Hope

June 15, 2022

Today we had our second appointment with MFM after a month of grief and pain and processing. Abby's heartbeat was 123 beats per minute and she's measuring in the 3rd percentile for growth. I didn't love Dr. F or whatever her name is.* I was upset most of the time because they wanted to do an ultrasound and consult but we'd already done that. It just didn't make sense - even the ultrasound tech admitted she didn't know why we'd gotten scheduled for another ultrasound. And we have $700+ that we owe for May's ultrasounds.

I think it was a communication issue. At our confirmation appointment last month they'd asked me if I wanted to transfer my care to them or stay with Dr. K. I told them I had no idea yet. I talked to Dr. K about it and she told me she'd be honored to continue to care for us but that she thought transferring would be the easiest on me - both logistically and emotionally. So I think someone set up this appointment thinking it was our first one all over again.

From here on though they won't do any more ultrasounds unless we ask. I think I will ask.

My next appointment is Monday and is a heartbeat check. We'll do those every other week.

The nurse we met with afterward was a different one from last time. I do appreciate that she gave us a book - A Gift of Time - and an anencephaly care box with a pin in it for Michael's enamel pin collection. If it weren't for those gifts, I'd probably have left planning to run back to Dr. K.

There are so many other little details of this experience that I haven't written about. Like how I have maternity shorts now. In the first couple weeks, I actually packed up anything I had that screamed "maternity!" I'd been so excited to get that bin out right away when I found out I was pregnant in February. But after D-Day...

I don't know how to explain. It's not that I don't think I'm pregnant anymore. Or like I don't feel I deserve to wear maternity clothes. Neither of those reasons seem to fit why I did it. It was partially because I have so many shirts proclaiming in fun ways that I'm pregnant and one of my first despairing thoughts was about what it will be like to watch my belly grow and have people I don't know comment and ask. I no longer wanted a shirt advertising it before my belly will. But it's more than that and I haven't found the words yet to understand or explain.**

I'm getting bigger now and I don't have any appropriate summer maternity clothes. I finally decided this is ridiculous. With everything else I'm going through, why am I making myself stay uncomfortable by avoiding maternity clothes!? It is so freaking hot this summer. So I ordered a pair of shorts and I really like them.

I also haven't journaled about this but I joined a support group online of parents who chose to carry a baby with anencephaly to term. I am learning so much from their testimonies and I'm beginning to question everything "official" that I've been told in my appointments. These babies aren't normally given a chance and this is already such a rare condition. I think the truth is that there just isn't enough research and the statistics are probably slanted by the deaths from abortion so that what to expect for the parent who chooses to carry to term is all foggy. That's my suspicion.

In fact, one of the other parents in my support group told me to ask my MFM team to explain why they're saying Abigail won't make it full term - "because many of our babies do!" she said. So I did ask Dr. F and the answer was unsatisfactory while at the same time being marginally reassuring: there's no reason specific to Abigail, she said. It has more to do with my risk of developing polyhydramnios.

We met with T&M after the appointment and shared dinner. They told us more about S. - their son who would be 26 this year. I've known about him ever since I became friends with their daughters, B&M, in middle school. I've seen his picture and heard M talk about how her first memories are about S (she was the same age when S was born as Theo will be when Abigail arrives). And I knew his birthday was in the fall because there were several years one of my friends would casually mention that it was his birthday and they would be visiting him at the cemetery. I always admired how they talked about him as a part of their family long after he had passed. But I never asked further questions.

I asked T&M to tell us about S. About their experience and the things they did to remember him and how we should spend whatever time we have with Abigail so that as far as we can plan, we don't have any regrets. I never realized he had Trisomy 13. It was really helpful because I felt like they truly can relate and no one else I've met in person can.

I've always adored their family. They've been heroic parents in my eyes. A huge part of the reason I've wanted 3-4 children is because of how I idealize their family. Talking with them helped me envision a future again.

The past 5 weeks have been hell. Everything stopped even though we've been so busy and flooded with friends visiting to sit with us and cry and play games and watch movies. Distract us if they can...help us in some tangible way if we can think of anything. And yet everything was still stopped. Frozen. I couldn't see a way forward anymore. I couldn't see a future for our family.

I keep thinking of those four frames on T&M's wall. I can't tell you how many times I've walked into their home over the past nearly two decades and glanced at those four frames with four individual portraits of their four children: B, M, S, and E. Now after talking to them I can imagine a similar wall in our future home - the birth order is just different: Theodore, Abigail, ?, ???. Who will they be?

