In honor of National Infertility Awareness Week (4/18-24/21) I wanted to share the letter I contributed to Emily Long's newest book, In the Waiting Time, Messages from Infertility Warriors. It can feel vulnerable and daunting to share about infertility (the acronyms alone!) but it also feels really important to speak out. You can find lots of great information about infertility and how to support those going through it here: https://infertilityawareness.org/ https://resolve.org/support/for-friends-and-family/ Brave Fertility Warrior, I’m sorry this is so hard. This thing that seems so easy for everyone else. This thing that happens by mistake, with no planning or intervention, no pills or needles, no muss no fuss, no heartache. It’s not fair. But it’s not just one “thing” either, is it? Getting pregnant isn’t just trying to conceive- it’s your hope, your dream, the way you envision your family- your life. It’s your baby and your parenthood. The fact that it isn’t easy can very quickly get wrapped-up in your self-worth. Then you can find yourself spiraling into over self-analysis. That vicious cycle - the “yes, this is it- I feel different- I know this HAS to be it”, to the let down, the disappointment, the heartbreak, the grief. Then the self doubt can seep-in. The “I don’t know what’s going on with my body, or my partner’s body, this will never happen.” None of this helps. Then add in all of the platitudes that well-meaning people seem to never run out of- “just relax”, “it will happen”, “if you weren’t so stressed about it all, you’d already have a baby”. And don’t get me started on the clueless, innocent questions that are so much salt in the wounds of infertility...the hurtful list goes on and on. But I don’t have to tell you that- you know- and I see you. I see you giving yourself the pep-talk every cycle, trying to invest your heart in it every single time. It’s exhausting and daunting and tortuous. For me, my journey to parenthood started as someone I would eventually resent- we got pregnant in the first month of trying after getting off the pill. Honestly, we weren’t even trying, we just stopped preventing. I assumed infertility was something I would never have to face, and while I was aware of it as a concept, I was just grateful that I didn’t have to endure knowing more. Then at the end of our first pregnancy, just past our due date at 40.5 weeks, we got the devastating news at a routine ultrasound that our precious baby was no longer alive. She had a strong heartbeat at our appointment on Tuesday and by Thursday morning, she had died. Inside of me. I delivered her that night, though we didn’t yet know she was a girl. We wanted to be surprised. After 4 hours of active pushing I gave birth to our first child. The first thing I said was, “Well, is it a boy or a girl?” “Girl.” The doctor said it so quietly. It was all so heartbreakingly quiet. A girl. I looked at my husband and we knew her name was Mathilda- our powerful battler. I could write a book about my experiences around Tillie and what kind of Mother she has made me- but I will save that for another time. Another book perhaps. After Tillie died we knew we wanted to try again. We were in those early stages of intense grief, and while it was suggested to wait a bit longer for our emotional well-being, we couldn’t- we had to try as soon as it was physically possible. Looking back I am glad we did. After months of trying, timing, and tracking ovulation with no success we started infertility testing. Ultimately I was diagnosed with a low ovarian reserve. I was running out of eggs faster than I "should" have been at my age. So, while it didn't mean we couldn't get pregnant, it did mean that we had no time to waste and that we would need help. Not the worst news, but coupled with our grief it felt appropriately unfair.. So the plan was to try a few rounds of IUI and if that didn’t take we would have to talk about IVF. After taking Clomid, going to acupuncture, internal ultrasounds to measure follicles, and a shot of Ovidrel to get the party started, we went in for our first round of IUI. It just so happened to be the day before Mathilda’s first birthday. To say we were emotional wrecks is an understatement. Luckily, we also decided to rescue our sweet pup, Zuzu the same day. We named her Zuzu after the youngest daughter in It’s a Wonderful Life. Zuzu’s flower petals are George’s final reminder that life is worth living- and we certainly needed that reminder then. We were just trying to hold on to anything we could. Not to mention, holding on to any kind of hope was exactingly complicated because this thing that we so desperately wanted was a thing we were equally terrified of, because of our loss. The fear and the what-ifs were overwhelming. I am grateful that we conceived on that first round. It was a gift to only have to endure one round, after all the testing and trying. All of the time spent trying for a living child was no small feat and it is something other people- who have not experienced the devastating challenges and losses we have- simply cannot even begin to understand. We held Tillie in our arms, we know her smell, her weight, her sweet skin. We had a beautiful child, and it is not fair to have to start all over again when all we wanted was her. After the long-haul of pregnancy after loss, filled with more tests than I can count, we delivered our second daughter, Winslow- alive. Then, when she was eight days old, I knew something wasn’t right. We brought her to the pediatrician who immediately called an ambulance to rush her to the ER. She wasn’t getting blood to the lower half of her body, she had gone into shock, and she needed emergency open heart surgery. We were transported to Boston Children’s Hospital where they saved her life, along with ours. I have contemplated - if Tillie had lived, would Winnie have died? Honestly, if we hadn't experienced Till’s death, I don't think we would have been as hyper-vigilant. We just knew from personal experience that terrible things happen and it doesn’t always go to plan. Winnie didn't get an in-utero diagnosis- I just had a pit in my stomach that she was going to die. If I hadn't known that life is cruel, and babies die, and infertility is traumatic , I wonder if she would have had the more common outcome for her condition- she wouldn’t have woken up. I say all of this just to express that you will never be the same because of this journey. You will be a different person now. You will live in a different way than you ever would have if you weren’t facing this. The grief and struggle of infertility and loss wear on you- emotionally and physically. I look in the mirror and can see it in my eyes and on my face. I carry it- like my love for Mathilda, like my fight for Winslow. Those experiences won't go away- they are a part of who I am, a by-product of the irrevocable change in me from navigating this path. After all of that, we still knew that we wanted a living sibling for Winnie. I figured it would be a similar experience and we should get going as soon as possible. We started by testing my levels. Come to find out my AMH had dropped again, by more than 50%, and the red alert light in my mind started flashing. I stopped pumping for Winnie and got on Clomid to begin the IUI process again. It didn’t work. I upped my Clomid- it didn’t work. The two week wait became agony. I started dreading the emotional disappointment each cycle. I began to feel desperate and hopeless. It was scary and sad. I just had to keep trying and hope that my body could do it again. It was all so intense and after five unsuccessful rounds we were feeling incredibly defeated. We had one last chance. IVF would have been the next step, but we couldn’t afford it. This was all we had left. The timing worked out that we would go in for our sixth and final round