Learning to Parent While Learning to Grieve

Learning to parent a medically fragile baby while also learning to grieve as a bereaved parent was beyond confusing and overwhelming. I know that I am not alone in being a parent of a “twinless twin”. When my babies came into this world 15 weeks too early, we were instantly shoved into parenthood. We were terrified and unsure what this new world would look like. Unsure how to be good parents in the NICU, we were eager to listen to doctors and nurses and learn all we could. When our world crashed down two days later with our daughter’s death, we were suddenly forced into a new kind of parenthood; one of both bereavement and medical uncertainty.

Becoming a parent is a beautiful learning experience but these are not the things I wanted to learn. I didn’t want to learn about PDAs and ROP and CLD and brain bleeds and ventilator settings. I certainly didn’t want to learn about burial options and gravestone choices and memorial cards but this was my intro to parenting.

I thought I knew what kind of mother I would be and this is definitely not it. Being in the NICU while one baby fights so hard for his life after you have just watched his twin die in your arms is devastating. The fear for any parent in the NICU is huge but once you’ve seen the “worst case scenario”, that fear is exponentially greater. Each step forward was coupled with great sadness and grief and each devastating moment of loss was paired with pride of reaching new milestones. The dichotomy of these highs and lows constantly existing at the same time is so difficult to understand.

There is no way that this rocky beginning didn’t affect me as a mother. I’m constantly full of anxiety when it comes to my surviving twin’s health, “Is he ok?” “Is that normal?” “When do I take him to the doctor?” I know that a lot of first time parents have these thoughts but for us who have lived through the worst, it’s just… Different. It’s more real. The fear and anxiety is for a reason. We are walking around with fragile broken hearts and know that we can’t take another loss like that!

The three times that my son has slept through the night (he’s almost 2.5 years old), I did not welcome the extra sleep…I was terrified. Is he breathing? Is he alive? I have great anxiety being away from him or having someone else watch him (even if for a very short time). I know that these (maybe totally unfounded) feelings stem directly from having lost our daughter.

The start of our parenting journey was, well, pretty traumatizing. It changed me as a mother. It made me more fearful, more reclusive, more frantic. It has also made me pray more, appreciate more and love more.

One Piece of Advice

Someone recently asked me what my one piece of advice would be for new parents. “Crap!” I thought, “I am clearly not the person to ask about how to be a good parent.” I’m not even sure what I said to answer that question but thinking back on it now, I think I know how I’d answer. It is simply this: “This is the most important work you’ll ever do. You’ll never feel like you’re doing it right but you’ll always do your best. This is the only job that truly matters.”

I realized I was not asked how to be a “good” parent but rather what to say to a new parent. I don’t know that anyone always feels like they’re doing a great job. Sure, we have those moments where you think, “damn, I’m good” but those come less often than the moments of “where did I go wrong?”.

I think as mothers who do not get to parent all of our children here on earth, we can be much harder on ourselves. As much as we can keep telling ourselves that we didn’t fail, there’s often that little thought that can sneak in and remind us of our ultimate failure to keep all of our children. We know it’s not our fault and we did nothing wrong but still feel incomplete as a parent.

Losing my daughter has taught me what is truly important in this world. I know that I parent differently now because of her. I’m not going to worry that the high chair tray doesn’t get wiped down right after a meal. That’s not a failure. I don’t care that the laundry may sit unfolded for a few days (or maybe not even make it out of the dryer). That’s not a failure. I won’t be bothered that I had to carry my son out of the store kicking and screaming because he wanted to climb the mannequin. That’s not a failure.

Even on the days that I can get down on myself that things aren’t going right, I know that I am doing my best in that moment. Some days my best is just getting out of bed. The grief can magnify every little issue or disappointment into something huge if you let it (believe me, I have let it so many times). So my advice to parents, especially those parenting after loss, is that this is the most important work you’ll ever do. You’ll never feel like you’re doing it right but you’ll always do your best. This is the only job that truly matters.

