you might not want to risk saying the wrong thing, silence can be just as hurtful as saying something wrong. We love him so. He is a part of our family. If you are around me, ask me how he’s doing. I’ll tell you about his movements and what food he’s been enjoying lately. Include him in conversation. Acknowledging his existence means the world to me because he is right here with me even if you can’t see him. Yes, it is painful to talk about the future, but we are trying our best to soak up every moment we have with him.
PRAY – this is the most important one. There is no one that can help us more than our heavenly Father, who hears your prayers and ours.
For those who want to know more specifically how to pray for us in this season of grieving and waiting, what is commonly known as the Lord’s Prayer, found in Matthew 6, has been on my mind for a few weeks and has been a model for my own time in prayer. It also happens to be the preaching content on Sunday mornings at our church over here at the end of the summer, which my soul has been blessed by.
Our Father in heaven,
hallowed be your name
The word hallow means “to honor”. It is my desire that through my life, my heavenly Father would be honored as he deserves. Pray that His name would be honored in our lives, including Arthur’s.
Your kingdom come,
Your will be done,
on earth as it is in heaven
God has inclined my heart to long for His Kingdom. He rules and reigns over all things. Arthur’s life and this trial is not out of bounds. He governs even this. There are things God can very well do. Fix his head. Make him live. Remove the pain we feel. And please pray for those things. But pray that His “will be done”, not my own, submitting to what He doing. Please pray that even in our grief and sorrow, we would be faithful to do His will and that we would trust what His will is for us in this situation. And pray also that the kingdom of God would come into the lives of those who do not yet know the Father, through our testimony and our ministry.
Give us this day our daily bread
Boy, do I need this one. We all do. Are we not all prone to worry about tomorrow, the coming week, the coming months? Jesus shortly after this segment on prayer talks about it: “And which of you by being anxious can add a single hour to his span of life?” Matthew 6:27. Like I said in a previous post, when my mind wanders to the days, weeks and months that lie ahead for us, I can only grieve more. Paul says it well in Philippians, “do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.” (4:6-7). Pray that God would give us what we need to live out today. Pray for this peace that surpasses all understanding. And pray for our minds to be guarded in Christ, not wandering off where they shouldn’t go.
and forgive us our debts,
as we also have forgiven our debtors.
And lead us not into temptation,
but deliver us from evil
I do not get a pass on certain things, sinful things, just because I’m going through something hard. I am tempted to be short with people, most immediately, Artie and Adele. I am tempted to be anxious and worry, thinking of all the worst-case scenarios. I am tempted to give up on my responsibilities as a wife and mother some days. I am tempted to neglect time with God. I am tempted to doubt. Jesus said to his disciples during a trying time for them, “Watch and pray that you may not enter into temptation. The spirit is indeed willing, but the flesh is weak.” Matthew 26:41. I am not a perfect person and I have already fallen in those areas I mentioned above. I need forgiveness for the sins I have committed and strength to overcome the temptation to do it more.
So with our routine prenatal appointment this Wednesday, pray these things. For the next ultrasound at the end of the month as well. We are weak, but He is strong. He is the Giver of life, our Sustainer, our Healer, our Comfort, and our Hope.
“Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you.” 1 Thessalonians 5:16-18 ESV
This seems pretty close to impossible to do when you are facing something really hard. Pray without ceasing? That one seems the most doable when you feel the need for God to give you strength, hope and His presence every day. Rejoice always? Give thanks in all circumstances? How do you do that when faced with the dire news of our unborn son?
But upon further study, upon further understanding of the story of the Bible, who God is, and what He has done, this can make sense even in the hardest things. Even the author, Paul, hadn’t had an easy life – “imprisonments, with countless beatings, and often near death. Five times I received at the hands of the Jews the forty lashes less one. Three times I was beaten with rods. Once I was stoned. Three times I was shipwrecked; a night and a day I was adrift at sea; on frequent journeys, in danger from rivers, danger from robbers, danger from my own people, danger from Gentiles, danger in the city, danger in the wilderness, danger at sea, danger from false brothers; in toil and hardship, through many a sleepless night, in hunger and thirst, often without food, in cold and exposure. And, apart from other things, there is the daily pressure on me of my anxiety for all the churches” 2 Corinthians 11:25. How could he rejoice during all this and give thanks to God? Our rejoicing is not in our circumstances, but in our God. Our circumstances are always changing, but our God is not (“Jesus Christ is the same yesterday and today and forever.” Hebrews 13:8). Because God has been so good to us, even in our rebellion against Him, we have a reason to be joyful – and no circumstance on this earth can take away the beautiful and glorious thing He has done (Romans 5:8) So we, too, can like Paul say we are “sorrowful, yet always rejoicing” (2 Corinthians 6:10). And giving thanks? Our situation could always be worse. But we can be thankful for so much in Christ, mainly that He has not left us separated from Him and we have fullness of life in the life to come.
God has graciously given me eyes to see His goodness towards us even in this hard time, and I have much to be grateful for. Let me share with you a few of them:
The circumstances of the ultrasound – I see the midwives at Charlotte OBGYN at their Arboretum location. July 10th was the only day we could do the ultrasound and the only location available was the main office at CMC Medical Center near uptown. I would not have been able to be seen by the specialists at the Women’s Institute until after the weekend had I not been at that location, and they got me in upstairs right away on a busy Friday.
Neale Family Vacation – back in the spring, we planned to spend a week with my side of the family in the NC mountains from July 12-19. My family was in Charlotte starting the 9th (my mom was at the ultrasound, thank you, Lord). Being weary from grieving over the weekend, this could not have come at a better time and was exactly what I needed. My family was a blessing to us during such a needy time.
