The Ugly Brown Chair

I’ve been spending a lot of time resting in this ugly brown chair as I recover from surgery; it’s the only place I can get comfortable.  As I sat there last night, trying to sleep, I had a vivid flashback to the other times I would sleep in this chair. 

We bought this chair almost 6 years ago now. After we found out we were having twins, I knew I needed a big comfy chair because I pictured myself spending hours rocking and feeding two babies. We went to the store to pick one out and I remember not caring at all what it looked like but knowing that it needed to have wide, soft arms. I sat in the showroom of the store with my growing belly and put my arms up as if I was holding the babies and thought, “this will be perfect”. 

Before I knew it, the chair wasn’t needed anymore as the babies had come into this world too early and now Mary was gone.  There was now only one baby and he was stuck in the NICU.  The months that followed their birth, I reluctantly ended up in the chair.  I slept in the chair many nights as I set my pumping station up there. Without a baby home to feed all night, I would still be up pumping every couple hours and calling the NICU. I would lay in the chair wide awake at 4 am and stare out the window wondering how this was our life.  I wondered how anything would ever be ok again.  I cried. Oh, there were so many tears shed in that chair.  

Today, there is pain in my belly from a missing organ.  Five and a half years ago there was pain in my belly from my missing babies.  Although no physical wound then, the pain now is nothing compared to that.  

I’ve realized most of my worst nights have been spent in the ugly brown chair. There have been many nights of pain, both physical and emotional. When Walter came home from the NICU, I spent the first few weeks sleeping in this chair in his room since the line from his oxygen tank wouldn’t stretch far enough for him to be in any other room.  I’ve stayed up in the chair with a sick baby propped up on my chest all night. And now I sit here as my kids try to gently snuggle with me and help bring me snacks.  This chair has seen a lot of pain but also a lot of recovery... a lot of hurt but a lot of love.  So. Much. Love. 

Infertility... Again

I had expected it since we walked through our journey of infertility to get pregnant the first time, but dealing with infertility after losing our daughter seemed extra cruel. Although I anticipated we would probably have to go through fertility treatments again once we were ready to conceive after Mary died, a part of me thought that surely we would get a free pass. Surely things had to be easier this time because we’ve already experienced the worst pain we could ever imagine when our daughter died. There’s no way the added stress/disappointment/sadness of infertility could be added onto that.

Just yesterday I was going through photos on my phone and found countless quotes and verses that I had saved to stay positive and to help give me strength during those horrible days. Yes, we had walked that path before– the waiting, the hope, the disappointment, then doing it all over again every month. Somehow, looking back, our first infertility experience wasn’t as tough. Although sometimes bleak, there was still hope and promise for an incredible outcome. Facing infertility after loss is a very different story.

Our hearts have already been broken more than we ever thought possible and each new cycle is a new little tear in a heart that is barely being held together. The whole struggle is extra hard after loss because, well, a big part of us knows that getting a positive test does not mean we get a baby to keep at the end of it all. But don’t we deserve a chance? Don’t we deserve to feel that life growing inside of us again…just to be filled with life again? As much as we may have been destroyed by loss, we would do it all over again for a chance at that incredible love that exists only between mother and child.

As devastating as it is, facing infertility after loss is the ultimate declaration of bravery and of love for all of your children. You have had your heart broken before, yet you continue to endure the pain every month because you know that it’s worth it. You know that the mother’s love you have in your heart needs another child here on this earth to pour into. That is one of the bravest things any woman can do.

Choosing To Embrace The Now

I have spent most of the last 2.5 years wanting to go forward or back in time. I was living in the past; wanting to go back to before Mary died, before our world crashed down. I was living in the future; I wanted to move, I wanted another baby, I wanted a lot to change because I didn’t like where I was. What I wasn’t doing was being present, therefore I couldn’t help how low I was feeling.

Since our rainbow has arrived, I have slowly and consciously been able to start to bring more focus to the now. In that, I have found a slightly new sense of peace.

What is my “now”? I am the mother of micro preemie twins (one that fought so hard and is here with us and another that fought so hard and is in heaven) and a sweet baby boy. That is my life right now no matter how much I would like to change that. No matter how many times I replay those days and weeks leading up to Mary’s death, I can’t change it. I can’t continue to live in the regret of all the things I would’ve done differently. Missing her hurts and it will continue to hurt. I know that won’t change. It will hurt and my heart will be incomplete until I’m with her again. I have learned to accept that as our now and live with it.

