Do You Trust Me?

This past week, Spencer and I met with the genetic counselor and the head geneticist at Children's National Medical Center to review the pathology report from my miscarriage and the death summary from the day Isaac was born. While I absolutely believe that we have been given great advice from the neonatologist who cared for Isaac (who happens to have a background in genetics) and the other genetic counselor with whom we had met, I still wanted the chance to sit down and speak with a geneticist... especially now that it's a while later and my head is slightly more clear.

The appointment went very well... both the genetic counselor and geneticist were very kind in how they discussed the situation, and were very considerate in making sure that they called Isaac by name. They were knowledgeable, and for the first time, presented options for additional genetic testing. Thus far, the other doctors either haven't recommended it, or simply said there was no other testing to do.

The folks at Children's presented two options to us: to have a microarray done, and/or have screening done for Beckwith-Wiedemann Syndrome. The microarray would look for microadditions or microdeletions on each chromosome, while the Beckwith-Wiedemann screening would look specifically at chromosome 11 to see if it presented the changes concurrent with a Beckwith-Wiedemann diagnosis. Both the genetic counselor and the geneticist do not believe that Isaac had Beckwoth-Weidemann Syndrome, and they also concur with the neonatologist's findings that there was not any genetic syndrome associated with Isaac's condition based on the findings of the CVS I had done at 12 weeks, and based on how Isaac looked (which was pretty stinkin' cute!) at birth.

Believe me... this additional screening is tempting. It's tempting because it could tell us why things happened with Isaac. It could provide an answer.

But it could not.

We talked a lot about recurrence risk. Essentially, we've been told that there's a 2-3% chance of recurrence based on what we currently know about Isaac. If the microarray testing came back positive, it could raise that percentage to about 5-6%. I know that to most people, those numbers sound small; but when your son was diagnosed with a condition that occurs in 1/10,000 live births... well, even 2% seems huge.

We also spoke with them about how this information would be helpful. We were told that it could provide a reason for what happened with Isaac, though both the geneticist and genetic counselor believed that the results for both tests would come back negative. We were also told that, if something did come back positive, it would provide information about what may need to be monitored in any future pregnancies more closely "so that we could then make decisions early enough if something was wrong." For us, there is no decision to make. Even if we were faced with the same situation again, we would give that child every chance at life.

So, Spencer and I did some talking, a lot of thinking and praying, and some more talking... and here's what we decided: not to go through with any of it.

There is such a struggle and a tension within me about it. Part of me wants the reassurance that the recurrence risk would really only be 2-3%; yet at the same time, part of me wishes that we would have an answer for what happened. Part of me wants to put my trust and my hope in the statistics, but I know that's not were hope is found.

Hope is found in Jesus.

The past few days, I've really just been feeling like God has been asking me,

"Stacy, do you trust Me?"

And I don't always know how to answer.

"Sure, God... I trust you with our finances. You've proven yourself so faithful in that way. I trust you to provide for our practical needs, because you always have. But trust you when it comes to children? I don't know..."

But I want the answer to be "YES!!" for any of those things... even my children.

The trouble is, it's a hard thing to trust the One who didn't answer the prayer for a miracle... who instead, allowed your son to die.

I know, though, that He alone is worthy of my trust...for everything. Not just the parts of my life where I have seen his faithfulness or the parts of my life that are going well. He is worthy of my trust for ALL of it.

Why?

Because of His character... because He is trustworthy, regardless of my circumstances.

So this is why we decided not to go through with any of the genetic testing. Truthfully, even if the results came back positive, it wouldn't move us into a place where we'd be uncomfortable trying again. Moreover, I want to trust God with this. I'll admit it; it scares me to pieces sometimes.

But I want to trust Him; and I have learned that often, action precedes feeling. Sometimes, a person just needs to live and act in a way, and the feeling follows. I am learning a hole new kind of trust. Truth be known, I am often so much like Thomas... needing to see, and then being willing to believe. But it is clear to me that right now, there is a choice: to trust in God's decision for Isaac because of who He is and even if I don't see the reason or understand why, or run around trying to answer the "why" question and then trusting Him. There's also the choice to trust God with His plans for our family and the possibility of future children, again because of who He is despite what He has allowed to happen, or to put all of my faith and hope in medicine and statistics about recurrence risk.

I know I talk about Angie Smith on here a lot, but I have just learned so much from her Godly example. In an interview I saw with her and her husband Todd, she spoke about the day when they found out about their daughter Audrey's diagnosis. While sitting in the ultrasound room, she said to Todd, "My Jesus is the same before we ever walked into this room."

And my Jesus is the same before we ever started down this path of grief, joined the "bereaved parents club," or lost our sweet Isaac.

And that's why I want to trust Him. It doesn't mean it's easy, and it doesn't mean that it comes without fear... but I want to trust Him in spite of those things.