Sunday, April 19, 2009

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.

41 comments:

Christa @ Quintooples said...

I can't even pretend to know what I would do in your shoes. I think I do, but I don't.

I just want to offer you my support in prayer as you make decisions. I know my dear friend Kristy (http://www.babybolte.blogspot.com/) lost 2 sons to what is believed to a genetic condition.

She is delivering a HEALTHY baby girl this spring.

God IS so faithful. I will lift you up in prayer.

(((HUGS)))

Miche said...

I finished responding to your email and then ran over here to read your blog. In your email, I was like she didn't tell me how her appt. went :) Found it!

It sounds like you are confident in your decision and I can see why. He has a plan for all of us and we just have to trust in him.

I drive myself crazy some days thinking about trying again after all of this is over because I go through the "what if" scenario. What if it is something else next time? You can worry yourself silly with that thought process.

Our only choice really is to trust in His plan and HOPE for the best just like you said.

It's scary but you guys will get through it and we will all be here to support you!

Lynnette Kraft said...

Stacy,
We were told that we had a 1 in 4 chance of having another baby with anencephaly. Samuel was the first baby we had with a problem and the thought really frightened us, but God had taught us to just trust him.

Well, we've had 7 more babies and while 2 others had problems, none had anencepahly - and none of the problems were related (genetically), so...

It helps me when I consider that God isn't a God of statistics. There are no % chances with God. He is a God of plan, purpose and certainty...and there is such beautiful comfort in that.

I admire you and your husband for the decision you made and can see that God is teaching you so much about his love and the value of truly trusting and resting in Him.

Love,
Lynnette

Brendan and Brenna's Mom said...

How strange that you wrote this today, as I was just thinking about this very thing while grocery shopping this afternoon! ;)

I found myself thinking about TTC again, and being confident that nothing will go wrong with another baby. Then I caught myself doubting. I trusted God 100% with my little girl. I had no doubt she would be ok. And she died. How can I trust Him again?

The answer is I don't know. I just do.

I'm glad I'm not the only person who feels this way.

Angela said...

That was very well written and heartfelt. Thank you for sharing your feelings.

I totally know what you mean about 2% seeming like a large percentage. When our Benjamin was born with Down syndrome, we had less than 1% chance that he would, and when he did, the way I view percentages just kind of got skewed.

But you are so right. God is still good, and He is faithful.

King J's Queen said...

Stacy, I don't quite know how to offer support right now. Such a difficult decision, loaded with second guesses. I do know that I will continue to keep you in prayer while you travel this journey, no matter where it takes you.

Stephanie said...

That was written so beautifully!
You are so strong and courageous to talk about all this on here, and I admire you for that!
Trust Him!!

jenn said...

Stacy,
I think God led me here today (well, I KNOW He did) We lost our son, Harrison, at 37 weeks to no known cause. His heart just stopped. I searched everywhere, and with anyone I could think of to find an answer and found none. Then God gave us this pregnancy, and now I am 13 weeks along, but trusting Him is so hard. Our current doctor told us there is only One who knows...and I believe that. There is not a moment in the last ten weeks that I have not continuely given my prayer for trust up to God. Losing a child and then trusting God to have another child is beyond what I could ever imagined. It is harder and requires more faith than I used to deem possible. I know he is the same God as 8 months ago, He will always be the same God. I however, will never be the same, finding the good in that is okay.

I hope that someday we can blog about our babies here on earth!

banbear2 said...

It is so hard to be on the wrong side of the percentages. We had only a 3% chance of losing Raymond but it happened. now that we have Olivia I worry about SIDS constantly. Brad tells me SIDS happens 1% of the time.....I hate to remind him that we've already been on the wrong side of the 3%. Hang in there and know that you are not alone.

nikki wood said...

I know EXACTLY how you feel. We too just got back our genetic testing, and from what they can tell there was nothing genetically wrong. BUT that is just with the tests they can do. Is there a chance of it happening again? Maybe, but there are no tests that can tell us for sure. Just 2 nights ago I gave the decision over to God whether we have another baby or not. It was very hard for me to trust that He will bring us through to the destiny that we are meant. And to trust so fully is hard but I AM TRYING! I hope He brings us both to happy, healthy babies one day soon.

Brooke said...

