Regret

It's been five weeks and a day since Bethany was born. I've been thinking a lot over the past few days about her, the pain I'm going through, and whether I would do it all over again.

Bethany was a big surprise. We weren't intending to try for more babies, but she came along anyway. I didn't want to feel that pain again. I didn't want to bury another child, and I don't know that I can handle two special needs kids. I was terrified from the moment I saw two lines, and even though our worst fears were eventually imagined, I'm blessed to have known her. It's easy to say now, I suppose. And I certainly wouldn't have chosen this journey. But looking extra back, I am a better person for knowing them. After Bethany's passing my faith has been renewed. I am spending more time in prayer and scripture than ever before. I have a newfound love for the rosary, something that has tended to be more tedious than enjoyable for me in the past.

I've cried, wondered why, wondered how I could be asked to do this again, wondered how I am strong enough to do this again. I grieved my early losses as well, but differently. When you hold them, see their beautiful faces, watch them take a breath, rub their cheeks and smell their hair, hold their hands and kiss their fingers, at least for me, it leads to a love more intense than the love you have when they're still in utero. The love that swells up inside you when that baby is handed to you is indescribable. To wish that away in order not to have this pain, that's also indescribable. I'm glad I wasn't given the choice.

I say all this in order to give hope to those just starting their journey. The pain of a fatal diagnosis is more intense than any pain I've ever felt. Knowing your child, this baby who is kicking, rolling, hiccuping inside of you is going to die, to mourn a child not even born, is a unique experience, and there is no joy. You physically hurt. You want to scream and cry and throw things, and probably do. You want to collapse. To crawl into bed and never get out. And you certainly feel that deep despair after their death, but I smiled through the tears at the funeral. Our babies are in the arms of Jesus! The Blessed Mother is nurturing them. They're waiting for us, to greet us. I'm so blessed to have known them and held them. The pain is intense, but so is the joy. And eventually, the pain lessens and is replaced almost a entirely with peace, a peace that surpasses all understanding. If we allow it. If we choose it.

Why does God let bad things happen?

I have very little to add to Father Mike's wise and moving words. So I will just share his knowledgeable explanation. Short answer, we have free will, and he honors that. God did not even will that Jesus die. That was not part of his perfect will, but he used it for the greater good. When something happens that is not part of His perfect will, he can bring about a greater good from even the most evil, heartbreaking, or tragic of things.

Father Mike Schmitz via Ascension Press: Why does God let bad things happen?

One week

One week ago we were on our way to the hospital, preparing for Bethany's arrival via c-section. After the initial anxiety of the the first few hours pre-op, the day flew by. Those first few hours felt like minutes. I remember looking at the clock around 3 and thinking "this is going too fast". I kept her with me until around 1 in the afternoon the next day, but it has to be the fastest 26 hours of my life. What I wouldn't have given to slow down time. I sat and held her again on Friday for an hour. Then we saw her again on Sunday for an hour, and for two hours on Monday. None of it was enough. All of it went too fast.

We laid her to rest yesterday in an absolutely beautiful Mass and internment. Dear Father Francis gave a beautiful homily, while our parish priest concelebrated, and our friend Deacon Mike assisted at Mass. We are so blessed to be surrounded by such wonderful, faith-filled friends on this journey. The hugs, cards, prayers, and kind words of our friends before and after Mass meant so much and made us feel so loved.

There is a peace and a joy that comes to me through all of this. Even while I cry for myself, while I am heartbroken for my own loss, while I wish I had more time for my own memories, I know she is better off than she would have been here. I rejoice for her, and feel a deep, abiding peace that she is in a place of eternal happiness, that she will never know pain again, that any suffering she endured here on earth has come to an end. She is healed, body and soul. She is no longer in a broken world, with broken people. That is beautiful beyond words.

So my heart will remain broken for a time, but I know from experience that it will heal. I will eventually remember her without crying, and just be able to smile at the thought of holding her, at the pictures, at the memory of her tiny hands and turned in feet, without doing so through tears of grief. For now I cling to that certainty, that this pain will lessen, I will heal, and my children will heal. And then, one day, I will hug her again. And one day, my family will be together again, all 9 of us.

Goodbye for now, again

Am I really here again? Hugging another baby for the last time in this life, trying desperately to remember the feel of her body in my arms, so I can relive that sensation when my arms physically ache to feel her? Watching my daughter cry for missing the sister she never knew? How am I here again? Why, God, did you send me another soul to cherish, knowing she wouldn't be here long?

I ask these questions, though I know I won't receive an answer. I am not sure there is an answer to receive, as least not this side of heaven. Meanwhile, my soul aches, and grief is deep, my arms yearn to hold my baby, and my breasts are full of nourishment meant for her. But this time I can't even distract myself with mindless activities like errands, cleaning, cooking, or gardening, because I am already overdoing it after the surgery and need desperately to do nothing.