Uninvited Hospital Guest

Although there were a few similarities– labor spontaneously started early (this time at a much later/safer gestation) and labor progressed insanely fast– I wanted everything with this labor and delivery to be different from last time.
I wanted new doctors in a new hospital.
I wanted to call family on the way to the hospital to let them know we were about to have a baby.
I wanted to feel like my baby was ready to safely enter this world.
I wanted to have a name prepared to call him when he came out.
I wanted to have the house ready and a hospital bag packed. One thing I unintentionally packed in that hospital bag was a whole lotta fear!

The thing I wasn’t expecting was that, oddly enough, there was more fear this time. Although I went into labor at exactly 25 weeks last time, I was strangely calm and not very fearful. I knew my babies would have some hardships and struggles, but the thought of death really didn’t cross my mind. Sure, I knew that there was a 50/50 chance of survival, but I wasn’t going to lose a baby. That wasn’t my story. That happens to someone else, not me. Oh, to be that naive again!

This time around, I was in the delivery room so afraid. Why? I don’t know! I guess because now I am the woman whose baby died. That is my story now. It’s my reality and it happens. It happens in the most traumatic and unexpected way. Was that going to continue to be my story? Would I be the one people say “oh, did you hear… She lost ANOTHER baby?” I now know that most awful and horrendous pain of birthing a baby you don’t get to keep…the pain of saying goodbye. I couldn’t do it again. How could I handle that? That was where the loads and loads of fear came from.

The first time around, although I should have been afraid I wasn’t because I wasn’t exactly sure what to be afraid of. This time, however, I know what every second feels like. I know the heart stopping moment when the doctor tells you the baby you created is dead. I know what the days, weeks and months following feel like and how peeling yourself out of bed is the greatest daily victory. I know the intensity of the pain and I couldn’t even imagine having to stack that onto the pain that already exists in my heart after losing my daughter two years ago.

Although this birth was clearly less traumatic, the fear hung out and slept with us (ok, I didn’t sleep, but my husband did) in the hospital. It lingered in the curtain and in the beeping of the fetal monitor. It crept through the room with the most irrational stories of freak accidents and things gone awry. That was until that final push and the doctor placing a crying baby on my chest. He’s alive and he’s here. He was ours and we can keep him. We will bring this one home! And we did! The next afternoon we brought home a new beautiful life! As disappointed as I was at myself for not keeping the fear at bay, I did my best and that is all any of us can ask for!

Rainbow Connection: 10 Things I’ve Done to Bond During PAL

I have found through the fear of this pregnancy after loss, bonding and connecting with this precious baby I’m carrying has been harder than I expected.

After recognizing my distance, I knew I had to make a change. The following are 10 ways that I flipped the switch in my mind to begin to connect with this baby:

1. I had to force myself to look at it this way: Worst case scenario and I lose this baby too… Would it hurt more if I felt disconnected to this baby or if I felt like I knew him and he knew me and we were forever bonded? That set my mind and heart on the path that I had to get to know this baby and sometimes force myself to connect with him because the pain of feeling like I neglected him at all for any of the time I was blessed to have him would just be too much.

2. I recognized that it was that fear of losing him that made me reluctant to bond with this baby. So, I had to think long and hard on what would possibly help ease my fears, even the slightest bit. One answer to that was to make sure that I had a doctor (or doctors) who just get it. Someone who would see me anytime even if my fears were irrational. Someone who knew I needed extra appointments, extra monitoring, and extra compassion. I found an incredible team of high risk doctors and they have definitely helped me to release some fears.

3. Another fear-lessening tactic was to doppler. I know some people find it causes more fear if they can’t find a heartbeat right away, but for me… some days it has been the only thing to keep my sanity. When there is no other way to know anything about baby, putting that wand up to my belly not only calmed some fears but also helped me to remember what a precious miracle and blessing I am carrying. Those heart tones belong to MY living baby. The baby we worked hard to create. I felt like I knew him better. I could hear his movements. I knew where he was. I felt connected to him.

