Sadness welled up in me on Sunday. Tears come unexpectedly these days and I am usually unprepared and, of course, in public places. We were singing one of my favorite songs in church “In Christ Alone.” I was praising God, doing fine, and then this line came:
From life’s first cry to final death…
In came my heart screams. The deep sobs of sorrow from a Mommy who is having a baby with but a blink between life’s first cries and final death. How can I stand it? Times like those I think I cannot. So I sit. I sink into the pain a little and give myself time to simply be sad. But in time, every time, God has always dried up my tears with the truth of his presence through this all. I am gently and preciously reminded that He has brought me to this point and that He will not leave me now.
On the day we found out about Gideon‘s diagnosis we heard a fate from the doctors that seemed worse then death to us: “As his parents you can decide to end the pregnancy now. Babies with this diagnosis usually go to term, but don’t live more than minutes to hours. We will support you in either decision.”
Those words from the doctor came with the jolting reality that we had a decision to make. Fear and pain struck deep as we weighed and prayed through all the options and our best guesses at the consequences we thought might come with them. We made the only decision we thought we could make, we made an appointment for early induction December 3rd.
Tired from crying and praying we went to bed the night before the induction and my husband prayed these words at around 11:30pm “Lord we are afraid and full of sorrow beyond compare. Lord we trust you and desire your will in all things. Father if this not be the right decision for us, if your will contains a different story then please…stop us in our path. Divert us Lord, even in the middle of the night. Help us to somehow get rest. Amen.” Gradually and painfully we drifted off to sleep.
(Insert sound of iphone generic ring tone going off at 2:00am) I roll over. I see a number from Colorado I don’t recognize. I remember flippantly thinking in my barely awake state (no joke), “Oh, its God calling. I should answer it.”
Voice on the other line: “Hi Maria, my name is Jennifer. I received an email about you from Becky about your baby and I would love to share my story with you if you would be okay with that.”
My mind was thinking: “Who and who?? I don’t know either of those names.”
My voice, however, said: “Oh, um… sure.”
During the next hour my sweet angel named Jennifer poured out her story to me. In strength, and with no tears, Jennifer shared the story of her son James Asa and how he was born at 28 weeks with Potter’s Syndrome. She shared how she had three hours with her baby and how she would not trade any of those minutes for anything in the world. She took pictures, had foot mold and hand molds made, and their time together was so precious. Her story broke deep inside of me. Everything she spoke about was everything my mind had conjured up as being the most awful experience I could imagine. But, that was not at all the case. Through her, in her…in her story I began to see that God’s redemptive love and presence are real and powerful even in the most bleak of circumstances. God was with my sweet Jennifer on the day she lost her son, and I realized (at 2:30am) that He would be with us too. Regardless whether Gideon came into the world the next day or in 100 days…God would be there.
I continued to listen, with more peace than words can describe to you. I soaked it all up and cried as I literally heard the voice of God through her voice as she gently whispered to me, “Maria I believe that right now God wants you to know that He loves you, that He is with you, and that there is no right or wrong in this decision.”
I don’t think I spoke for that whole first hour. Jennifer didn’t know I was going in to be induced the next day. In fact Jennifer did not even know she was calling me at 2:00am. Poor thing, what I would have given to see her face when I finally told her what time it was. She thought I was two hours behind and I laughed out loud when she later told me that her husband informed her that would mean we lived in the ocean.
I didn’t know who Jennifer was and it was only after her explaining did I barely understand who Becky was. But what I did know is that I laid in bed that night and told God, for the first time, “Lord if you want me to carry Gideon past tomorrow, I can do it with you by my side.” You see I was afraid, so afraid of what life would be like knowing I was going to bring a child into the world who would die. I was even more terrified at the thought of watching him pass away. I also knew that every moment I had Gideon with me would be another moment I would fall more in love with him.
But after talking with Jennifer I wasn’t scared anymore, it didn’t immediately change my mind about our decision, but the fear had left me. I fell asleep again (briefly, we had to be up at 5:00am), ready and stronger for whatever would lie ahead.
We woke up the next morning and headed to the hospital. Although we were tired, we were now more confident than ever that God was with us. As the minutes ticked by in the hospital we prayed and prepared as best we could for what was to come. Jennifer’s story kept spinning in mind and I began to think of all the things I wanted to do that I didn’t get a chance to. What about plaster foot molds for Gideon…I hadn’t thought of that before? What about a special outfit and blanket? Even still, we were there and the decision had been made.