I'm designing a grave marker and assembling a slide show when I should be nursing and wishing I had a moment to wash the spit up out of my hair. I'm trying to be the best mom I can be to the two girls I still have with me, when I feel like I can't even care for myself. I'm trying to figure out how to help a 10 year old navigate her grief when I, a grown women, am not sure how to navigate my own.

None of it is fair. None of it is right. I will never cease wondering why otherwise healthy babies are abandoned, aborted, allowed to become addicted to drugs, or otherwise neglected or abused, while my children can't even survive a day out of the womb. I don't know what God is trying to teach me, but I only hope that my childrens' lives, their very existence, have made the world a better place, have made others appreciate their healthy families, have shown the world that all lives matter. All lives have value, even those of babies who are too sick to even make it to term. All I can do is lean on Christ, on his Blessed mother, and my friends and family, allow the Eucharist and prayer to sustain me, and be the best wife, mother, and Christian I can be, while I wait to meet my babies again.

We know that all things work for good for those who love God. Bethany's life will work for good. My grief will work for good. Please Lord, let this experience work for good in the life of my precious daughters. Let Julie not be anxious about having a family, about the very idea of pregnancy. Let our grief turn to joy at the thought of rejoicing with them and you again someday (but not too soon!).

Trust in the Lord with all your heart and lean not on your own understanding. -Proverbs 3:6

Bethany's birth

Beautiful miss Bethany Hope made her appearance on Wednesday, August 3, at 11:14am. She let out the sweetest, although brief, cry when she was born. Our priest was so generous with his time, arriving early to pray with us and staying through the delivery and beyond. He baptized her as soon as she was born. We were blessed to have over an hour with her, which is more than we expected, and then we still kept her with us through the night and into this afternoon, when I finally let her go. That is so difficult. I remember it with Peter, although it was a different situation, because we delivered him to the funeral home after he had passed. But leaving your child, or watching her be rolled away, even knowing it's only a body, is a unique kind of pain.

We had a wonderful photographer from Now I Lay Me Down to Sleep come. I think she got some beautiful shots, and I can't wait to see them. She did a mini newborn session, with her curled up in blankets, and I think they're going to be darling.

The surgery went as well as it could, and recovery is also going as well as can be expected. I'm about 36 hours out from surgery (at the time of writing) and my pain is well controlled but I am on a lot of medication. I am spending the vast majority of my day sleeping, although in 10-20 minute increments. I may go home tomorrow, but it's so quiet and peaceful here that I just may stay until Saturday. The doctor will begin weaning me off of the epidural pain relief in the morning, and see how I do on oral main medication alone.

We were very torn over the decision between c-section and vaginal birth, but I am at peace with the choice. Knowing that she was born alive, without the pain and straign of vaginal delivery, made it worthwhile. It's also likely that it would have been a long and difficult labor and delivery. Maybe she still wouldn't even be here as I am typing this.

This pregnancy has been one so mixed with emotions. The pregnancy itself was a surprise. Then finding early on that she was so sick. Living daily wondering if she would die in utero. Having her beat the odds and make it to 30 weeks, and to be born alive. It's been a real roller coaster of a year. And now we will finish off the year mourning the daughter we lost, but knowing we have another saint in heaven, and that she's up there with Francis, Sarah, Peter, and Molly, living a life of joy, free of pain, sadness, death, and sin.

Scheduled birthdate

Bethany is due to make her appearance on Wednesday morning. We met with the doctors and midwife yesterday, and after much discussion and many tears, we decided to have a c-section rather than go for a natural birth. There were many factors - her head and abdomen continue to grow at a rapid rate due to excess fluid on the brain and in the kidneys. There was a chance of laboring for days and ending up with an emergency c-section. It was also quite unlikely that she would make it through an induction alive. At Monday's ultrasound, we could see that there is no fluid at all around her, to protect her from the contractions and compression. This will allow us to meet her, for her to be born alive, be baptized, and die in our arms, instead of in my womb.

We've set funeral arrangements for 10:00 am on Tuesday, August 9, at Saint Ursula Church in Parkville. Anyone is welcome to attend.

I'm struggling a bit to keep it together today. This is such a unique experience. I've never known when my babies would be born, nearly to the minute. With Peter we had some hope of hours, maybe even days if we were really lucky. Bethany will likely have only minutes. It's an indescribable feeling, and I am struggling to find that joy today that I want and need to have. I'm so grateful that she will be without pain, without deformities, in the arms of our Lord, just a day from now. But that isn't making her impending death any easier today.

As always, your prayers are so appreciated.