of IUI on the morning of my 37th birthday- that had to be good luck, right?! It worked for Tillie’s birthday, so why not mine? I went through all of the usual emotions in that two-week wait, all of the over self-analysis, the ups and downs- and it ended in two little pink lines. I took an extra pregnancy test to be sure- just like we did the first time with Tillie. We were pregnant again. We did it. Deep breath. Could this be my boring baby? The one who is born alive and can stay alive without a major surgery? Yes, and his name is Hugo. As I write this he is a sweet koala of a baby who is ten months old and gives hugs like he knows what we’ve been through. I decided to get an IUD put in as soon as I could- the end of an era. I just knew we were done. It was sad- both me and my OB cried- we have been through so much together, we are forever linked. She is a true Hero of Compassion and I will love her always. I don’t know how your journey will end- what your family will look like when this era is over for you, but I do know that the struggle and the fight will be worth it because you will be able to look back and know that you did what you could- what was right for you. I can’t guarantee it will be what you hoped for or dreamed of- but it will have made you who you are- a fertility warrior. In love and solidarity, Darcie Mama to Mathilda, Winslow & Hugo https://lostlullabies.weebly.com/ https://www.facebook.com/lostlullabies
0 Comments
You Brave and Beautiful Soul,
I want to tell you, Congratulations. This might be a word that you feel doesn’t belong to you, but let me tell you, it does. Congratulations on getting pregnant. That is no small feat for some, especially with the havoc grief can wreak on your hormones. Congratulations for having the tenacity to try again. Here you are- on the path you were so cruelly and unfairly thrust off of in the past- and you’re doing it. You’re doing it! Not to mention, you’ve somehow managed to open this book to find some support, so good for you. Pregnancy after loss is beyond challenging, and sometimes we have to disconnect in the name of self-preservation. But I think if you have picked up this book, you have already taken a really incredible step towards managing to engage in some self-care during this pregnancy. For that, you should be applauded. So bravo! So many people in our lives can’t begin to understand the depth of anxiety, stress, and fear that comes along with pregnancy after loss. Managing the response to trauma is a full-time job in itself, never mind finding the courage to take care of this new baby by taking care of yourself. I was so angry at my body for so long. Our first child, Mathilda died shortly before she was born at 40 weeks. Then, cruelly, we struggled with infertility. It was salt in the wound that our only baby died and then we weren’t sure if we’d be able to conceive again. After infertility treatment we were able to get pregnant, which was incredible, but it was so hard to shift my way of thinking. I now had to try and take care of this body that had let me down. This body I had been basically ignoring until then. We managed to go on to have a living child and I was so proud of myself- I got through it and we came out the other side with a beautiful baby girl. I could breathe again. Then, when she was just 8 days old, we were rushed to Boston Children’s Hospital because of an undiagnosed critical coarctation of her aorta that required life-saving emergency surgery. Thankfully she survived and is now thriving, but in those moments I couldn’t help but blame myself, my body. When we decided that we would regret not trying to give her a living sibling and that we were willing to try again- it was another struggle with continued infertility. I had to take care of myself, almost in spite of myself. I had to just force myself to believe that I could have a healthy living baby- one that could be born alive and not need a life-saving surgery to survive. It was one of the hardest things I’ve ever done. I also tried to enjoy what I could of that third pregnancy because I knew I would never want to do it again. Enjoy is not the right word- maybe find moments of being truly present? Savor some things so that I could remember the details when (and at the time ‘if’) my child one day asked me about it. I was someone who had to constantly use precursors like ‘hopefully’ and ‘if’ instead of ‘when’. Once I stopped apologizing for it and embraced the fact that I needed these precursors, I felt a little better. That is what I needed to take care of myself. I didn’t want to jinx anything (as if that’s possible). And it’s okay if you can’t go all-in on the possibility of a living baby being placed in your aching arms- but if you are able to believe it, even just for some of the time, don’t give yourself guilt for it. It’s all hard enough. I guess what I’m trying to say is, give yourself permission to handle this pregnancy in whatever way you need to. However feels best to think about (or not think about) this sweet baby that you so desperately want is truly up to you. Don’t let anyone else tell you how you should feel; because you are the only person who can know what it is to take this leap of faith and trust your body again, a body that you may feel betrayed you in the past. I wish I could tell you that everything will be okay and that lightning never strikes twice, or some other platitude that I am sure has been thrown your way, but we all know that isn’t true and no one can guarantee anything in this life- we loss parents know that better than anyone. What I can say is that you’re doing it! I also want to remind you that there is room for all of your emotions- you can feel joy and anticipation while experiencing deep fear and dread. We are complicated creatures, capable of feeling all of these things- often at the same time- so allow these feelings to come. I have found that acknowledging them and giving them some space will serve you far better than trying to ignore them or feel guilty for having them. Life will always be bittersweet. Their absence is relentless. I can say that you will get better at carrying that weight. I am sure you are better at it now than you were the day after your life changed forever. The same is true of having a living child. You will figure out how to negotiate all the milestones, the lost sibling experiences, not being able to parent all of your children together in the same physical space- you will figure out what works best for you and it will continue to change and grow as you and your beautiful family do. I am proud of you. You are doing it. I am quietly in your corner rooting for you- along with all of the other bereaved parents. On days where you feel like it’s all too heavy, remember that we are here. Feel our vibrations of love and well wishes in the air around you. Breathe it in and let the courage inside of you grown just a little bit stronger. Let that love bloom inside of your heart and take it one moment at a time. You’re doing it! In love and solidarity, Darcie Mama to Mathilda (Born Still March 4th, 2016), Winslow, and Hugo We did it. We brought home our second living child. We made it through another stress-filled, anxiety-riddled pregnancy after loss. A fair amount of disassociation and obsession with kick counts got me through. I’ve been keeping my head down and my mouth shut. Replying with a smile, “Yes, it IS exciting” while I silently go through all of the other things pregnancy is- like terrifying, exhausting, demanding. It’s like when people comment on the timing of having a baby- as if some of us have a choice. We also struggle with infertility, so just getting pregnant at all is a victory after rounds and rounds of fertility treatments, drugs, and shots- so honestly I couldn’t care less when this baby arrives, as long as he’s alive, Susan.