Wow you are amazing. I havent commented in a while but this post touched me so much. I know that despite wanting to trust him it can be so hard. Our battle with Infertility has really brought me to those momments of wanting to trust but being so wounded that it seems more painfull to trust him then to remain numb and closed off to the possibilitys. I am so amazed at you and your husbands faith and continued seeking of Gods will. I pray that you will be blessed even more and that you will continue to have peace in the fact that on the other side of eternity you will be able to spend more time then you had with your sweet little boy.

Amy Mott said...

Stacy,
I wish I had some beautiful words of wisdom and advice, but I don't. My heart hurts for you in this storm of life but knowing that you are putting your full faith in Him gives me hope that you will one day see the bright sun shine again.
With Love,
Amy

Sonya said...

Our God is the same yesterday, today and tomorrow. God has something BIG planned for you Stacy, just trust and believe in him.

Kayla said...

I've been following your blog since our miscarriage in October and you have provided me with so much inspiration, comfort and insight. We are dealing with some tough situations right now and I just wanted to say that your post speaks to me in a way that I am so thankful for. I want to trust too.

Kelly @ The Beauty of Sufficient Grace said...

Praying for you as you place your trust in Him for the next step on your journey, sweet friend. I recently wrote about my own Thomas and learning about believing God without seeing. That's what "my" Thomas' life taught me. The Lord spoke through his life in so many ways, even when I couldn't see or feel Him. Angie's words really spoke to me as well...My Jesus is the same... He IS the same...no matter what we face. And...no matter what the future holds...He will carry you, sweet Stacy. He will carry you.

Much Love and Prayers,
Kelly

Devon said...

i'm right there with you dear friend...

i'm glad you got to sit down and get some answers and some direction. and i'm even more encouraged that those doctors called your sweet boy by his name...i have yet to have anyone do that for me.

praying for you and spencer as you decide when or if or how to take that leap of faith...

Amber said...

Stacy...thank you so much for your words today. I had chills the entire time I was reading it. I too am struggling greatly with trusting God during a difficult situation involving my child. It is so easy to trust Him when things go MY way...I need to work on when they don't. Thanks for being a great example of this.

Blessings

Chelsea Pang said...

Yes! Many times our faith has to be a choice, not a feeling. The Holy Spirit can fill us with the feeling after we turn to Him. I am exactly where you are at...it is a daily decision to believe His will is always good, even if another outcome I don't want happens, I can trust Him because the end result is always the same. I'm going to Heaven after all of this is done! And according to Him, it already is done. I pray for your heart to be filled with the faith you have chosen.

Tammy On the Go said...

powerful Stacie...to God be the glory.

boltefamily said...

Praying for trust to overcome the fear. As I read your words I remember being in a VERY similar situation myself only my numbers were a 25% chance of recurrance. Praying for you as you listen and obey. If you ever need to chat let me know...though I cannot possibly know your exact feelings and thoughs, I do understand where you are coming from.

Kellye, Chad, Hayden, and Sebastian said...

Stacy...I can't even tell you how much you have inspired me. I like to think that if I were placed in your shoes of suffering one of the greatest tragedies a woman can face, that I'd continue to walk as strongly in my faith as I do today...but I don't know if I could...that is until I read your blog and see how you walk everyday. You are SUCH an inspiration as a woman but also as a person of faith. Thank you so much for being brave enough to put this all out there for everyone. I continue to remember you and your family in my prayers and sweet, sweet Isaac. God bless you! You have been chosen Stacy and you are using the talents that God has blessed you with to inspire the nations. Thank you....so many would have turned away and yet you walk onward. Thank you.

Laura said...

We have not walked an inch in your shoes Stacy - but I will tell you that during both of our pregnancies, we did not have any of the testing performed....because just as you said, we would give our child EVERY chance at life, no matter what.

Blessings to you

Carly K. said...

Stacy,

I'm thinking of you and praying for you. I am glad that you were able to talk to the specialists. Seems like you and Spencer are on the same page and that is what counts. You are wonderful parents to sweet Isaac.

The percentages can drive you nutty. I had a 3% chance of getting preeclampsia and my only risk factor was first time pregnancy. I have a 33% chance of getting it again in subsequent pregnancies. Then all the different percentages w/ Will...
I think we just have to trust our own hearts and faith.

I am praying for you and am here for you.

Bluebird said...

I'm proud of you.

We have a 5% chance of another baby having the same deadly heart defect that our little girl did (which was not what ultimately caused her death, but it likely would have). I understand wanting to gather all the information you can . . . but then putting it all aside and just moving forward. Knowledge is good - I crave knowledge - but in the end it doesn't make a difference.