I can imagine going to release balloons at Abigail's grave. Keeping her pictures up and telling her story so that our children remember her with us, just like T&M have done for S. And I can see happiness again in our future.

I don't think Michael is there yet. I've spent a lot of time weeping over imagining Abigail's birth, death, and burial. He's been going to work and taking care of us. We processed infertility differently and it comes as no surprise that we will process this differently too. T&M talked to us a lot about that - how they processed differently and had different experiences but how they've clung to each other through it all. That was reassuring to me.

I've always heard that losing a child is one of the big ones - one of the big risks to a marriage's survival. It's one of the first things I asked Michael after we learned something is wrong with our baby. "You're not going to leave me, right? We're going to be okay. We're going to get through this."

So far he has been a rock for me. And I am no longer scared for us. It's just weird how last year's infertility strengthened us and now this seems to be as well. You never hear that advice at weddings. Marriage strengthening is supposed to happen in the date nights and seminars and retreats and stuff. That doesn't seem to be on God's syllabus for us - He's refining us in the fire.

I'd seriously love to follow in T&M's footsteps. I've always loved them and looked up to them. And if sharing this similar suffering with them is a necessary part of also experiencing just some of the joy and love that exists in their family, it's worth it.*** We have the most important thing in common: Jesus.

I have always hated when people quote Jeremiah 29:11 out of context. You know the one. "For I know the plans I have for you, says the Lord. Plans to prosper you and not to harm you, plans to give you hope and a future." Ugh how that has been misused. And yet....

And yet...

My heart is awakening. Light is coming back in. And I think...I think I believe that the Lord can say the same words, make the same promises, and give such a similar hope to different people in a completely different context. Like...maybe He is doing that right now.

No. Not maybe.

I believe He is doing that right now.

He knows the plans He has for us. And I'm choosing to believe that He is not out to hurt us - He is planning to keep giving us hope and a future.

Notes for Clarification from Today:

*For the record, I can't remember a justifiable reason for not liking her. I think I was just overwhelmed by all of this craziness I've been plunged into. And I think walking back into that building was traumatic and I was going to dislike even Mother Teresa if I'd come across her.

**In the week after that June 15th appointment, I read through the whole book A Gift of Time. It was incredibly cathartic and contained so many reassuring confessions from other parents in this niche, sad club we've joined. One of the first that I remember being so reassuring was that this experience I had with packing up my maternity clothes is something many others had done as well.

I had wondered if other things I was experiencing were normal in our situation but hadn't even considered this one. And so I have another reason for the content I'm including on this blog. I hope no one ever goes through what we are going through but if you are, I pray that you find sanity in our insane experience. I hope you hear that you are not alone, you are not actually crazy, and that someone else has gone through what you are going through but made it out alive on the other side. ***I've been slowly reading A Grace Disguised. It deserves its own post, but after I read chapter 9 I needed to come back and add the last paragraph to this post. I didn't feel I explained well enough what I mean by being willing to share in some of T&M's suffering if it means we could experience just some of the love and joy that I've seen in their family.

I think most people have similar thoughts - why would God allow something like this to happen to a couple like T&M? People have actually said that to us about me and Michael. I'm taking a liberty here, but from everything I know about T&M and their faith, I wouldn't be surprised if they would respond the same way I have when people have said that to me: "Why not me?"

I know myself and I know that I don't deserve the mercy and grace God has shown me in my life. I also know this world and how broken it is. I do not blame God for what we are going through as if He caused this directly or is punishing us or is some sadistic teacher with a masochistic lesson plan.

Michael and I both believe that sometimes this shit just happens. It's a horrible side effect of living in a sin-infested world. It's not about deserving or fairness. Why not me and Michael? Look around! Suffering is abundant in our world and we live here too - we're not exempt because we follow Jesus. In fact, following Jesus has sometimes actually made things harder for me. But you know what?

It's worth it. I don't deserve the grace God has shown me. I don't deserve the cross - a reminder that my Savior has suffered too. If anyone has faced unjust suffering - it's Him! And He did it for me when I was His enemy. He has given me second, third, fourth...abundant chances! He always takes me back with open arms. He loves me when I'm unlovable. And now He is giving me hope in the midst of unimaginable pain. This excerpt says it better than I can:

"So, God spare us a life of fairness! To live in a world with grace is better by far than to live in a world of absolute fairness. A fair world may make life nice for us, but only as nice as we are. We may get what we deserve, but I wonder how much that is and whether we would really be satisfied. A world with grace will give us more than we deserve. It will give us life, even in our suffering" (p. 115, Jerry Sittser, A Grace Disguised: How the soul grows through loss).