But we did it. We made it through part one of the hard part. Our first daughter, Mathilda, died shortly before she was born at full term. Our second daughter, Winslow, was born alive and came home, only to end up needing an emergency transport to Boston Children’s for life-saving heart surgery on day 9 of life. She did great and her time in the CICU was short, all things considered. She is now a thriving, too-smart-for-her-one-good, almost two-year old and just earned her BIG SISTER status this week. She is already a little sister to her big sis, Tillie- something she knows but doesn’t quite understand yet. Now she is also a big sister to her little brother, Hugo- who she lovingly refers to as “baby HUG-o”. It’s pretty cute. So now, as Hugo is a week old today, I take a deep breath and hope that he won’t need some life-saving medical procedure. I know, it’s highly unlikely. I know, his fetal echo came back normal- but of course Winnie had a Critical Coarctation of the Aorta, which starts to show up around this stage of life. I know, lightning rarely strikes twice. I get it. But here’s the thing- Winnie was supposed to be my easy baby, the one who lived- and she did, but damn if it wasn’t without a huge fight for a very little baby. I just can’t believe that it can be true until I see it. It’s never easy. Hugo needed an extra night in the hospital last week for phototherapy because of his high risk level of jaundice. I know this is so common, especially for smaller babies born on the earlier side (even though he was full term at 37 and 4), but you would have thought I was being told he needed heart surgery. I couldn’t control my response to seeing him struggle under these lights, blinded with the tiniest pair of goggles you’ve ever seen. I rationally knew he would be okay- the light therapy would actually make the next week so much easier than going in every day to check jaundice levels and chase the numbers like we did with Winnie. I couldn’t really comfort him and maybe that was it- I felt helpless again. I felt worthless that here was another one of my babies who needed help to live. Why can’t I make bigger babies? (All three of our children were born at 5lbs 1oz- which could be smaller, but still) why can’t my babies just live, on their own, with no intervention? So, here’s the real question- how can I acknowledge these traumatic experiences- Tillie’s death, Winnie’s surgery, our struggles with infertility, and come to a place where I am not internally agonized by all of the horrible “what if’s” and always falling on the wrong side of the statistics? After Winnie came home from her surgery I remember saying- death really IS always right there, just waiting. We can forget, for a bit of time, but then, there it is- the possibility of death. That feels like it isn’t a very good way to live, with that mentality. I have to say, I am able to choose hope over fear most days, and for that I am really proud of myself. I guess it’s just hard to have all of this swirling around inside and not really have an opportunity to ever let it out. No one wants to hear about my fears, my daughter’s death, my other daughter’s fight for her life- and when I mention these things I feel guilty- like someone will think I always need attention for these traumas. I don’t liketo talk about them- but they are a part of my story- a part of my motherhood. Leaving them out feels like a disservice to my truth and so what if that makes others uncomfortable?! I get it- people want to fix it all, find the silver lining, focus on the positive. Assure me that “he will be fine! It won’t happen again! You’ve earned a normal maternity leave!” But I know better than anyone, that isn’t how it works. I certainly didn’t ‘earn’ the other experiences. So I will sit here, watching Hugo gently breathe in and out; wondering if he is sleeping too much; checking his feet every hour to be sure they haven’t turned blue; trying to sleep when I can in order to keep some perspective. I can also say to myself- We did it. We are doing it. And hopefully we can keep doing it. I just need to recognize struggle, say it out loud, in order to also recognize all of the good. Let’s try to support each other to say all the things- it’s okay to recognize the hard, the stressful, the scary- and we are all smart enough and brave enough to hear it and just be with it. Let’s give that to each other- and ourselves- especially as parents. Let’s give one another permission to take out the “at leasts” and just let the fears and challenges exist on their own. We don’t need to qualify them. They can stand on their own, apart from the amazing, the beautiful, the good. We don’t have to pair these things to make others feel better because we all have these things that we carry. Let’s be honest with one another and then maybe, just maybe, the load won’t feel quite so heavy. Two years ago today, on April 30th, we buried our daughter. She was born into the world silent and still on March 4th, 2016 but we had to wait for the autopsy and cremation. Then we had to wait a bit longer for the weather to warm so we could break ground at her gravesite and bury the sweet bio-urn we chose to put her ashes in- so that one day flowers could grow there and some form of life would return.