4. Another decision I had to force myself to make was to share the news with family and friends early on. We actually ended up sharing the news of this pregnancy with our families even earlier than we did last time. I knew that their excitement and prayers would help to make it all feel real to me. Some days, especially early on, their excitement and love for this baby was contagious for me and helped me feel more positive.

5. As reluctant as I was, I made the decision that taking bump pictures through this pregnancy was important. I couldn’t get myself to do it every week but compromised to take them every-other week. I am glad I did. I love going back through my pictures and seeing my bump growing and knowing that my sweet baby was getting bigger and stronger in each picture.

6. Finding out the sex of this baby was very crucial to helping me bond with this little one. It may be the opposite for some people but for me, I want to know everything about this baby. I don’t want to miss one second of seeing him on the screen during an ultrasound. I had enough surprises with everything that happened during my last pregnancy and I do not want ANY “surprises” this time around. I needed to visualize and mentally prepare myself to hold a baby boy or a baby girl. My heart needed time as well to accept and process whichever sex this baby would be.

7. I had to make the conscious effort to take time and shop for this little one! It’s another simple thing that takes a lot of effort and overcoming a lot of fears in a pregnancy after loss. I don’t want to have to return things again or pack away the things we never got to use in a box. This baby deserves some things of his own. He deserves some sweet little outfits. As scary as it was to shop in the baby section again, it did bring me some excitement to think of my new little miracle wearing the things that I picked out just for him!

8. This may seem silly and obvious but talking, reading and singing to this precious one has been a big piece in helping me connect with him. I know it’s pretty much a “duh!” but some days it was just much easier to pretend this all wasn’t real and try to avoid the fear for a while. Making myself have a conversation with this baby not only helped me feel closer to him but helps him to know me. I want to know everything about him and I want him to know all about me. I want him to know my laugh, to know my horrible singing voice and to know just how much I love him.

9. Sharing everything with my husband and helping him to connect with our little baby has helped me connect even more. I get to feel every time baby moves and feel his hiccups but my husband does not. So, I needed to make the effort to grab his hands and help him to feel this baby; to encourage him to talk to my belly. Talking about our baby and sharing hopes/dreams/plans for him has helped us both to bond with our baby.

10. Naming this baby!! Ok, we suck at this and are having a really hard time coming up with a name. However, we are trying and having that conversation (almost daily) and thinking about what we could name him has helped us feel like we know him even more. We know what names don’t feel right for him. We think of the personality he has already shown us, we think of all the ultrasound pictures we have, we think of his relationship he’ll have with both our twins; the one in our arms and the one in our hearts.

These may not be sure-fire ways for everyone to bond and connect with their pregnancy and baby after a loss but these have been the 10 most important ways that I have found in these past 36 weeks that I could form that bond that has taken more effort than I had hoped.

A Guilty Disappointment

I am aware this may be a difficult subject and some people may not understand, but I feel compelled to share. I know that I am not alone in these feelings, as I know many other loss mamas who have been in the same boat. 

So, here it goes… When I found out the sex of this rainbow baby, I was really sad; like, pretty devastated actually. I know that it sounds absolutely horrible because I should just be grateful to have seen a healthy, living baby on that ultrasound. And I was and am so grateful for that, but something inside me just lost it. 

Two years ago when we had boy/girl twins on the way everything just felt right. It was perfect and that’s how our lives were supposed to be. We were supposed to have a boy and a girl to raise and to love. We were supposed to have mommy/daughter and father/son days. We were supposed to have tea parties and go fishing. So many of those dreams instantly shattered the day we lost Mary. I had to re-identify myself as a mom with just a son here on earth. Yes, I will always be the mom to a daughter, but she’s not here and “parenting” her is not the same. 

