Walking With You was created by Kelly of Sufficient Grace Ministries to help support those who have lost a child. Together we share our stories, helpful information, scriptures, encouraging words, prayer requests, and more. To join in on Walking With You please visit Kelly's blog. This 2nd week we are to share our experience after we heard the news that changed our lives.
This process was, in some ways, two-fold for us. I remember going in for a heartbeat check on Monday, April 21, 2008. I had been concerned about a sudden drop in my pregnancy symptoms, and with having had a missed miscarriage at 13 weeks just a few months prior, I wanted to make sure everything was okay.
When the nurse couldn't find Isaac's heartbeat on the doppler, they immediately sent me for an ultrasound, which is when Isaac's cystic hygroma and omphalocele were discovered. When the ultrasound tech and my OB were explaining what these were, I just felt so angry. I was already so hurt because of my miscarriage (which was a random chromosomal issue), and I just couldn't believe that there could be something wrong with this baby, too. We quickly headed over to a meternal-fetal medicine group to meet with a genetic counselor and to have a CVS performed. At that point, we were being told things like, "a 10% chance of survival" and "even then, we don't know what the baby;s quality of life would be." We waited a few days for the CVS results, and learned that Isaac's chromosomes were completely normal. We also learned that Isaac was a boy.
At this point, I really thought God was going to perform that miracle we had already started praying for... that it would be a long road of surgeries and medical intervention for Isaac, but that he would ultimately be okay.
A span of about 8 weeks passed, this time in sort of "limbo" where the severity of the cystic hygroma and omphalocele, among other things, had yet to be determined.
It was our June 17, 2008 visit to Children's National Medical Center that included several prenatal evaluations and consultations with carious specialists where we were told, "I am sorry... but your son's condition is fatal."
I really don't remember much about that day past hearing those words. I know we consulted with a genetic counselor, and I know I held back the tears long enough to make it to the car. Truthfully, I think it was shock more than anything else. My head was pounding, and my world felt like it had just unraveled. Several family members had asked me to call them after the appointments, and I am sure that what they heard when I called was more like a series of groans and sobs rather than an informative, coherent explanation.
By now, three different doctors had suggested terminating my pregnancy; that really wasn't an option for us. We know that the Lord created Isaac just as he was. We know that the Lord gives, and the Lord takes away. We know that the Lord is the giver of life, and that it's not our place to determine when Isaac's life would end.
And so the waiting began... and we didn't know how long we'd be waiting. We were told that Isaac could pass away any time in utero, that he could pass away at birth, or that he could be born and live a little while. Deep down we knew that God was capable of a fourth option: that Isaac could live. I think the uncertainty of it all was difficult... being excited for each ultrasound (and I had many!) and getting to see our little guy, but not knowing if his heart would still even be beating.
It was difficult to walk this road of maintaining a balance of an acknowledgement of Isaac's fatal diagnosis, but still having hope in what God could do. So, we decided to not set up a nursery or any of those things; we knew that if God did grant us that miracle we, and so many of you, had been praying for, then we'd be able to get a car seat, a bassinet, and a few things we needed in time. Instead, we wanted to focus our time on making memories while Isaac was still with us in the womb, and making the most of the time we did have.
So we took Isaac on hikes, to the pool, and to the ocean where I would jump waves with him and sit and watch the sun rise in the morning... telling him all about the colors and the clouds in the sky, the seagulls, and the crashing waves. We took him to a football game, and he seemed to get really excited when the drum line would play! As I wrote my daily letter to Isaac, I played music to him each morning, learning that he seemed to like songs with just a few instruments rather than many; and I drank lots of seltzer water, because not only did I like it, but it made Isaac kick and wiggle a lot... and I just loved knowing that he was so alive.
I wanted to walk this journey as a mom who was (and still is) proud of her son. While I wanted people to understand, I didn't want their pity. And most of all, I wanted to walk in a way that brought glory and honor to our Father in heaven.
As Isaac's birthday drew near, we spent a lot of time looking for the perfect blanket, the perfect outfit, and gathering all kinds of things to make memories with him that day. We knew that, barring a miracle, we only had one chance with it all... and we wanted it to be just right for him. It turned looking for "baby stuff" into something extraordinary for us.
We were, and continue to be, blessed by an absolutely incredible support system of people who have been the hands and feet of Jesus to us... both family and friends in real life, and other women who have courageously shared their stories so that those following a similar path might not feel so alone. I took comfort in connecting with women like that, in the support of our family and friends, and in God's word. I spent a lot of time reading through Job and numerous psalms... somehow feeling encouraged by the fact that it is okay to lay your anguish before God. Never before had I been in a circumstance where the very core of who I was had been shaken, and never before had I been so desperate. And God met me in every square inch of it.
The waiting is hard... especially when you don't really know what you're waiting for. We were told one thing by the doctors; yet we know we serve a God who is bigger than any diagnosis. Walking in that tension was a difficult thing, but how could I not pray on Isaac's behalf? How could I not hope for the miracle that God is capable of?
I know some of you right now may be in that "waiting" place... some have even e-mailed me and asked for my advice on that. The only thing I know to tell you is this: Do whatever you can to enjoy your pregnancy and the time you have with your child right now, and pray that God would give you the courage and strength to do it. He will.... because His grace is sufficient, and His power is made perfect in weakness.