Honestly, I am grateful that we waited. My husband, Jonathan and I took those 8 weeks and poured all of our love, that had no where else to go, into writing her graveside service. (You can read it here: https://lostlullabies.weebly.com/speaking-out/mathildas-graveside-service) I find it strange that April 30th will always hold meaning for me because it wasn’t the day that I lost my daughter, but it was ultimately the day that I started mourning her, and that’s a big deal. I was privately grieving up until that point and at her Graveside Service, I started to let other people in (somewhat) and embraced the idea of allowing my grief to be expressed outwardly. When I think back to those first 8 weeks I am reminded of what a living nightmare it was- I couldn’t wrap my head around the reality that our beloved daughter had died. I would wake up every morning and have to realize it again and again- that was one of the most horrific parts of the early days- waking up thinking it was all a bad dream only to remember (again) that it was my new reality. I am a bereaved mother. I remember having to fight the impulse to rip out my hair- I just needed to find a way to change it- and I couldn’t. I had a lot of magical thinking at that time- I would ponder how I could get her back, how I could save her. What could I have done differently? Why did this happen to us? I wanted to implode in on myself. I wanted to self-destruct. My husband was by my side the whole time and we had some incredible support from our mothers and close family, but it was hard to keep our heads above water. On April 30th we saw friends and extended family- people surprised us by being there at Mathilda’s grave with us. That is the day I got to share my pain and sadness simply by being with others. It was a hard day- I didn’t want to get up, I didn’t want it to happen. I resented having to go buy a dress that would fit my postpartum and grief-stricken body for my daughter’s funeral- I didn’t want to leave the house, but looking back I can see how important that day was for me. There is something to be said for ritual and that gave us some comfort. The people who came to our Graveside Service for Tillie are forever cemented in my heart- I will never forget the love they showed just by being present. They all gathered at that small, old cemetery on a wooded hill, stood by our sides and validated Mathilda’s life by simply bearing witness. Since that first day of public mourning I have found a voice in speaking out to help shatter the silence of stillbirth. I have slowly built the strength to try and remove some of the stigma around pregnancy and infant loss by taking about Tillie. As much as I dreaded this day two years ago, I now wish I could have a graveside gathering for her every year! My husband and I visit her grave often and we have some family and even friends who go to visit our sweet Tillie from time to time. We keep a small portion of her ashes at home with us and around our necks in necklace urns, but it is really nice to have a physical location, out in the peace of nature, where we can visit her too. So while today isn’t the day we found out we were pregnant (June 25th) or her due date (February 29th) or her birthday (March 4th) it feels like an important date to recognize. It is a milestone for sure and a good day to reflect on all we’ve been through and just how far we’ve come on this path. I’ve said it before and I will continue to say it- the weight of her death is still just as heavy, we’ve simply gotten better at carrying it. Here’s to you, Tillie. Maybe this will be the year that the flowers from your bio-urn will begin to sprout. I am honored to be a contributing letter writer for Emily Long's new book, From Mother to Mother, On the Loss of a Child. Emily's work and writing has been such a comfort to Jonathan and myself as we have navigated these past 18 months of grief. I was fortunate enough to take one of her on-line writers workshops for bereaved mothers and it became a wonderful resource and mini-community in this world of child loss. Emily is an incredible advocate for other parents of loss and I am proud to be included in this newly published book of hers. You can read my letter, a sample from Emily's important book, below: Dear Brave, Beautiful and Broken Mama,
There are no words that can fix this. I wish that there were, but I’ve learned that nothing at all can fix this. There are many words, however, that can help. I hope some of these do. First and Foremost: You are a Mother. When my husband, Jonathan, and I lost our first and only child Mathilda, who died shortly before she was born at 40 weeks and 4 days on March 4th, 2016, I needed to hear this. I needed to hear it and read it - again and again and again - before I actually started to believe it. So, let me repeat that. You are 100% a mother. It’s hard to reconcile this when your beautiful baby isn’t in your aching arms, and your motherhood looks nothing like what you planned. You will still “mother” your child. You will honor them and incorporate them into your life in whatever ways feel right to YOU. Eventually, you may speak their name freely and might even love it when others do the same. To me, there is no sweeter sound than my Mathilda’s name, especially when someone else says it. Once I realized that and embraced it, others did the same. Say what you need. That is to say, try and communicate as best you can. It's hard. I know it's hard, but the better you get at saying what you need, the better the people who love you can help instead of unintentionally hurting. Tell them what bothers or infuriates you. Tell them how you want them to talk about, or not talk about, your baby. It seems unfair that not only do you have to endure the loss of your baby, but you also have to help people know how to act around you. Trust me, most people want to do and say the right thing. While there is nothing they can say or do to fix this loss, ultimately they will follow your lead. I have found that it is important to find ways to validate your child’s existence and importance in this world. If you want to plan a gathering in their honor - do it. We wrote a service and planned a graveside gathering two months after we lost Tillie and decided to make it an open invitation. So many unexpected people came out to show their love and support and those people are forever sealed in our hearts. If you give people a chance, sometimes