Focusing on what I have and the family we are now has helped tremendously to lighten my heart. I know that however I say this it’s not going to come out right, but I really think I’m doing ok. Of course, I get sad thinking about all of the things we’ve missed getting to experience with Mary. When I focus on right now… Right this moment I have a sleeping toddler on my lap and a little baby falling asleep and I close my eyes and feel Mary here. When I stop thinking about what I want next or what I wanted then and I focus on right this moment…I feel her light, her spirit, her strength and her beauty and I’m ok.

Feeling Less

After losing my daughter and learning how to parent her surviving twin, I just felt like less of a mother. I was supposed to be a mother of two. I felt like I couldn’t quite connect with my son how I envisioned I would. I felt less present than I should’ve been. I felt less useful. I felt less alive.

In those early days and months, I was still in such a fog that I felt like less of a mother and less of a wife. I couldn’t quite function. I was going through the motions and that wasn’t enough for any of us…but it had to be because that was all I had. My household duties just didn’t get done. Our house was a mess; our life was a mess. As time passed, I was slowly able to function more normally but that feeling of “less” never really went away. Before giving birth to my sweet babies, I had so many visions of what kind of mom I would be. I would be so tuned in to their every want and every need. I would get us all dressed and take them on play dates and still have a connection to the outside world. None of that happened and I not only lost my daughter but I lost the kind of mother I wanted to be or thought I could be. As someone who had always tried to be the best and do my best, this new feeling of less was very new and rather sad.

I not only felt like I was less of the person I used to be or wanted to be but I also just had fewer feelings. I used to be so empathetic and understanding and kind. I could no longer bring myself to feel sorry for someone who hated her job or someone who lost her cat. The idea that someone else’s trivial plight was so hard on them just made me annoyed and bitter. They have no idea. Their lives will continue with little change and my whole world and everything I dreamed of and everything I was is now gone.

When I was pregnant with our rainbow baby this worried me a bit. Would I be able to really connect with him and love him the way I should? Did I even have that in me anymore? I did have a lot of fear that I just wasn’t capable of the type of connection he deserved. However, with every ultrasound and every kick, my love for him only grew. I found my heart starting to loosen the negativity that had been so tightly wrapped around it since Mary died. I found a light starting to come back into my heart and into our lives. I’m sure I could’ve done more to make this happen faster but, as I said before, I just felt less in control of my life and my emotions. It was something that, thank God, just happened naturally. I allowed myself to feel all the feelings I needed to and that got me to the point of joyfully and lovingly welcoming our rainbow baby into this world knowing that he has an incredible big sister watching over him.

So, I guess there is really no way to control how you feel or what you feel and you shouldn’t have to. I found that just allowing myself to feel mad, annoyed, bitter, apathetic, less or nothing at all was ok. But when it came down to it, this insane love has always been there in my ever-changing heart and that has carried me through losing our daughter, raising her twin brother and welcoming our rainbow.

Fear of Forgetting

After I got pregnant with my rainbow I was presented with this new fear– the fear of forgetting. Now, this fear was two-fold. It was the fear that, with this new baby, people would begin to forget about Mary; they’d forget that we were still hurting. They’d forget that our family was still incomplete. However, I was not just afraid that others would forget. There was a part of me that was afraid I would forget.

I know it’s absurd because there’s really no way I could ever forget about that perfect beautiful girl that I gave birth to, but I was afraid of forgetting the details. I was afraid that her perfect teeny tiny feet would become a distant memory once I saw my newborn son’s feet and was able to watch them grow. There was a fear that after kissing my son every day, I would forget what those final kisses with my daughter felt like. Her dimpled chin and her itty bitty fingers wouldn’t be as vivid after I felt my son grab my fingers or after I wiped milk from his chin. I don’t want to forget those things. I don’t want to forget anything about her. I just wasn’t sure that the front of my mind could hold all of these memories and images.

The fear also came when thinking about friends and family forgetting about her. Would they remember to consider us a family of five now? Would everyone think that our hearts were magically healed now because we have a new baby? Would they forget to ask about her or say her name? It is difficult because I can’t control what other people do/say but what I can do is continue to remind them. I can continue to include her as part of our family. I can continue to talk about how we as a family are grieving now.

Now that my son has been here for a few months, I can say that the part about me forgetting is…complicated. Mary is not forgotten or far from my heart. She is always a part of my day and part of our lives. However, as painful as it is to say this, she isn’t in my every thought anymore. Instead of the pain of losing her overcoming everything I do, it is a bit further away now. It doesn’t consume me or haunt me, but it lives within me in a nice little pocket built just for her. The pain is always there, her memory is always there and her life is always there. I could never ever forget it but it has made its way deeper into my brain and my heart and not necessarily at the front of my mind daily. And I think I’m ok with that.

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.