Infant Loss Rememberance Day

A few weeks ago it was infant loss remembrance day.  As the days and weeks bring us closer to November and closer to Thanksgiving, I can feel my mood start to change.  I can feel it in myself, and I can see it in my husband and I can see it in my son too.  November 26^th was the day my daughter was born.  It was also the day she died. 

Stillbirth is a different loss than any other.  I often think about those differences.  Its not that the differences make it any easier of harder.  All I can say is that stillbirth is its own sort of grief and its so very hard to describe.  Normally, I suppose that when you lose someone, you mark their birthday.  You can find some comfort in recalling happy memories that you had with that person.  And hopefully, other people remember too.  With stillbirth it’s not that way.  Her birthday is the day of her death.  Her birthday is the day of my worst nightmare.  A nightmare that I had to live through and I nightmare that I don’t wish to revisit (although I do all too often.)   With stillbirth, you get only moments to hold one of the most important people that you will ever know, and you have a lifetime of empty memories that fill your head.  You think about every milestone, every smile, and every little accomplishment that you never ever got to see.  I have a dream all the time.  It starts the moment the nurse took her out of my arms and walked out the door.  In my dream, I realize that I need more time.  I realize that what she is taking away is a piece of my heart.  And I know in this dream that that hole will never be filled and that I will spend every day dealing with that emptiness, so in the dream I go after her.  I follow her down the hall and take my beautiful daughter wrapped in her pink cable knit blanket, back into my arms.  In the dream, I feel her weight, I feel softness of her blanket, but most importantly I feel something that I have never felt in these past 2 years…I feel completely and utterly whole. 

I am not saying that after 2 years I don’t feel joy.  I’m not saying that each day is a black void of nothingness although I remember the days when this was true.  I’m only saying that the emptiness is something that you learn to live with, or live around.  Not everyone understands this.  Maybe it’s because she was only on this earth a short time.  Maybe it’s because for 9 months only I felt her and thought about her every waking moment.  Maybe it’s because in reality nobody knew her but me.  Maybe she doesn’t feel real to them because they never saw her smile, or made any memories with her….neither did I.  But that’s the emptiness I’m trying to explain.   When the nurse took her away, that’s what I was left with…. An emptiness. A permanent lack.  A depravation.  So when people look at me now, two years later, and they see my baby son and they say things like “See, it all worked out”,  it shocks me into silence.  It is incomprehensible that they don’t understand that nothing about that situation will ever “work out”.  They don’t know that she crosses my mind all day long in the same way that my living children do when we are apart.  They don’t know that there is a permanent emptiness in my arms even when I’m holding my living baby.  They don’t know that although feeling and joy has come back into my life, there is a numb space in my heart that cannot be reached by anything.  All I can think to ask is which of their children I could take away and replace with another, but I never do.  I just smile and wish I could be as happily ignorant.

So, I think an infant remembrance day is a good thing.  It is a day to acknowledge that is not quite as painful as the exact day your worst nightmare came true.  It is a day to let people that you know who have lost an infant, know that you remember.  That even though maybe you didn’t hold that baby, or see that sweet smile, you understand that their loss is as real as any other.  It’s a day to reach out and say that you recognize that she lives her life with loss every day.   I know, and maybe you can understand a little too that a lack of memories doesn’t make her any less “real”….she was 5 pounds and 3 oz..  She had her brother’s exact chin.  She had the same huge arches that my feet have.   She had a perfect little black crib, full of baby shower gifts, and a loving big brother waiting for her at home.   She was and is my beautiful perfect baby daughter, and nothing in this world will ever fill up the lifetime of empty memories or the hole in my soul that was created the moment they took her from my arms forever. 