they can surprise you. We have a portion of Mathilda's ashes in a tiny treasure chest. We keep this in her crib and kiss it goodnight, every night. As often as we can, we take her on adventures with us. We both carry her in our hearts, and literally in our necklace urns, but this other physical representation of her, this tiny treasure chest is a way for us to bring her on hikes and bike rides and family visits. Our immediate families know this is our sweet Tillie and they love when we bring her with us. We have started taking photos of the places we go with her, just like any other parents. This works for us and is something wonderful that we can all do together to include her in our lives. The intensity of your grief is a reflection of the intensity of your love. The first time I heard this, it really helped me. I was feeling guilty for my emotions and felt like I would never feel positive again. Once I started to think about my pain as a direct reflection of my love, it helped me to not feel as badly about it. The thing is - no one can know the pain you are experiencing. Every writer in this book has experienced the traumatic loss of their child dying and yet, we are all different. We are different people and we experience and cope with these losses in different ways. So while we are all trying to help you feel less alone in this devastating grief (and you are NOT alone), this loss is yours to carry - just like my loss is mine to carry. The weight at first is unbearable, but I have gotten better at carrying it. The event of my daughter dying will never go away and I don’t believe that time heals all wounds. Some things cannot be healed. My first child will never physically be here with me and her absence continues to be ever-present in my life. I have found ways to cope that work for me and I promise that you will get better at carrying this loss. It’s not a steady climb and it isn’t linear, but you will get more used to the weight. Things will never go back to the way they used to be, but you can survive this. You are irrevocably changed. You are now a bereaved mother. What a heavy title. The only other word I have come across that gives a name to this new version of myself is Vilomah. It’s a Sanskrit word that means ‘against natural order - the grey-haired should not bury the black-haired.’ I like this word. I wish it didn’t have to exist, but I like it. It’s not a common word in our culture, but it feels important to have a title after what we’ve been through, like a widow or an orphan. It validates how different I feel from my former self. As I write this I am fifteen months out from the day my daughter was born still into this world. I am a different woman. Things in my life that used to be important to me are no longer fulfilling. It is hard to recalibrate. It is bewildering to look in the mirror and not recognize the person staring back at me. It has been a really scary time and I am still figuring it out. Everything in your world has come crashing down. Give yourself permission to only pick up the things that help. You will find new things and new people. Some will stay, but you may have to rebuild your life from the ground-up again. Give yourself permission to take your time. You have been through a major trauma. Try to be gentle and compassionate with yourself. This is no easy task but it is imperative. Traumatic loss affects you physically, mentally, emotionally and spiritually. Now, more than ever, you need to consider yourself first. So many women are people-pleasers. This is not the time for that. You have to try to let that go and really listen to what you need. Earlier I suggested that you ‘say what you need.’ Well, first you have to know what you need and the only way to do that is to be gentle with yourself and listen. It is not natural or fair to outlive your child. Now you find yourself in a world that is over-stimulating and has the audacity to continue on. Everything should stop. No one should get to be happy or be pregnant or have a baby. These are irrational thoughts and feelings, but they might come up for you, they did for me. I had to try really hard not to beat myself up for having these feelings. I had to learn to be kind to myself and put my own needs first. Do not do things just to make other people happy. You are the one in pain. They can be uncomfortable or disappointed if it spares you further suffering after the loss of your beautiful, irreplaceable baby. Whatever you’re feeling is okay. Try not to feel guilty for your emotions. This is a hard one, I know, but I promise that the better you get at letting yourself feel what you’re feeling, the better off you’ll be. It’s so hard to surrender yourself to the grief and the deep, deep sadness and longing. The anger and blame are intense. I’m sorry that you have to go through it all but, in my experience, there is no running from it. You do have to go through it, one way or another. Try to be good to yourself in the process. I’m so, so sorry that your child died. It’s not only your loss. It’s not only your family and friends’ loss. It is the world’s loss. I like to think that our exquisite babies would have made this world a better place had they lived. I know that they have done just that by having existed at all. Your baby made a difference and will continue to do so in more ways than you can imagine. Here’s to our beautiful babies. In Hope and Solidarity, Darcie Mathilda’s Mommy Born Still on March 4th, 2016 www.lostlullabies.weebly.com https://www.facebook.com/lostlullabies/ I have been keeping fairly quiet throughout this subsequent pregnancy with Mathilda’s little sister. It’s almost like if I can hold my breath for these 39 weeks I might come out the other side unscathed and with a living baby in my arms. Being pregnant again after burying our first daughter Mathilda who died shortly before she was born still at full term- 40 weeks and 4 days on March 4th, 2016- has been really challenging. My husband, Jonathan and I knew it would be- we knew it would be a struggle to stay positive, to see other pregnant couples full of ignorant bliss at the doctor’s office, to handles people’s well-meaning yet sometimes hurtful comments. Of course we would rather be on this journey, navigating the rocky waves, than not. That was our choice- to try again. Not to replace our sweet Tillie, but to give her a little sibling and ourselves the chance at a living child.
