Ryan and I were married in September of 2000. Then, Thanksgiving that year, we found out we were pregnant. I was so excited. Our life together was, in my mind, as it should be.
At our 5th month ultrasound we found out we were having a girl, Kylie Grace, and that she had some kidney issues. We soon learned that her condition was called Polycystic Kidney Disease (PKD), a genetic disorder. After seeing doctors that specialize in this, we were told to, “expect the worst! Nothing good will be happening here.” I remember trying so hard not to cry while the doctor said that. But it was impossible.The tears came down like a river. We were told there is a 1 in 4 chance of PKD occurring with each pregnancy we might have. As in...“warning, this can happen again.”
These specialists told me time and time again that Kylie would not make it to birth. As my pregnancy went on, we constantly prayed and had so many around us praying for healing. One night at church I went to the altar. At this point in my pregnancy the baby wasn’t moving much due to lack of fluid around her. The speaker that evening laid his hands on my belly and prayed. Kylie began moving so much while being prayed over – I mean she literally DANCED! I was convinced that was her healing! I was calm and felt confident. This baby was NOT dying!
I went into labor 5 weeks early and was sent to University of Washington Hospital in Seattle to have an emergency C-section. During this, I was in and out of consciousness and it all happened so fast. Kylie was born on June 30th. The only thing I remember about the delivery is that she didn’t cry when she was born. They took her immediately to the NICU where she was hooked up to many machines.
By the second day, she seemed to start struggling, and Ryan and I prayed with her and said, “if it is time to go, then we would be okay.” She died in my arms soon after that. This is when God provided peace that I can’t even explain. This love that we felt and a covering we had during this saddest moment of saying goodbye is beyond words.
Leaving the hospital without Kylie was one of the hardest moments of my life. When a baby dies, the hospital gives you a box of things that your baby used while there. I left with a box. Not a baby. The next goal of my life was to not lose my faith, my joy or myself. I was sad. I cried a lot. As life went on, and I would be around people who didn’t know my situation, the hardest question I was asked was, “how many children do you have?” That seems like such a simple question, right? It wasn’t for me.
But, I always knew God was good. The song, ‘Praise You in This Storm,’ was my go-to. I was in the middle of my storm and I knew praise and worship would be what I needed.
Within the next few years, we had our son, Khale, and daughter, Taylor. I felt confident in these pregnancies and was overjoyed at being a mom. Then, I found out we were pregnant again! I was so excited, however, I felt so much anxiety. I went for my first doctor’s appointment and while there, I overheard a conversation between a nurse and the hospital speaking about a baby that had just passed away after birth. Right then, I spoke out to God — but differently than I had in the past. I gave Him the rules we would be playing by. I told Him, “if this happens to my baby, You do it now — or not at all. If this baby is still alive at the end of this appointment, You do not get to take my baby later”... as if God would ever succumb to ultimatums.
From that point, I was scared and not sure why. At 14-weeks I was given an ultrasound and the results were bad. My doctor cried with me, telling me, “it has happened again; diagnosis PKD.” I was angry! I had people telling me, “God will only give you what you can handle.” Those words kept rushing through my head...why does God think I can handle this? I can’t!
I sat in my anger briefly but decided, again, to praise through the storm. Over the next months the ultrasounds seemed to get worse with the baby’s health. But, again, that amazing peace we had experienced earlier was put on us and we felt calm. Praying for a miracle was a necessity, but we also prayed a lot for the comfort of my heart.
Grace Taylor was born on January 5th. 7 weeks early. So many God things happened with her birth. It had been arranged for a certain team of doctors to help with the delivery, scheduled on a date in February where they would all be available together. However, I went into labor in January. As we were admitted to the hospital and taken to a room, my doctor came in and said he just couldn’t believe it ... the whole team happened to be there that particular night. Everything was exactly how we would have wanted it. Another C-section. Grace was born, and they immediately sat me up and placed her in my arms. We were moved to another room where Ryan and I were able to just love on her!
Grace died within an hour. My heart was broken again and the goodbye was so hard. The empty-arm feeling was even stronger this time. But through it all, I realized that when you choose to have God with you, your heart may be broken — but at the same time, you can still feel joy and peace! It is so incredible.
Consider it pure joy whenever you face trials.
James 1:2
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