Choosing To Carry Arthur

I know this is a touchy subject and the topic of abortion is a very emotional one. My intention is not to bring judgement on those who have chosen differently. There is deep hurt in all women who have faced this decision whether they choose to terminate a pregnancy or continue carrying a baby with a poor or fatal diagnosis. But I feel like I must speak out on our situation, because we are in a minority and people need to know of the option we have chosen. Although the road we are walking is a painful one, it is beautiful and has the potential to bring much joy and lasting impact – I am speaking from my own experience thus far, and seeing the beauty, depth and character in the lives of others who have already walked this journey and similar ones. Upon finding out the diagnosis of anencephaly for their child, 95% of couples choose to terminate the pregnancy. So when I say I feel in the minority, I really feel it. Artie and I are in the 5%. This post is for those who would ever find themselves in the position we are in, to give you a reason to choose life even in the face of death.

Artie and I sat in the ultrasound room stunned by the words, “Something is very wrong. Your baby has a heartbeat. But your baby will not be compatible with life outside the womb. I am so sorry.” A few things that followed felt odd to me. The doctor then started giving us information and statistics about future pregnancies, and my mind couldn’t process it. It was as if this one was already over. I kept asking her to clarify that she was talking about things far in the future, future pregnancies and children, while my mind was stuck presently in this horrible moment, deeply concerned for my child still living in my body. Then she began to talk about our options from this point. It caught me a little off guard that terminating the pregnancy was the first thing offered.** The thought hadn’t even come to my mind. I remember not even consulting with Artie before telling the doc we would continue this pregnancy for however long we would get with him. It didn’t need to be brought up again. My love for this child began well before that scan, and it wouldn’t cease now. In fact, it intensified and deepened in those minutes after. For me it wasn’t even a choice. His life mattered more than whatever dreams I had for our family.

Let me share with you why it wasn’t even a decision for us, even in one of the most emotionally vulnerable times of our lives. It all comes from who God is:

God is the Creator – of this world and of all life. He is in control and nothing is hidden from His sight, even in the days we didn’t know we were pregnant, God knew and was doing work.

“When I look at your heavens, the work of your fingers, the moon and the stars, which you have set in place, what is man that you are mindful of him, and the son of man that you care for him? Yet you have made him a little lower than the heavenly beings and crowned him with glory and honor.” Psalm 8:3-5

“For you formed my inward parts; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made. Wonderful are your works, my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depth of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them.” Psalm 139:13-16

“Know that the Lord, He is God! It is he who made us and we are his; we are his people, the sheep of his pasture.” Psalm 100:3

Oh how I love these verses, especially now! Not only does it give me confidence that God knows me and loves me, but that He knows and loves Arthur so much more intimately than I ever could. Each and every person ever created has dignity and worth. The diagnosis of anencephaly has a range of outcomes: some only know life inside the womb, some pass during delivery, some live a few minutes after birth, some a few hours, some a few days, and in the rare cases months. I do not know the number of Arthur’s days. It’s not up to me to determine them. God already knows and it’s not a surprise to Him. It’s perfectly planned. Why is Arthur’s life valuable and worth continuing? His value doesn’t come from his health, but from the fact he was created by God.

God works in mysterious and miraculous ways – check this story out:

“As [Jesus] passed by, he saw a man blind from birth. And his disciples asked him, ‘Rabbi, who sinned, this man or his parents, that he was born blind?’ Jesus answered, ‘It was not that this man sinned, or his parents, but that the works of God might be displayed in him.'” John 9:1-3 

Keep reading through the rest of the chapter, it’s too long to put on here. Jesus goes on to give this man the ability to see, something he had been missing his whole life. He performed a miracle and this man’s life was a testimony to others of who Jesus was. I have thought of this passage often. Why is Arthur missing part of his skull and brain? Is it because I did something wrong? Is it something he deserves? No. It is that the works of God might be displayed in and through his precious and valuable life. What would the parents of this man have done if they had the technology of ultrasounds and testing for abnormalities? Many people these days, in their situation would choose to end the pregnancy either because the quality of life for their child wouldn’t be what they would have hoped for, or the burden of dealing with his deficiency might be too much for them to bear. What if they had and they had missed this opportunity for a miracle to happen in his life? What about Arthur? Maybe he will be miraculously healed. Maybe God will do something different. I don’t know, it’s not up to me to determine. But God is going to do a work through his life one way or another, and I can’t wait to see it. That is another reason I choose to carry Arthur.