Cynthia said...

Thinking of you and praying. Trust is hard and it is okay to wonder if you are making the right decision. God loves you no matter what.

Ruth said...

Wow, you have such great faith, you encourage me. I know that I have to trust and have faith also but it is so hard when things don't go how you thought that they would, "when the scared is torn" and when there is so sudden miracle or healing. . .I truly appreciate your perspective and I love how you always point and incline my heart toward God. Thank-you so much for sharing your Isaac and walk. God bless you and give you His peace. Much love-

Angie said...

I lost my daughter last September at 16 weeks gestation and I just lost my son on the 28 March at 16 weeks gestation. The search for answers is consuming me... I have read and read there is so much information but still there are no answers or guarantees. With God statistics mean nothing. My son had all the stats on his side and he still didn't make it. I totally agree with your decision - trust in Him for even with all the stats God still has his perfect plan in place. Just trust Him... I'm trying to everyday... its just so hard when you feel so powerless in a situation which means EVERYTHING.

Foreverloves said...

I admire the committment to your choice. For us, we did choose to have extensive testing and second/third/fourth opinions done. I don't believe I could have faced another pregnancy without that knowledge. We still knew the risks we were facing, and had we suffered with a birth defect, we never would have terminated. But we would have wanted to know as much as possible so we could prepare as much as we could. Without those doctor visits and without the hypervigilance of my specialists, I know I could not have faced this pregnancy.

It is very brave to cast statistics to the wind and choose to trust in the way you are. I wish you much luck and peace.

Anne said...

Stacy, You are such an amazing inspiration. I have read your blog and commented that before, but this post challenges me so much. I pray that I will one day have the kind of trust in the Lord that you have... You have amazing faith. I hope that if I am ever faced with situations that you have faced that I would handle it as well as you... You and Spencer continue to be in my prayers.

Jenn said...

Our God does have a plan for us, no matter what the doctors tests say! It's so wonderful that you have the faith and trust in His ways.

Vivian said...

Stacy, I don't have any words of wisdom or really even of comfort, but I wanted to let you know that there are people out there who are still praying for your continued peace and healing. You faith continued to amaze me and I find myself humbled when I think my life is falling apart over the smallest of things. Thank you for continuing to share your journey. You are a blessing and an inspiration!!

Rebecca Louise. said...

Outstanding post! I agree in your decisoon...whatever the answer it really doesn't answer anything. xxx.

Laura said...

Thinking of you...so proud of you and the way your are trusting. Even in the midst of the heartache.

xoxo

~ shi ~ said...

Stacy,

May God feel you with Joy and Hope and Peace...Blessing shi~

Misty Rice-Baniewicz said...

Just swinging by to say that I was thinking of you today girl. I hope you had a good weekend.

Hugs

Ki said...

http://prayformatt.blogspot.com/

Stacy, I can't begin to know what you're going through, but the person above does.

Sweet Isaac, so beautiful. Much love.

FSD said...

Wow! This was powerful! Although I'm a believer, you really do challenge me through your Godly example. Thanks for being so real! Praying for you...

Tim and Jennifer said...

all i can offer are my prayers for you as you walk down these roads. my chances were 1 in 1,000 of molar tissue taking over me and the baby again. it did not come back. if and when you do decide to try again....dont search ANYTHING on the internet (it will just drive you crazy) and stay away from sad blogs. i just know you are going to have a healthy baby.

Seraphim said...

I had to go away and process what you had written before I could comment. I feel foolish even trying to do so as I have never even had to take a step in your shoes.
What I love about you is that you are honest in your struggles to trust God and the fact, that ultimately, you choose to do so.
I've been following you lately on twitter too. You remind me how much I DON"T miss teaching!
Keeping you in my thoughts and prayers. xxx

The Knight Family said...

Still thinking about you & praying for you too!
~Cindy from tennessee

Kelly @ The Beauty of Sufficient Grace said...

This is only going to make sense to you and I...but, in response to your comment on my blog...most of the time I experience the golf ball skidding across the grass, too. Sadly, much more often than soaring through the air. Stick with it...and trust me...when it soars just once, you will be hooked! I'm praying the Lord blesses the upcoming golf outing in Isaac's memory. Our ministry is planning an outing as a fundraiser this summer (for Sufficient Grace). We had a golf outing last year and it went pretty well. Praying the Lord's provision this year too!

Love to you,
Kelly