The Bittersweet

Over the last couple days, I've really been thinking about how this whole journey with Carter has such high highs and low lows. Let me tell you what I mean:

Bitter: Knowing Carter will likely never play trucks with his older brother or discover music, sports, or art. It's really hard for us to think of all the things we imagined doing with Carter and Cohen together. We were so excited for our kids to be so close in age and become good playmates.

Sweet: Being able to appreciate all the little nuances of pregnancy and bonding with Carter now the only way we know how. We spend a lot more time talking to him, touching my belly, responding to his movements, and just trying to include him into our everyday adventures (everything from watching TV to enjoying the worship music at church). I tell him about his daddy and older brother, but most of all, we tell Carter how much we love him and the blessing that he is.

Bitter: Having to tell people that our little boy's prognosis from the doctors is terminal. We don't tell every Joe we meet on the street, but even then, we have to give a lot of grace to strangers and their typical pregnancy questions: "What are you having?" "When are you due?" "Is this your first?" We don't spill everything in these situations, but kindly answer their questions: "A boy. His name is Carter Benjamin, and he's our second son. The due date is early March." Behind our short, simple answers lies the sting of reality.

Sweet: One of the most amazing things has been how real our relationship with Jesus has been since finding out about Carter's condition. We don't mean to come across as fanatics, and we hope none of our friends think that our talking about God's peace and grace so often is an effort to proselytize. The fact of the matter is that we talk about Jesus and ask for prayer in all this because it truly is the only way we know how to survive. It's only through Jesus that we find peace in the midst of such crappy circumstances. It's only through Jesus that we can get out of bed every day knowing what is to come. We've certainly asked Him our questions (and told Him what we think), but we cling to Him nonetheless. I really wish I could describe how real God has been to us.

Sweet: I want to end on another sweet note. This week has been particularly tough for us as I began to show some early labor signs. No major contractions or anything yet, but these early signs do indicate that things may be happening sooner than we had planned. It's been a tough reality to handle. We want more time with our Carter, but we are also really excited to meet him. However, the sweetness in all this is how we've seen God gently care for us through other people. We've had family members allow Ben and myself some much-needed time alone. We've had unexpected financial gifts given to us, knowing of the medical and burial/funeral expenses we have ahead. Numerous people have brought us delicious meals and even offered to watch Cohen when we need some "time off." So in the midst of such fear and uncertainty, we are gently being reminded that God is taking care of us. Even an early delivery may be a blessing if it means being able to have time with Carter while he's still alive.

All this to say that although the bitter can often outweigh the sweet, we are not without some sweet, sweet moments with Carter, with God, with our family, and with our extended church family and friends. We know this situation is bleak and our hearts grieve daily, but we know God is faithful and He WILL redeem this pain. The sweet WILL outweigh the bitter at some point.

Jan. 20 Doctor Visit

Yesterday we met with our new doctor down at the IU Med Center, and ever since, I've been trying to find the words to tell you about the appointment.

In some ways, it was very routine. My belly was measured, and we listened to Carter's heart beat at 130 bpm. Every time the doctor goes to check the heart, I hold my breath. Although I feel him move inside me, the reality that he could yet be stillborn lingers in the room. I depend on that heart beat right now, because I so badly want to meet my baby boy alive, even it's only for an hour.

His heart beat normally yesterday. I love that little heart beat.

Our new doctor was quite different from ours here in town, but I think we will like her. One thing I definitely appreciated about her was her honesty. She did not try to mince words or sugar coat the truth of what we might face during the next several weeks and at Carter's birth. Knowing the facts seems to help.

As of right now, we have decided not to induce. I know this goes against what we originally thought, but our doctor seemed to think that (all things considered) allowing nature to work out the due date would be best. We will continue to assess this decision, though, as the weeks go on (I'm currently 33 weeks pregnant).