At around 1pm the doctor came in and I began to get concerned that no signs of labor had started. When I asked she said, “It could take up to three days.” Three days?! I calmly replied, “But I have a special date with my daughter in two days, do you think I will be able to make it??” Then she said these words, ones I will never forget…
“Well, we can just send you home if it doesn’t work.”
I can go home?? You would let me go home??? You see I have had three kids before and I know that as soon as they check you into that hospital you are in chains until that baby comes. God was afoot once more and as I sat there in my hospital bed I laid Gideon’s Fleece over my lap and prayed, “Lord, here is Gideon’s Fleece I am laying it at your feet. If by 5pm, the next time the doctor comes in, still no labor has started then I am taking it from you that it is time to go home.” The doctor had just administered another strong dose of the induction medicine, even still I drifted off to sleep knowing deep in my soul that we would be headed home soon.
By 8:00pm that evening I was home, snuggled in bed with my two oldest children.
When deep sadness comes, and oh does it come, stories like these give me strength to move on. They help me to remember that most assuredly God will be there when we need Him to be. He is a God of miracles and a God of the unseen. He is unpredictable and good and I know His miracles are not finished here.
Fast forward back to this week…
On Sunday morning I was too sad to keep singing. I got stuck on the one line of that song. But as I sit here now, peacefully reflecting back on God’s provision in this journey of ours, I read on and this is what it said next:
From life’s first cry to final breath
Jesus commands my destiny
No power of hell, no scheme of man
Can ever pluck me from His hand
‘Til He returns or calls me home
Here in the power of Christ I’ll stand
I believe wholeheartedly that the situation we are in is a testament of the power of hell in this world that we live in. Fallen and broken we live in the life praying that the hammer won’t fall on us. Please, just not us…not this. But as I come face to face with the power of death, I can stand knowing that I am His and that Gideon is HIS. In this I hope, in this I stand.
Gatewood Campbell says
Your faith and your ability to share it is extraordinary. Thank you for allowing us to go with you on this journey.
alison says
you are so strong. This is an amazing story. What a god-send this sweet Jennifer is. What a miracle. Thank you for sharing. xoxo
brittnie (A Joy Renewed) says
You sharing this is such a testament to your faith and woman of character that you are. Praising God for your sweet angel, Jennifer.
inallthingsrejoice says
I don’t know if this is of any interest to you, and I hope it is not taken poorly, but I assume your doctors have given your little one a death sentence essentially? That is what we were told initially, too: babies without kidneys can’t live, their lungs won’t develop without fluid, etc. At 20 weeks, my fluid was 5 cm, and I began seeing a team of specialists. The first doctor told us that the baby’s lungs were developed to just 18 weeks, and that by the next ultrasound (24 weeks) she expected the heart to consume the chest cavity since the low fluid couldn’t possibly allow further development. A series of doctor appointments with several different specialists has revealed the same diagnosis (probably no kidneys, though there’s no way of knowing for sure till it comes out–symptoms just all line up) but the lungs have kept growing somehow. At 29 weeks, the heart:chest cavity ratio was adding up to about 28 weeks (something we were told would not happen–I have had 0 cm of fluid since 24 weeks). They explained they don’t know why but on rare occasions the lungs keep growing. IF the lungs are developed enough at birth to process oxygen/carbon dioxide, the baby MIGHT live. It needs to be 5 lbs. to be put on dialysis according to the nephrologist at a local Children’s Hospital, so as long as we can get there, and as long as the lungs can support it, the baby could potentially live. The odds are definitely against us, and we are still preparing to bury our first child in the next month, but we have learned a lot about options that are available, if a doctor can be found who is willing to try. It is a really hard road and it’s not going to get any easier (even being given hope–sometimes hope is more devastating than having none), I just want to let you know that there might be options out there. My heart hurts for you because I know better than so many others what you’re going through (although I won’t know YOUR personal experience of it myself, of course). In the mean time, we are enjoying every minute and hour and day and week with our little one, and every minute we can hold it after birth. I hope you can find solace in loving your baby in the interim of not knowing what will happen (and being fairly certain, as we are, that the outcome will be very sad). I am sending much love your way.
trueworth says
Thank you for sharing your story and your heart. I would love to hear more about your precious little one and keep me updated how things go. It is good to know we are not alone in this journey!
inallthingsrejoice says
Absolutely! It has been a great comfort to me to read other women’s stories about their babies with bilateral renal agenesis and similar, usually fatal, issues. It helps to see that what I feel is similar to how others feel, and to see what choices they made and how they spent their time with their little ones. It’s been very comforting and encouraging to me, as strange as that might sound.