I guess I am writing this because so many people have been checking in with me lately and I am feeling like my radio silence might be causing concern. All is going smoothly with our second daughter’s pregnancy- which is wonderful. I am grateful for this, but it doesn’t help curb my fears and anxieties. Mathilda’s pregnancy was a smooth one too- she had all of the right test results and met all of the benchmarks of a healthy gestation- that is until the very end. So, we know that there is no “safe zone”- we can’t help but operate from a place of fear this time around. We know a fact that most people would prefer to not even think about- babies die. Our baby died. That is the only experience we have with pregnancy. So when people say to me- 'stay positive' or 'don’t worry'- I just have to laugh/ throw something. It’s so very easy for them to say, but that is simply not a possibility for us. I also appreciate that it is hard to know what to say- I get that. I think the worst thing someone can do is deny reality- like this pregnancy will fix our grief. It won’t and it can’t- it has been helping and as this little girl gets bigger, squirming and kicking, it does really help in many ways. It also reminds me of how my Mathilda used to move around and kick me at the bottom of my right rib cage. I miss that. I miss her being here. I was worried I wouldn’t be able to tell that it wasn’t Tillie back in my belly, but this second daughter is different. I can feel the differences and the similarities and I know she is her own person, but has some of her big sister in there too. I hope she lives. I hope she gets to live the life our Tillie never will. Only better, her own life- which will be different than Mathilda's would have been. Lately I have been grieving their relationship. If given the chance, we will raise this little girl to know all about her big sister, but they won’t be able to get into trouble together. Commercials are the worst for this- especially right now- every commercial I see on television features babies and children. They hit me hard and from out of the blue and suddenly I am weeping on the couch because our girls won’t get to sneakily give each other terrible haircuts. Luckily I don’t watch a lot of TV and when I do I am at home, so I am free to blubber away at the little girl in the party dress who fell asleep on the potty because she had the “time of her life”. Sometimes things will catch me when I am out- anything having to do with sisters. I have started buying a lot of “Little Sister” onesies. I hope she gets to wear them. It makes me feel better to have the proof written right there- this baby is someone’s little sister and I refuse to deny that. I refuse to deny Mathilda’s existence. I won’t do it. I’ve found the most popular question, now that I am visibly pregnant (at 27 weeks as I write this) to be “Is this your first?!” I always answer honestly (no, we have a daughter) and then inevitably talk about our Tillie when they ask me how she is and I share that unfortunately she died. It’s not the answer they expect or want, but I decided long ago that I would never make myself feel worse for the two-minute comfort of a stranger. Pregnancy and Infant loss is an uncomfortable topic- and it happens to families all of the time and by staying quiet, I am not helping the social acceptance of that. Why should we feel bad on top of mourning our beautiful brave babies?! I won’t do it. I was told the other day that because my first child didn’t live my life hadn’t changed yet. Without missing a beat I said that a year and a half of intense grief had most certainly changed my life- not in the way I had hoped, but I am a mother and my life has changed. Of course I hope that it changes in a different way this time around, but I will not let a stranger judge my motherhood or the degree to which my life has changed. He went on to say that it will be an amazing experience when I give birth. I let him know that it was an amazing experience when I gave birth to my daughter- just because she didn’t live didn’t mean I didn’t give birth to her or cherish the time we had together. I thanked him for his well wishes and tried not to make it too awkward. I did however break out into hives because I don’t like confrontation and the whole thing made me upset and nervous. Overall though I walked away feeling so proud of myself for speaking out. I wasn’t sure how I was able to think so quickly in the moment- oftentimes I have the ‘I-should-have-said's’ but this time I really stood up for myself, for my daughter and for my motherhood. I know he meant well, but I just couldn’t agree or let it slide and I am glad that I didn’t. At the end of the day if there was a subsequent pregnancy bubble option, I would take it. If I could nap from now until November, I probably would. Initially I thought that I would cherish each moment of this pregnancy since I knew that it could be all we get, but it’s just not that easy. The over-self-analysis of the physical and emotional, the instincts of self-preservation to not connect with this baby that I didn’t think I would experience but am, the longing for Mathilda as I get to know this new little person growing inside of me- it’s a lot to handle on top of managing a high-risk pregnancy and working full time. The constant battle in my mind between hope and fear is exhausting. Again, I am truly grateful to be here, and hope to welcome a living breathing baby in November, but I can’t lie and say that it is easy. All I can do is hang in there and hope for the best. So, that’s what we are doing. When I was pregnant with my first daughter, Mathilda, a dear friend shared with me that the Honey Bee is an important symbol to hold on to in those last few months of pregnancy to remind us of the sweetness of this special time, before birth, with our babies. Of course I could have never known that my sweet Tillie would be born still at 40.5 weeks. I look back on my first pregnancy with so much emotion but one thing I am grateful for is that I was able to embrace the idea Honey Bee. Even before I knew of it, I was cherishing each moment with my baby girl rolling around inside of my growing belly.
Now, after having to tread down the path of secondary infertility, I am pregnant with our second child, thanks to the wonders of intrauterine insemination (IUI). We are having another daughter. With Mathilda we didn’t find out the sex of the baby, but this time around we are looking for anything and everything that can help us to connect and make this pregnancy feel more real. After a year of bearing the unbearable, it is hard to believe that anything good can actually happen. I am struggling to find the Honey Bee. The sweetness is tarnished with worry and dread. I have some moments of real excitement and many moments of debilitating fear. I have come to the realization that there is room for all of these emotions, but going through them all is a daily workout. As I have entered my second trimester I seem to be calming down a little, but I know that come the third trimester, based on my past experience with Stillbirth, the anxiety will start to rise again. As a bereaved mother, I know there is no “safe zone” and have come to meet so many incredible parents who have lost their beloved babies at all different stages of pregnancy and infancy. So while I have my own traumatic experience to shoulder, I also have the knowledge of so, so many others. I am trying to be patient with myself and attempt to stay in the moment, versus getting swept up in the trauma of the past or the fears of what could go wrong in the future. I guess I need to reclaim the idea of the Honey Bee as my own- as a bereaved mother. Mathilda was my blissful pregnancy- the sweetness was pure and overflowing. That is no longer an option for me after burying my first child. The weight of that experience is one I will always carry, just like I will always carry my love for Mathilda. The loss of her is like the sting of the Honey Bee, painful and leaving behind a barbed stinger. Now that I know that pain, the honey can never be as sweet, but I can still try to appreciate its beauty and wonder. Not every bee stings us and not every pregnancy ends in death and devastation. That’s what I have to try and focus on. One of my doctors recently said to me, ‘Prepare to bring home a baby this time’ and while I am trying to believe it, I can’t help but think about all the things we did instead of bringing home a baby- writing her graveside service, her obituary, making those final plans, trying to stop the milk from coming in, figuring out who this new person was staring back at me in the mirror- the heartbreaking list goes on and on. So while YES, I am 100% a mother, and a darn good one to our Tillie, there is so much I don’t know about being a mother to a living baby. Maybe that is where I will finally be able to find the sweetness of the Honey Bee. Maybe for me, this time, I will find it after I give birth, instead of before. I would happily trade 40 weeks of sweetness for a lifetime with my sweet girl. Of course, it doesn’t work this way- if it did, there wouldn’t be any such thing as a bereaved mother. I know I don’t get to choose- all I can do is try to embrace the sweet when I can and tend to the stings as they come. As I write this I am 9 ½ weeks pregnant with our second child. Our first child died last March, shortly before her birth at 40 ½ weeks- our beautiful daughter, Mathilda- Tillie for short, was born still. My longing for her is threaded through my entire life so why would this subsequent pregnancy be any different? That part actually feels normal, in this past year of grieving our sweet girl I have learned to carry that longing and the weight of it suits me fine. Sometimes it is still crushing but it feels right, it’s mine; it’s hers; it belongs to us.