Support, Encouragement and Prayers – in the past 3 weeks, we have been overwhelmed with these. There were messages on Facebook, emails, texts, handwritten letters. Breakfast at our doorstep, dinner just when we needed it between trips, chocolate, fresh flowers and puzzles. Offers of meals and babysitting, connections to those who’ve been down this road. The church has been particularly good to us. Pastors and elders praying for us and wanting to be of help. Cards and letters from brothers and sisters in Christ. Even though many of you said you didn’t know what to say, just saying something meant so much to us. We will need more of that in the months to come.
Examples – we have friends who have modeled before us how to suffer well. Family deaths, miscarriages, and other hard trials. They were open and vulnerable about what they were going through, so we were able to see how God sustained them in their suffering and made them more beautiful and faithful people because of it. I am also thankful for the biblical examples of Job and Paul whose accounts are recorded in Scripture.
Adele Joy – this girl. I know this sounds crazy to say about a toddler, but she is the most mature 15-month-old I know (at least on July 10th) – she came with us to the ultrasound and patiently sat with us as we cried and waited and met with multiple people for over 3 hours, all as we went into her lunchtime and naptime. She is such a sweet-natured girl and has given me countless hugs, kisses and snuggles in the past few weeks. She has been a “Joy” in the midst of great sorrows for our family and exactly what we have needed in this season. God hand-picked her for our family, we are sure of that.
My husband – I cannot begin to imagine what this would be like walking this road without him. Artie is the leader of this family and has led us with strength and tenderness. I saw this in him when his father passed unexpectedly last year. He clearly loved his father deeply and shed many tears in his absence. But the grief did not consume him. He stepped up in a big way in the wake of his dad’s death and was a blessing to many, most of all his family. He has not been afraid to feel deeply and to express his emotions. His love runs deep for his son as well, and his strong leadership will be a blessing to me when the times get especially dark. He is my greatest earthly blessing, and sometimes I can’t believe he chose me to be his wife. We have been living out our marriage vows, “in joy and in sorrow”, in our soon-to-be 4 years of marriage. I would not want to do this with anyone else and I thank God daily for the gift he is to me.
My God, my Savior – for all that I mentioned at the beginning of this post. He has not left me in my sin, He has given me a living hope. A hope beyond this world. He has given us His Word, and the Scriptures that I have read all these years have come alive to me in a new way these past few weeks (as you can probably tell by the blog posts). They have been a “lamp to my feet and a light to my path” (Psalm 119:105) on this dark road. Without my Lord, I would not be able to walk through this with any hope. I can be like Paul, sorrowful over the circumstances, but rejoicing in the eternal reality.
What about you? We all are probably suffering to different extents. Maybe it’s something hard like we are going through, or the death of a family member or friend, or a difficult relationship, or joblessness, or bodily aches and pains. Even in your present circumstances, can you give thanks to God for something? Do you have joy even in the midst of your pain? It is not easy, but I have been richly blessed by thinking about such things and hope you will be too.
Arthur’s diagnosis is what every parent fears hearing in that ultrasound room. It has been two weeks since we received the devastating blow. My days go well when I live in the present. Today, I am pregnant with a sweet baby boy. When my mind wanders into the future, speculating what might happen in the coming months, dwelling on the days he won’t be with us, I am filled with deep sorrow and anxiety.
Today, Arthur is alive and kicking (literally kicking, I can feel him moving throughout the day and he gave a big kick the other day while we were riding in the car) in the comfort and warmth of my body. Maybe it is because we have been busy with traveling, but thankfully I can say I have been able to spend some time the past week and a half living in the present. In these two weeks, I have thought often about the value of Arthur’s life and how I can make the most of it as he grows inside of me. The story of the pregnancies of John the Baptist and Jesus has come to mind:
“In those days Mary arose and went with haste into the hill country, to a town in Judah, and she entered the house of Zechariah and greeted Elizabeth. And when Elizabeth heard the greeting of Mary, the baby leaped in her womb. And Elizabeth was filled with the Holy Spirit, and she exclaimed with a loud cry, “Blessed are you among women, and blessed is the fruit of your womb! And why is this granted to me that the mother of my Lord should come to me? For behold, when the sound of your greeting came to my ears, the baby in my womb leaped for joy. And blessed is she who believed that there would be a fulfillment of what was spoken to her from the Lord.” Luke 1:39-45 ESV
In this passage, Mary had gone to visit Martha after being told that she was going to give birth to the Messiah. The baby (John the Baptist) inside Elizabeth actually responded to the events happening outside of her body. The baby boy leapt for joy! I’m so thankful this little moment is recorded in Scripture. I receive weekly updates during my pregnancy that inform us how the baby is developing, and at this point in my pregnancy, doctors and experts say that babies can hear things from outside their mother’s body. I love that science confirms what the Bible has already said to be true.
Since we learned of Arthur’s condition, I am grasping in a whole new way the truth of this verse: “So teach us to number our days that we may gain a heart of wisdom.” Psalm 90:12. I want to make the most of my days, of Arthur’s days. I desire to have a heart of wisdom, the ability to live with my priorities in alignment with the heart of God. I have been sharing my life experiences with Arthur these past two weeks, and I want to do so for however long we have him. If he can really hear my voice, I want him to know what is important in this life and in the life to come. For those that know me, I have always loved taking pictures and documenting memories, and when it comes to Arthur I long for you to know him. And if not in person, then it is here on this blog that I can share these special moments and memories with you, dear friends and family.