To be honest, this decision was a bit of a relief to Ben and myself. I was growing more and more uneasy at the thought of choosing a day to meet and say goodbye to Carter. I don't mean to sound calloused, but it almost felt choosing like a death sentence. I wasn't ready to make that choice. So, as it stands, we are going to continue carrying to term and allow my body to tell me when Carter will arrive. For now, I feel settled in that decision, although continued prayer that God would give us wisdom in these decisions would be helpful. These are decisions we just never considered for ourselves and trying to find "what's right" isn't easy.

We continue to cling to all the precious moments we have with Carter. Here's what we know about our son: We know he continues to grow, but is likely a bit smaller than most babies at his stage (probably about 3 weeks behind on the growth charts). He moves around a lot, especially when his older brother Cohen bumps into him or comes to "inspect" Mommy's funny belly button. One very cool thing is how Carter seems to respond to Ben's touch and his voice. I can't tell you how many times Carter has been somewhat quiet, only to have Ben put his hand on my belly or talk to him that elicits more movement than I felt all day. Ben definitely knows how to rile up his boys, and we both find a lot of joy in this.

I'm not exactly sure how to wrap up this post only to thank you for your prayers during our doctor visit yesterday and by continuing to thank God for our Carter Benjamin. Please pray we will continue to make the most of this time we have with him.

Broken

It continues to throw me when something so simple can throw me for an emotional loop. Today, I was driving back home from dropping Ben off at the church when a Lifehouse song "Broken" came on the radio. I've heard this song a bazillion times, but today the lyrics hit me like a brick wall.

"Broken" by Lifehouse

The broken clock is a comfort, it helps me sleep tonight
Maybe it can stop tomorrow from stealing all my time
I am here still waiting though i still have my doubts
I am damaged at best, like you've already figured out

I'm falling apart, I'm barely breathing
With a broken heart that's still beating
In the pain is there is healing
In your name I find meaning
So I'm holdin' on, I'm holdin' on, I'm holdin' on
I'm barely holdin' on to you

The broken locks were a warning you got inside my head
I tried my best to be guarded, I'm an open book instead
I still see your reflection inside of my eyes
That are looking for a purpose, they're still looking for life

I'm falling apart, I'm barely breathing
with a broken heart that's still beating
In the pain is there is healing
In your name I find meaning
So I'm holdin' on, I'm holdin' on, I'm holdin' on
I'm barely holdin' on to you

I'm hangin' on another day
Just to see what you will throw my way
And I'm hanging on to the words you say
You said that I will, I'll be ok

The broken lights on the freeway left me here alone
I may have lost my way now, haven't forgotten my way home

I'm falling apart, I'm barely breathing
with a broken heart that's still beating
In the pain there is healing
In your name I find meaning
So I'm holdin' on, I'm holdin' on, I'm holdin' on
I'm barely holdin' on to you

So, there I was, sitting in my car with Cohen in the backseat (thankfully we were parked in our garage at this point), and I just lost it. I let the tears roll down my face as I let the reality of my own brokenness over Carter sweep over me. As the song says, "In the pain there is healing." I just sat there crying, knowing I had to let myself just feel the intensity of that moment. I needed to cry. I need to feel that pain. I needed to mourn the doctor's prediction of Carter's short, sweet life.

Of course, poor Cohen in the backseat didn't have a clue what was going on, but he quietly sat there as I finished the song. Sometimes God just knows when I need to unravel, and I am so grateful for things like music that help bring the brokenness out of me. The last thing I want to do is bury it and allow it to make my soul bitter. Letting it out lets God in.

And over time, even this afternoon as I was able to have some quiet moments during Cohen's nap time, my heart heals a little. I know more brokenness is in the works, but healing along the way has got to be so much easier than ripping off a bandage to a gaping wound later on. It just has to be.

1/18/11 Update

We have been a little M.I.A. this last week in keeping everyone in the loop due to Cohen and me both getting various illnesses. I think we're finally on the up and up, however. You never appreciate good health quite as much as when you start getting over a sickness. So here are a few tidbits to bring you up to speed on how we're doing. Sorry it's pretty random.