On suffering, and a brief update

Sacrifice has been on my mind this entire pregnancy. Why are we being asked to bare and give up yet another child? How do I find the value in this sacrifice, this giving up of self? More than a few times I have found myself feeling bitter or frustrated, with 3 months of nausea, constant fatigue since January, insomnia nightly, pregnancy discomforts that make even walking difficult. And I don't have the benefit of knowing at the end of 9 months of sacrificing my own comfort and well-being that I'll have a cute, squishy, delicious smelling baby bringing me joy. I remind myself that all life is precious, all life adds value, even if the value isn't immediately evident, and that this is still my daughter, with as much worth or significance, to me and to God, as any of my other children. But even that fails to speak to the full meaning behind a true sacrifice, one made not with bitterness in ones heart, but out of love and even joyfully. Today I read this in Bishop Robert Barron's Eucharist. I thought it was so beautiful and moving that I read it several times, and then knew I needed to write about it.

A world gone wrong can be addressed only through sacrifice, that is to say, through an act of love which takes on evil and reworks it from within. In Jerusalem, the night before his death, Jesus indeed hosted a festive meal at which humanity and divinity were reconciled, but at the heart of the feast was sacrifice, the giving away of his body and blood. An act of self-negating love made possible the communion that they enjoyed.

The loss of my children is not evil per se. Death or disease is not intrinsically evil, but is the result of a fallen world. Through the act of not only giving up my body for the benefit of my daughter, but ultimately, in the very giving up of my daughter, I am uniting my suffering to that of Christ. Truly, without Christ, suffering has no meaning. Can my small sacrifice be used even for a greater good, to actually address a world gone wrong? A world in which over one hundred thousand babies are aborted each day? A world in which priests are slaughtered while celebrating the Mass? If that is true, then I gladly accept my cross, and I will bear it with joy.

This has been a bit of an emotional week, with seeing Bethany on ultrasound, and finding more about her current development. Her kidneys continue to grow larger than they should be, and there is so much fluid on her brain that her head has reached the size of that of a full-term baby even though I am only at the start of the third trimester. There is nearly no amniotic fluid, and I've been very concerned for several months that she may be experiencing pain or discomfort. So, when on Monday the perinatalogist said we may need to induce labor in the next few weeks, or I'll be facing a c-section due to the size of her head and abdomen, there was some relief. I am ready to meet sweet Bethany, even though it means saying goodbye. I am ready for her to be with Jesus, free of pain, deformities, or illness.

I was recently asked why we keep having babies when we know this can happen. I am sure many people have wondered, but only one person was bold enough to actually ask. My response was that only God knows why life is given and life is taken away. Our vocation as married Catholics means an openness to life, and a trust that God is in control. And just maybe, the lives of these babies we've loved and lost have impacted the world in ways we may never see in this life.

If you're suffering through something right now, I will leave you with this encouraging verse to medicate on:

We know that all things work for

good for those who love GOD,

who are called according to

His purpose. Romans 8:28

Even our greatest sufferings, most painful tragedies, and most difficult crosses can work for good if God wills it, if we accept it gladly, and we follow His will.

It's a girl! And the genetic test results.

It's a girl! I don't always trust my intuition, but I had a really strong feeling that this baby was a girl. I feel like God named this baby. From early on in the pregnancy, I knew she was a Bethany. It's not a name that has ever been on one of my baby name lists, so it was a bit of a surprise. But it seems fitting for this baby, to be named after the city where Jesus spent so much time, and where he raised Lazurus from the dead. It means House of Song and House of Affliction, which also seems appropriate as I pray that Bethany isn't suffering, and know that Jesus will raise her from the dead and take her to live with him and her siblings. Julie is choosing the middle name, and is still undecided, but Faith is on the short list.

The bigger shock was the results from the CVS test we had two weeks ago. We were fully expecting to receive a diagnosis of full trisomy 13 based on clinical findings on ultrasound. The brain, kidney, and heart abnormalities are hallmarks of full trisomy 13. But it's only partial. She has the same genetic makeup as Natalie. My first thought was what a miracle Natalie is. Natalie is so healthy, and yet Bethany is so sick. Aside from some minor issues as a newborn, and needing to have her tonsils and adenoids removed due to obstructive apnea, she has not had any health problems. Her presentation of partial trisomy 13 has been nearly all developmental. It's really astonishing that the same genetic disorder can lead to such severe symptoms leading to death in one child, and yet Natalie can be well enough to ask for french fries on her iPad as she gets off the school bus. Genetics are a really interesting, sometimes confusing and terrifying, and always fascinating thing.