God gave himself –

“but God shows his love for us in that while we were still sinners, Christ died for us.” Romans 5:8 

Currently living in the midst of this situation, I can see how people would choose to end their pregnancy and have dealt with some of those emotions myself. Why delay the inevitable? You can start the grieving process and move on to try again for another child sooner. Who wants to go through the third trimester discomforts when there’s possibly no baby to take home at the end of it? Understandable feelings, but to act on those feelings is opposite of the gospel, the “good news” of what Jesus did. It’s, “You die so that I can live more fully”. That’s not love – it’s love of self. Jesus says “I’ll die so that you can live more fully”. Jesus shows his love by giving up Himself for us. I wrote in another post about Jesus wrestling with his emotions (here), but He ultimately chose love.  If I am to be a follower of Christ, I need to do things His way, following His example. “If anyone would come after me, let him deny himself, take up his cross daily and follow me.” Luke 9:23. I am choosing to carry Arthur and love him sacrificially, to die to parts of myself in a sense, because Jesus chose to carry the cross and die for me.

As you can tell, this decision is not just a personal one, but a deeply theological one. These children’s lives matter and are worth being celebrated, just as your’s matters. Arthur is our son whether we only hold him for a short time or whether we get to watch him grow up. I pray and hope that more would choose to not end these pregnancies, not just to have more people on our team, but because I desire more for people (particularly the parents) to experience love in a deeper measure and for these children to experience that love, being valued for their existence, not just their contribution to the family.

This little hat was made especially for Arthur, by a woman who makes crocheted hats specifically for babies with anencephaly, and free of charge to the families that receive them. What a wonderful gift. If you would like to contribute to Lisa Borders’ ministry or receive some yourself for your child, please visit her Facebook Page, Anencephaly Hope.

I am more than happy to talk with you if you have questions or even a differing view point. Please send me a private message or an email, and I will try to get back to you when I can.

 

 

**I will clarify that I have had a great experience with our healthcare team – our nurse midwives and OBs, the high-risk doctor, and the perinatal specialists and palliative care team. They have been wonderful to us given such a terrible circumstance. We were never pressured into having an abortion, it was just the first option given to us.

Bed Time

My bed has been one of my favorite spots since being a mother and especially in the past few weeks, and not for the reasons you might think. Not because the tastes of fall have brought cooler nighttime temperatures which has made it colder in the house and much more desirable to snuggle up under the covers. Not because of the times at night when my mind wanders too far or in the morning when I have to face another day, and grief wants to keep me hidden there. Not because I just entered the third trimester and my body is tired from the end of a full day. But, what I really love about my bed right now – it’s where our best family time happens. It’s where we put on Adele’s ‘jommies’ after bath time and where she pillow dives, does somersaults, and jumps off into Daddy’s arms. It’s where we Facetime family before she goes to bed. And it’s the place we get to interact with and feel Arthur the most. Our nightly routine is so sweet. I feel him move throughout the day, but this is our special time, just him and us, after his busy sister is down for the night. My feet are elevated, pillows all in their proper place, and I can lay there, watching and feeling him move. The moment I get settled into bed, he starts his play. I don’t believe his position has changed much since the last ultrasound because he likes to send me to the bathroom about 3 times before I actually fall sleep. He usually continues this game through the night, and the interrupted sleep makes me never want to leave my bed in the morning – ha! But how can I go back to sleep when my time with him might be so short? He is so alive. I cherish those bedtime acrobatics, the nighttime bathroom trips, and the mornings I lay there for a while just feeling him move. It’s a good tired that I won’t wish away.

Thanks to some friends, I have a once a week morning time to myself. This past week, Arthur and I had some alone time at Panera, in one of the cozy chairs with some decaf.

 

The Anchor ⚓

It was a particularly hard week for me. I am thankful we know at this stage Arthur’s condition which gives us the ability to be better prepared at his birth. But that preparing is hard. There are decisions we need to make so we can make the most of our time with him. Stillborn, lives a few minutes, lives a few hours, a few days and we take him home. Delivery options, hospital procedures, perinatal hospice. Outfits for burial and keepsakes. It is so hard and so sad to think about these things while he is still here with us, but we need to.