When we finally got pregnant again after Mary died, my husband and I were both convinced we were having a little girl. We both know that absolutely no one could ever replace her; no daughter or son will ever fill the giant void in our hearts that she left. However, our dreams of raising a little girl could be real again and we were so excited for that new experience that we missed out on. When I saw that little penis on the ultrasound screen I didn’t want to believe it. I’m not a mom to boys! My head and my heart know that I will always be a mother to a daughter as well…but physically, at the park or out shopping, I’ll look like a mom of boys. I don’t want people to say “you and your boys” because then Mary’s always left out. If we had a girl this time it would be “your babies” or “your kids” and I could assume that was including Mary. I’m also struggling with this new revelation because, well, this shit is hard! Getting pregnant has been so stressful and being pregnant and trying to keep this baby alive and well has been beyond draining physically and emotionally. I don’t know if I can do this again! Had we had a girl this time, I think we could have been done. Now, however, I feel like there’s still something else missing. Yes, our family will never be complete without Mary, but it also feels more incomplete because we haven’t been able to have the experience of raising a daughter like we planned for and dreamed of. It has been 11 weeks now since we found out and I am excited to welcome this sweet little boy. Some days it hits me harder than others that I still won’t get to use those cute bows and dresses that I have packed away. Most days I feel good and honored to be carrying this beautiful boy, and I know that he has an amazing big sister watching over him and protecting him. “Gender Disappointment” after a loss is much different from someone who was just wishing for a certain sex. It involves a lot of past emotions, broken dreams, tiny rips in an already broken heart. There’s a lot of expectation as well that we can only be happy and thankful for this growing life and we don’t want people to think that we’re not happy and thankful. We know, better than anyone, to be grateful for each and every second that we are given with these sweet babies because we’ve experienced what it feels like to have one (or more) ripped out of our lives in an instant. The sadness felt does not, in any way, diminish the joy or amazement at growing our rainbow babies, it is just an additional emotion added on to this already crazy ride of pregnancy after loss.

Our Rainbow of Hope and Fear

(Featured on Pregnancy After Loss Support)

It has not been a secret that “getting pregnant” does not come easy for us. We conceived the twins using fertility treatments and we knew that we would have the same issue if/when we decided to try again. The risk of multiples, prematurity, and neonatal death are very real to us. After living through all of it, the fear of any of that happening again was very overwhelming.

After Mary died we felt right away that we wanted another baby. I think for a lot of loss parents, that feeling creeps up pretty instantly. Sure, in the beginning it’s fairly irrational. You just want a baby back in your belly because there should still be one there! As time goes on, it becomes less of a “give me my baby back!” and more of a “help heal my heart!” desire. It’s not that we think a new baby can “replace” Mary or “fix” our struggle. However, everything in my heart and my mind is telling me that I’m supposed to have two babies here with me.

We know that without her here, our family will never be complete but at the same time… We know that we could feel a bit closer to complete than we do now. We’ll never be able to fill those memories that we didn’t get to have with Mary; her first smile, her first steps, her first words. The pain of missing every day with her is always very real. We are aware that, because we miss those so much, we long to experience those moments again, with another child.

We knew within a few months after losing Mary that we should start trying again because, like the first time, it would be a long process. After lots of appointments with specialists and consultations with high risk pregnancy doctors, we were feeling confident in our plan and their support to try again. Of course, the stress and anxiety of every failed cycle was tough. It was actually harder this time around because it just felt like, “come on, can’t we catch a break? We’ve already had to lose one baby and now we can’t even make another one!”

After a good 15-16 months, we were finally pregnant. We were ecstatic…but terrified. We now know the reality of loss and there is no such thing as a guarantee of a baby at the end of all of this. Being pregnant after loss is way more difficult than I would’ve imagined. There is no innocence left, no naïveté; just fear and hope. I sometimes just have to awkwardly laugh to myself when I see other pregnant women celebrating “V Day” or reaching the infamous 24 week “viability” mark…As if that means anything. Mary died at 25 weeks gestation and through this journey, I have met incredible mamas who have lost their babies at 28 weeks, 31 weeks, 36 weeks, 40 weeks, 41 weeks. I know there is no safety, there is no guarantee and I have been forced to see that and live that first-hand.