Physically:

Carter continues to move around a lot every day. While there's still a chance that he could be stillborn, my prayer continues to be that we get at least a few hours of precious time with him. I know God can do a lot more than this, but that's about all the "hoping" I can muster up right about now. We definitely are depending upon the faith and prayers of others to pray for more. (So please...keep praying for miracles!)

I (Sarah) am increasingly more tired and have been struggling with quite a bit of back pain, which is just normal pregnancy stuff. However, prayers for comfort and for sleep are much appreciated.

Emotionally:

Our sleepless and sickness-filled week last week left both me and Ben a little raw emotionally. I think we have both been feeling like our time with Carter is slipping by, and as his due date gets closer, we have really mixed emotions. On one hand, I cannot wait to meet the little guy who continues to daily move inside me. I want to hold him and love on him like you can only do after a child is born. However, I know that his birth also means saying goodbye. And that is what we do not feel prepared to handle. God will give us grace and strength in those moments, we are sure. He has been here so far and will continue to be. Not knowing what lies ahead, we just have to depend on Him.

Doctor Update:

Jan. 20: Dr. Appt - Many of you may know that we have decided to deliver Carter at the IU Hospital in downtown Indy. This week, we begin our regular appointments with one of the neonatal specialists there. This doctor is new to us, but we have heard good things about her. Please pray that we can begin to feel comfortable with the staff in Indy. We will also probably meet with the perinatal hospice worker with whom we've been in contact. Between now and when we deliver Carter (date still to be determined), we have a lot of details to work out. We hope to share some of our plans with you at some point.

More Thanks:

Thanks again to everyone for your support and prayers. We continue to be blessed by all our friends, family members, and even complete strangers who are encouraging us, praying for us, and thinking of Carter daily. We are amazed not only be the number of people who care, but also how MUCH they care. Thank you.

Scared to Intrude?

We just want to reiterate that you can feel free to talk to us and ask questions. We aren't looking for more pity or anything, but I know several people who have said that they didn't know whether to say something to us or stay away. So, I just wanted to be forthright with where we stand. I know words don't always come easy (they don't for us either), but talking is much easier for us than knowing how to deal with avoidance. You are not intruding. Even a simple "We're sorry" or "I'm praying for you" blesses us. Talking about the facts of what's going on is generally therapeutic. We don't expect everyone to say something, but want you to feel that you can.

Reality

Yesterday was a particularly challenging day in the Westfall home. Normally, I'm not inclined to give you a play by play of what happens at our house, but yesterday was just too much.

Cohen had been fighting off a virus along with an ear infection the last few days, which produced a pretty cranky toddler. Combined with a few sleep-deprived nights (courtesy of Cohen's fever and ear infection), Ben and I were probably not in the best of moods or mindsets. It was one of those days in which I probably would have taken a friend up on the offer to hang out with Cohen, but I didn't want to pass around anything contagious he might have had.

So, we just had to face reality as it came to us. Even though we were tired, making me more hormonal and emotional, we had to keep on being parents. That was the kind of day in which I needed God's grace. Cohen is such a blessing, but sometimes being a parent can be exhausting even on the best of days. I really had to muster up all the determination I had to make it through.

And let me say...the day at least ended on a good note. Well, in a weird way. I was getting Cohen ready for bed, which included his ritual bath time. He was playing by himself nicely while I talked on the phone with my brother, Michael. Suddenly, I looked down at Cohen just in time to see an odd expression on his face followed by a surprise. I quickly yelled into the phone, "Cohen just pooped in the tub, I gotta go" and then grabbed Cohen out of the water. Then, in trying to clean up the mess quickly, I thought I heard my scooping bucket leaking. Not seeing any leaks, but still hearing the noise, I look over at Cohen who was peeing on the floor.

I burst out laughing. Cohen, who had previously had an "uh-oh" expression on his face, began to laugh with me, and I just had to give him a huge hug. Despite all our grievances with each other that day, we smiled, took care of cleaning up him and the tub, and enjoyed a peaceful remainder of our evening.