While most people have known me for my sports activities, I have always had a little artistic side in me as well. I love to craft and make things. Unlike some other areas of my life, it is one of the places where I have always been patient and pay attention to the details. I haven’t done much of this since Adele was born. People say that pregnant women get the desire to “nest” during this point in their pregnancy, making their home ready for their new addition. I responded to this nesting urge this week with a little craft for Arthur. I bought an anchor and some paints from Hobby Lobby, and during one of Adele’s naps, I crafted away. There was something very therapeutic about it for me. 

Why the anchor? Well, the name we chose for this blog is “Hold Fast Hope”. It’s a phrase from a verse in Hebrews: “we who have fled for refuge might have strong encouragement to hold fast to the hope set before us” (6:18). The following verse says this: “We have this [hope] as a sure and steadfast anchor for the soul, a hope that enters into the inner place beyond the curtain, where Jesus has gone as a forerunner on our behalf…” After receiving the news of Arthur’s condition, I have been clinging to this hope in a way that I haven’t since I first came to know of it. It has been this hope that has kept me from drowning in despair of the prospect of losing a child. It is this hope that I know will see us through whatever lies ahead for our family. And it is this hope that anchors our souls in heaven. And what is “this hope”? It is Jesus, who is the subject of this epistle to the Hebrews, whose atonement (Leviticus 16) covers us once and for all time.

Jesus. I have gotten to know Him well over the years, and in these couple of months the knowledge and experience of Him has gone deeper. What makes Him so special? And what makes Him someone I can pin my hopes on? He is the Son of God who lived a perfect life, yet died in our place so that those who would believe in and follow Him would escape the wrath of God that we deserve and enjoy life eternally with Him forever. He is our Redeemer. Yet he suffered much during his time on earth. It is this part of Jesus that has brought much comfort to me recently. He was “a man of sorrows and acquainted with grief” (Isaiah 53:3). He wept (John 11:35), tears of compassion for two women who had lost their brother. Approaching his crucifixion, he said to a few of his disciples, “My soul is very sorrowful, even to death” (Matthew 26:38) and then asked His Father to “let this cup pass from me” (Matthew 26:39). Some of the emotion I see in him are the very things I am feeling right now. This Jesus knows what we are going through, not just the knowledge of the events in our lives, but the experience of it. The pain I feel from within. The sorrow and the grief. He knows it. “For we do not have a high priest who is unable to sympathize with our weaknesses, but one who in every respect has been tempted as we are, yet without sin. Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in our time of need” (Hebrews 4:15-16). He is different than any other god I have encountered out there. This is a God worth following and worth setting my hope in.

The anchor. If there is a symbol that can mark Arthur’s life and his impact on mine, I would like it to be an anchor. He is teaching me so many lessons and helping my soul to truly be rooted in the hope of Christ. ⚓

More Gifts

This is Arthur’s lion. It’s from his grandmother, MommyK. I had wanted a stuffed animal for him, and with his middle name Neale meaning “Champion”, it felt like the perfect animal for him (and me).

This surprise came to my door this week from my teammates on the Davidson Volleyball team. While I haven’t seen many of them in years, this physical gift made it feel like they were huddled around me again. Pictures from back in the day, gift card for toys for Adele, chocolate, gift card for me. It was such a thoughtful gift.

Received this devotional book from a woman at our church we attended when we lived in Elon. It has given me some direction when I open my Bible and want to read something, but don’t know where to go. If you are suffering at all, I highly recommend it.

I am involved in a ministry at our church called “Merea”. In our group, once a month 6 older women and 6 of us younger women meet together. They prepare a small devotional for us and we spend the rest of our time learning a new skill (like making bread, using a sewing machine, and lots of other handy things I didn’t know how to do). These sweet women made this quilt , with Arthur’s name embroidered in the middle and the surrounding tiles verses of encouragement from each of them.

Snapshots of some lovin’ we’ve been getting. Thank you to all who have sent something, letter or gift or meal. It brings more comfort to this weary momma than you know.