Every little thing in this pregnancy is filled with fear; every ache, every pain, every strange pregnancy feeling all make me want to run to the doctor. At 23 weeks, I had already had at least 10 ultrasounds and that still didn’t seem like enough. I don’t feel like I can trust my body anymore. I don’t trust that I will know if something is wrong. I don’t trust that my body can carry this baby to term. I try every day to cling to prayer and God’s promise that He will carry us through and bring this baby safely home with us. However, the doubt and the very real fear of our past repeating itself always seem to creep in. Sure, some may say that clearly my faith isn’t strong enough but after Mary died, I’ve had to rebuild a lot of that trust and belief and I am much stronger than I was almost 2 years ago.

Trying to conceive after loss and pregnancy after loss are two of the most difficult things (aside from actually losing a child) that a mother can go through. It takes an insane amount of strength, courage, desire and love. If you have found yourself in this situation currently or in the past, I commend you, mama! You are so strong! If you have not been through it personally but know someone who has or is… I beg of you, please be kind to her and recognize how much courage she has to take this chance again after what she’s gone through.

The Badge of Bereavement

I wish there was some way to distinguish a fellow loss mother in public.  There should be some sort of symbol, a badge if you will, to easily share with the world that, despite your smiling and happy demeanor, you are hurting inside.  It would be sadly but proudly worn.  It would symbolize the strength of a woman who has been through the worst kind of heartbreak, yet is still standing. 

Ok, let me set the scene.  I'm taking my son for a walk through the neighborhood and spot a cute young couple walking toward us about a block away.  Of course, I play out in my head what they're thinking/talking about and it goes something like this 
Wife: I love you!
Husband: I love you too!
Wife: Awwww, look...cute baby. I can't wait to have babies with you.
Husband: Me neither, let's have one!
Wife: ok, yay! 

And naturally, I see the rest of their story play out.  They go home and start trying and five weeks later... Positive pregnant test!

Just as I'm starting to get really annoyed, I see them see me and they quickly turn the corner.  Hmmm. 

Maybe the site of me walking around the neighborhood with a cute baby in tow hurt them.  Maybe they've been trying to get pregnant for the last year or two.  I just want to scream at them from afar, "We have tried for years to get pregnant and this one right here... is our surviving twin, my daughter died.  I know pain!"  Instantly, I flashed back to my feelings when I would see the same thing and I would've turned that corner so fast too.  I don't know why but when I have worked so hard to make a baby (or two) seeing another family with a healthy little baby just feels like a punch in the gut.  I imagine them getting pregnant on their honeymoon or worse yet... "Omg, we weren't even trying!".  Barf. 

Now having lost my much sought after, much loved and much desired daughter two days after she was born, seeing families with babies is like a double punch in the gut... And then a stab and twist with knife.  The pain I feel when I see other people's happiness is embarrassing.  I don't want to feel so awful, but I do believe that pain just comes with the territory of suffering through such an incredible heartbreak. 

However, if I know a woman is part of this (awful, yet totally supportive) club known as bereaved motherhood, I would have such a warm heart at seeing her happiness with a healthy child in her arms.  It just seems easier knowing that a woman "gets it", that she will never take one second with that child for granted, that she knows happiness through the pain, that she will always hold and kiss that baby as more than just one baby.  

This life of a bereaved mother is one that I would never wish on anyone. It is more pain than should ever be allowed in any lifetime.  However, when I know that someone else is unwillingly part of this life too, their happiness is my happiness.  

So, there's my predicament.  I don't know how to make the instant gut-punch subside when I see a woman with a baby (or super pregnant belly) unless, of course, she is wearing her badge of bereavement.