What I am struggling with is the guilt. Not the guilt of being pregnant because that was its own difficult journey of secondary infertility, invasive tests, fertility drugs and ultimately intrauterine insemination (IUI). No, what I feel guilty about is that I am surviving the loss of my daughter when she couldn’t survive and I couldn’t help her survive. I feel like I am betraying her in some ways by trying to give her a little sibling. I know that I am not, but it feels that way sometimes. I miss and love her AND still have a deep desire for a living child. This feeling of betrayal is one that I can’t seem to shake. I also feel guilty for even beginning to talk about these feelings. So many Moms in the loss community cannot or choose not to try for a subsequent pregnancy, so who am I to even discuss the difficulties of it all? The truth is either choice, to try again or to not, takes an enormous amount of courage. In the spirit of that courage, I am going to try and speak to my own experience in this subsequent pregnancy, regardless of the guilt. I am terrified. After a year in the loss world I have come to know some incredible loss parents and the stories of the children they have tragically lost. The by-product of this is that I am now aware of an infinite number of ways that babies die and the multiple losses that people endure. Now that I am pregnant again, I find myself over analytical of my body and my experience. Anytime I can’t feel a pregnancy symptom I am stressed that something is wrong. I embrace the nausea, the breast pain, the bloating—it helps me feel like everything is okay. This self-analysis is non-stop and exhausting- the worry is intense and doesn’t even give me a break when I am sleeping, my dreams are filled with anxiety. Pregnant women and babies still really upset me. Yes, I am pregnant and I wanted nothing more than to become pregnant again, but that doesn’t mean I feel remotely secure. I also have a really hard time with the word “congratulations”. I just don’t feel like there is anything to congratulate yet, even with the secondary infertility. My only experience with pregnancy ended in death and devastation. I just can’t bring myself to believe that this will end well. I hope and wish with every fiber of my being that I will be able to bring this baby home, alive and well in my arms- but I won’t believe it until it happens. I still have a lot of anger and resentment towards those who are pregnant or toting babies around. It makes me feel like a hypocrite and that I don’t belong in any group. I’m not just a loss mom anymore, and while I still don’t have any living children, I am now pregnant so it complicates everything. I of course will always be a bereaved mother who is welcome in that community, but I just feel a little like a traitor now that I am pregnant. I am definitely not a “normal” pregnant woman and as I (hopefully) get bigger and start to show, I know all of those innocent questions from people will get some uncomfortable answers, but this is not my first- and while I am excited, I am also terrified. I have to give those answers because lying feels way worse and I can’t feel bad about making people uncomfortable for a minute or two when I carry this every moment of every day. I just wish I could live in a bubble until this baby (hopefully) comes. I am excited. I’m excited in spite of myself and my experience. I am trying to connect with this new babe and make space. I sometimes feel joy and enthusiasm about what my life could be if this baby lives and that feels really strange. That’s when the betrayal ebbs back in -- but I know how much I love my sweet Tillie. Nothing will ever change that. She will always be our first child and if we’re lucky enough to give her living siblings, they will know about her, celebrate her and incorporate her in their lives too. I guess the most important thing that I keep trying to remind myself is that there is room for all of it. The fear that this baby will die too; the worry of leaving Tillie behind in some way; the hope that this baby could open my heart and my world again; the guilt of expressing these feelings when not everyone gets or wants to try for a subsequent pregnancy. I have room for all of these emotions and they can co-exist. When I remember that—I feel a little better. So for now, in this crazy limbo space, I will try to keep that as my mantra- ‘There is room for all of it’. Within the dark world of pregnancy and infant loss, Emily Long is a beacon. Her work lets grieving parents like us know that we are not alone as we wrestle with ourselves and our lives without the children we yearn to hold. Darcie and I are so grateful for Emily's work. Without her, I don't think that we would be where we are today. In a time when resources for fathers of loss are sadly sparse, I am honored to have contributed to Emily's new book, From Father to Father: Letters From Loss Dad to Loss Dad. I wanted to share this today, the day that Mathilda would have been 10 months old, especially while we are fundraising to provide From Father to Father and Angela Miller's You Are the Mother of All Mothers to parents devastated by stillbirth at The Elliot Hospital in Manchester, New Hampshire, in the year following Mathilda's first birthday. Both of these books are resources that every bereaved parent should have access to in order to feel connected to their parenthood, to feel support, and to survive. You can read my letter, a sample from Emily's important book, below: Oh, You Brave, Brave Father, From the bottom of my heart, I want you to know that you are not alone. While there are so few people in the world who can truly understand your devastation, I do. We do, and we are here for you. In the days, weeks, months, and years to come, you may hear some say, “Don’t worry. You’ll have another baby.” I know they don’t understand. They can’t. For them, it is impossible to comprehend the crippling scope of all that you’ve lost. You lost the comfort of coming home to your cooing baby and her glowing mother. You lost the weight of her in your arms. You lost the joy of watching his first steps and the thrill of his first words. You lost lullabies and bedtime stories. You lost play dates and playgrounds. You lost temper tantrums, tender moments, and sweet little toes. You lost first days of school and summer vacations. You lost tee ball games and field trips and parent-teacher conferences. You lost first dates, birthdays, holidays, and graduations. You lost their incredible talent, their fiery spirit, their brilliant mind, their sensitive heart. You lost your hopes and dreams for who your precious baby could become. You lost your role as