No matter how challenging, I thank God for these moments. I thank God for giving me Cohen who keeps me grounded in reality, not wallowing in self-pity. He also gives us lots of laughs. Laughing really is good medicine. We continue to learn that we need to allow ourselves time and permission to experience every range of emotion; we need both the highs and the lows.

How you can be praying...

While I'm sure our prayer needs will change from time to time, here are some specific ways in which Ben, Cohen, Carter, & I ask for your prayers:

• Strength for each day. Being emotionally and physically worn out seem to come hand in hand, especially when we are still chasing after a toddler and trying to keep up with other areas of life.
• Grace for ourselves & as we interact with others. Ben and I have a phrase that we keep saying to each other - "Stop 'shoulding' yourself." In other words, stop using the word should in reference to how we feel, think, or react. There's no guidebook on how to react in this situation, and we need to exercise a little grace with ourselves. Also, we need grace to extend to others, especially when we have to tell them about Carter or when our emotions are raw. We are so grateful for the support of others that we cannot fault them if they do not know exactly what to say or do around us. I'm not sure we would know either, if we were on the other end.
• Wisdom. We can't stop parenting Cohen just because we are in a difficult situation. We need parenting wisdom to keep at it with our 16-month-old. Plus, we are making some pretty major decisions for our family and for Carter after he is born. There are a lot of things to think about, and we want to make sure these decisions bring honor to God and to Carter.
• Miracles. While I honestly have a hard time allowing myself to hope, I know I would be overlooking the power of the God I love if I did not at least ask for Carter's complete healing. We aren't naive to Carter's condition, but how can we not ask? Perhaps you all have a bit more faith than I do at this point and can ask better than I can for such a miracle. But in the same vein, please also pray that we would find peace & comfort in knowing that God may not redeem this situation like we would want, but that He will redeem it.

These are the major prayer concerns we face on a daily basis. Some days more than others, as we allow ourselves to experience the pains and joys that come each day. Believe it or not, we actually do have some relatively "normal" days, and this is good. God uses Cohen a lot to help keep us grounded.

So thank you for your continued prayers. I know God may give you even more wisdom to know how to pray, and I am so grateful for it.

Carter's birth defect: Renal agenesis

I am not a medical person. However, both Ben and I have found that talking factually about Carter's lack of kidneys as well as what we can expect during and after labor/delivery has been helpful. While we cannot be fully prepared for Carter's delivery and the days to follow, knowing some of these medical things have given us some strength to face what's ahead. However, I'd be remiss to think Ben and I were the only ones with questions about Carter's medical state.

While I can explain in part Carter's condition - called renal agenesis - I think I better let the experts do the bulk of the work for you. Hopefully this link about renal agenesis can clear up some questions people have.

This information comes from the March of Dimes website and seems to be pretty straightforward. Hope it helps.

Why blog?

I was initially hesitant to start a blog about Carter and our family's journey. I didn't want to commercialize on our pain or dishonor Carter's life in some way by being just another blog out there. However, after some encouragement from family, as well as the realization of how hard it can be sometimes to retell things over and over, I gave in.

We are overwhelmed by the number of people who care about Carter and our family. Overwhelmed in a good way, I might add. The least we can do is keep people up to date on what's going on, how God is working, and how others can be praying. Plus, I don't want people to miss out on the current joys we experience as Carter is still quite living and active inside me (Sarah).

As difficult as this is and will continue to be, we also have to draw attention to God's faithfulness. Carter is so clearly God's child. And as much pain as it causes us to give him up, the grace, strength, and love we have experienced so far has been more than we ever expected of God. It really is bittersweet to feel such pain on one hand and such love from Another.

God is good, all the time.

Thank You

To everyone who has left us a Facebook message, delivered a meal, said a prayer, given us a hug, or shown us love in some way...

Thank you.

While we may not reply to every note or message we receive, we need your support and covet your prayers. God is hearing them and has been faithful in helping us survive each day. Know that we have been comforted and overwhelmed (in a good way) by your love.