Bethany is really moving a lot. I find myself worrying about her frequently, whether she is in any pain from the lack of fluid. I know she is very tightly curled in my uterus. I have prayed to God through tears to take her now if she is suffering at all. But for now, the pregnancy continues, and we prepare to meet her, and say goodbye, and bury her with Molly, Peter, and Sarah, who we lost at 7 weeks. Some days I can't believe we are going down this road again. Some days I even let myself wallow in self pity, just for a while. And then I remember how lucky we are that losing so many babies IS rare, that generations of mothers before me probably took it for granted that not all their children and nieces and nephews would make it to adulthood. That doesn't make the grief any easier, any less, but somehow it makes me feel less alone.

For now I try not to think about it too much. I know we have to purchase another cemetery plot, and hope the one next to Peter has remained reserved for us. I have to choose readings, and songs, and burial garments all over again. I remember acutely doing all of this the first time. I remember all the people I reached out to, the organizations that exist for no other reason than to support people in my position. But I haven't done that this time. Why? I am not sure. Other than that I feel like a veteran. I not only carried Peter for 42 weeks, but then Molly for 19 weeks. What could they tell me that I don't already know? Somehow it feels sort of like how the second babies rarely get baby showers. Sure you don't need the gifts, but why don't we celebrate their lives as well? Oh, you're losing another baby? That must be tough. I wonder to myself, does that make it easier, or harder? Should I be able to deal with this smoothly and unemotionally, because I've already done it? Somehow I think its the opposite. If I really think about it, if I really, really, consider that I'm going through all this yet again, I would completely crumble. So I build a small wall. I go about my daily life, and lie to myself a little. I tell myself it's really not THAT big of a deal because I came through this once, so clearly I can make it through it again. But then I spend so much time NOT focusing on what's happening, that I forgot it's not just happening to me. This baby has sisters, a father, grandparents. And then I remember how completely crappy and unfair this entire thing is.

Going down this road again

It's been quite a while I've written. I would like to make this a more regular thing, since writing is so cathartic for me. It's been almost 2 years since we lost Molly. I can't believe it's been so long, and even more so, I can't believe we are here yet again.

That's right. This is pregnancy number 7 for us, and will be loss number 5. For those of you following along at home, we've got a healthy daughter, a healthy-but-severely-delayed daughter due to partial trisomy 13, two first trimester miscarriages, and second trimester miscarriage, a son who died when he was 3 hours old, and now are pregnanct again with a child who is not destined to grow up in this world.

We found out in January that I was pregnant. I was immediately struck by the differences between how I react to a pregnancy, and how most other married mothers would react to a pregnancy. The normal response would be things like, maybe Emily will be ready to move to the big girl car seat so this baby can use the convertible seat. Will I need a new stroller? How should we shuffle kids and rooms to make room for a new baby? Do you think Matthew will be jealous of the attention the new baby will receive? For us, it almost stops at "I am pregnant". There is no planning. Sure, we dream. We wonder. We talk names a little bit (no matter what happens the baby gets a name). We think about what could be, but we think of what could be in both positive and negative terms. Will this child need lifelong care? Will I lose the baby next week or next month? Will we lose another baby at birth?

My pregnancies are always a guessing game, at least until that first ultrasound. This time we saw the baby at about 13 weeks, in early April. It was pretty evident right away things were not good. It's been a long time (8 years!) since I saw a normal ultrasound. We knew we weren't seeing anencephaly. But the head still didn't look normal. As usual, those ultrasound techs must practice their faces of steel. She gave nothing away. But the perinatalogist came in, and the look of pity made it evident. We were looking at probable full trisomy 13, she said, a less likely but still possible outcome of our balanced translation. There are brain, kidney, and heart abnormalities, possibly quite severe and life limiting.  We already knew a lot about trisomy 13. Natalie has partial trisomy 13, in where she has about 30% more genetic material on one 13th chromosome (chromosomes come in pairs) than she is supposed to. It's suspected that this baby has a full third copy of the 13th chromosome. As far as trisomies go, 13, 18, and 21 (Down Syndrome) are the most common. We know that 90% of babies do not make it to their first birthday. We also know that virtually none of those 10% survivors have the severe brain abnormality that this baby does. We found out last week that the kidneys are so poorly functioning that there is almost no amniotic fluid, so the baby's lungs are not able to to properly develop.

My reaction this time around has been much different than with Peter's diagnosis. I still look back on that day as one of the worst days of my life. The shock of hearing that your child is going to likely be born alive but then die in your arms is something no parent can ever really prepare for or fully understand until they've been there. The grief, the mourning of a life that is still inside you, preparing for death when you literally feel their kicks. It's not a feeling easily put into words. But this time was different. This time, I know what to expect. I know that there is joy mixed with the grief. I know that we will overcome that grief. I know my husband and I are strong people, that God has blessed our marriage and granted us the gift of strength. I know I have so many people praying for us. I know there is a light at the end of the tunnel. And I know that, God willing, when I get to heaven, I will have 5 precious souls there to greet me and call me momma.