teacher, caretaker, provider, and protector. You lost a part of yourself. You lost your future. In March of 2016, we lost our sweet daughter, Mathilda, shortly before her birth at 40 weeks and 4 days. For me, every day remains a labyrinth of worry and wonder and where to go next. These are endless empty days, all full of quiet and stillness where there should be a cacophony and constant motion. I am perpetually engulfed by the burning awareness of how different my life should be. To think that I could have anything of value to offer you feels arrogant and heavy. However, there are some things I’ve been told that I think you should know. You are a father. More than that, you are the strongest and most courageous kind of father. You love and nurture a baby you can never hold. You did nothing wrong. This is not your fault. There is nothing you could have done to save your child. Your grief is normal. If you have a hat your baby wore and you want to kiss it goodnight, do it. If you want to stare in the sky and tell them about your day, go for it. Read them stories. Preserve their nursery. Plant flowers and build a birdhouse for them. Honor them in any way that fills your soul. Nobody can tell you how to parent your dead child. Nobody can judge your grief. Be patient with yourself and your baby’s mother. There is no timetable for grief. There is no getting over so devastating a loss. All you can do is learn to live with it. Like any weight, it may get lighter the longer you lift it, but it will always be yours to carry. My darling Mathilda was arrestingly beautiful, just like her mother. She had her mom’s hands, but she had my skin. She had my hair, but she had her mom’s nose. She was our sweet Peanut, our first daughter and our only child. The days and months since we lost her have been the darkest of my life. The only light that I’ve found has been in the belief that she is the energy that drives all of the wonder in the world. She is the sun that warms my skin and she’s the snow in my hair. She’s the waves that crash, the breeze that cools, and the rains that bring life. She’s the leaves that fall and she’s the sand between my toes. She is every bird song, every butterfly, and every rainbow. She fills my world with all of the beauty she can muster, and I find her in that. I find her everywhere I can. You are an intrepid father, loyal and true. In time, I hope that you can find some of what you lost. In hope and solidarity, Jonathan, Mathilda’s Daddy Born Still on March 4th , 2016 Originally published on Still Standing Magazine http://stillstandingmag.com/2016/10/im-so-happy-for-you/ Photo Credit: Greg Saulmon, https://birdsdowntown.wordpress.com/ I’m so happy for you! But, I’m not. I am the kind of person (or I used to be) who could be genuinely happy for you, for your pregnancy, for your new baby and your cute child. Now, I am the kind of person who bubbles with anger and loathes you for your blissful happiness, which may not even be your situation. We know the statistics. So many parents go through some sort of baby loss, but I just don’t have it in me to assume that you could know or relate or even care enough to imagine what my husband and I have been through since losing our daughter, our only child, shortly before we gave birth to her at 40 weeks and four days. I know it isn’t pretty – to see the glowing pregnant woman or new parents cooing over their baby and feel my blood boiling with jealousy and anger. I know it isn’t good for me. I can’t help it. It makes me so sad to have these visceral reactions that feel so out of character. I am trying; I really am trying to process our loss and have the strength to separate her from other babies and little girls in the world. But I see you and I can’t help but wonder, why me and not you? I wouldn’t wish a baby’s death on anyone; it is a traumatic loss that irrevocably changes who you are. We all signed up to be forever changed as parents; just those of us in the baby loss community were changed in ways we could have never imagined. The amazing thing is that every single one of us would do it all again to have just a few more moments with our babies. I certainly would. But even with that said, I do wonder why? Not just “Why me?” but most of the time ‘Why not you?’ How did these other people manage to keep their baby? Even when I saw baby loons with their parents this summer, I couldn’t help but think, ‘Even loons can do it.’ This thing that appears to be so easy for everyone else, all the people and animals I look at and think, ‘What makes you more deserving?’ I know it doesn’t work that way, but it does in my irrational, reactive mind. So, why admit all of this – this inner ugliness? I guess because I am asking for patience. I am asking for your patience. I am hoping to get to a place where I can be happy for you. Until then, I just need to kind of hate you. Hate is such a strong word, but what I feel is bigger than hate. It is such a deep jealousy and sadness unlike anything I have ever experienced that I fear there is not a word for what I feel toward you – my neighbors who have a sweet little girl, maybe six months older than my daughter should be; the car I drive by on my block with the ‘baby on board’ sticker; my best friend who is pregnant after fertility struggles of her own – I want to be happy for you. I am trying. But ‘happy’ feels so far away from where I exist now. I guess the best I can hope for right now is to not ‘hate’ you. I just don’t know how to do that yet. All I can say to the pregnant women I know is, “Good luck.” To those of you who have healthy babies, I am sorry I have to unfollow you on facebook and avoid the places you go. To my friends with amazing little babies, I will meet your children someday, I hope. For now, I just have to mourn that, too; my relationship with your children, my friendship with you, the amazing time in our lives that we should be sharing. I don’t get to be in that place with you. So, I mourn it all. I mourn my Mathilda. I mourn our babies growing up together. I mourn myself, that happy-go-lucky person I used to be. I mourn happiness. I am finding other states of being. So, if you can’t wait for me and offer me your patience, there’s not much I can do about that, and I understand. It’s been a little over 7 months since we lost our everything, our baby girl. I could never have imagined what this journey would be, and it is so different for all of us in the baby loss world. The journey continues to shift and change, just as I do. All I can hope for is to find my way back to some version of happy. If not for you, then at least for me. Written by Darcie |
Darcie & JonathanLovebirds in Loss. Archives
April 2018
Categories |