Today was one of those days.  It’s not that it’s totally unexpected.  It’s just that you can be doing the same thing, having the same thoughts and in the same sort of situation that you face all the time and have learned to handle easily, but somehow one little thing will happen and tear every defense you have down.  And it happens in a split second.  You see, I am doing okay.  Most all of the time I can hold it together.  By now, I can even shop for my presents for my friends who are having girls.  I have gotten to the point where I can be excited for them.  I remember not that long ago that I too was shopping for pink outfits and bows and little shoes… and I can do it again while remembering the happiness of expecting my daughter and not just the pain of losing her.  But today it was a number that punched me right in the gut.  All I was doing was taking Lewis into the bathroom to change him and there was a young mother changing her tiny little sleeping newborn.  She was beautiful and I couldn't help but admire her as I held my own baby who looked so huge in comparison.  The other women in the bathroom were admiring the baby too and taking turns asking questions as the mom was struggling with all the clothes and accessories that come with a newborn.  Whats her name?  How old is she?  She is so tiny!  How much does she weigh?  Mom dutifully answered all the questions.  “Ella”  “Two weeks”  “6 pounds, but when she was born she weighed 5 pounds and 3 ounces because she was 5 weeks early” she said as she finished putting her things in her bag and cradled her little baby to her shoulder.

I looked at the little baby peeking at me through sleepy eyes over moms shoulder.  “She is beautiful” I said, already feeling the tears stinging my eyes.  All I could hear was that weight “5 pounds 3 ounces” ringing in my ears.  My daughter was 5 weeks early.  She weighed 5 pounds 3 ounces.  I have spent so many months… nearly years now, consciously pushing the “what ifs” out of my mind.  I've trained myself to never, never even start with the thought….but here it was.  The “what if”… What if the ultrasound had seen the cord around her neck?  Remember when I said I just didn't feel right.  What if somehow I’d noticed before?  What if something, anything could have been done?  All those “what if’s” were peering at me with those sweet little sleepy new born eyes and all I could do was lay Lewis on the table, cover my eyes and cry.

New beginnings

So it’s been a very long time since I have written on my blog…..and there are so many reasons for that that it’s hard to even start to explain.  The biggest reason though is probably the most important to explain and is the hardest.  After our daughter’s death, we felt such an outpouring of love and support.  It was truly incredible.  Looking back at my blog entries, I can still feel the emotions and the heaviness that was in my heart.  I remember the awful emptiness but also that I never felt alone.  In those weeks after, I always felt the loving presence of my friends.  I felt their prayers, and most of all I felt close to Jesus with his spirit and strength flowing through me.

But a few months later, around when I stopped writing, I started to feel empty. Those connections were gone.   It was a kind of emptiness that I didn’t want to talk about with anyone.   It was an emptiness that couldn’t be filled by friends, by activity, by love and… much to my fear….even couldn’t be filled by prayer.  It wasn’t that I didn’t try all those things.  I pushed myself to be with others, to join in, and to talk about her even when I didn’t really want to.  It wasn’t that I even felt bad.  I could do everything that I had ever done before that terrible tragedy befell us, but I was like a robot.  I was going through the motions.  The only way that I could describe it to my husband, who is the only person I really discussed it with, was that I felt someone had turned down the volume on my life.   Everything was still there, but the joy was so muted that to me, I was unrecognizable.  It scared me.  The only thing that helped was that my husband felt it too.  He described it as being in a desert.   Just feeling nothing.

And to my horror, that muted, nothing feeling extended to my relationship with God.  I would pray,  I went to church,  I read scripture, but it was like the words bypassed all emotions and when straight into that black empty pit.  I tried so hard to focus but it was like sand through my hands and at times I felt almost desperate.  I never felt like God turned his back on me though.  There was just a void that I couldn’t bridge and I still don’t know why.  I just know that I always tried to remember that God knows what is in my heart.  He knew that I was longing to be close to him and all I could do is pray that he would open up a new path for me.

And in June I found out that I was pregnant again.

It was something we had hoped for… had actively tried for, but the reality of it that morning staring at the test strip brought me to my knees.  I had no idea what I would face, how I would feel, and how…maybe even if…. I could ever manage.  I have the perspective now of hindsight, with my baby son sleeping peacefully in the next room as I write, but those early days were tough.  I didn’t tell anyone for sure because I was not ready for their reactions and I wanted to be ready, to have down exactly what I wanted and needed from them ready to say.  So, I just existed.  I didn’t do a lot of hoping or dreaming, I just made it through each day and counted down the day until each bloodwork result, until each ultrasound.  And with each test, came encouraging news.  I knew that nobody could tell me the end result.  There was no crystal ball that could show me what my life would be nine months from that point so I just clung onto each piece of evidence of a successful pregnancy and looked no further.

And each night, I asked for God to give me strength and I thanked him…literally thanked him each day for the emotional pain that I knew I would I have to endure because the alternative…of never having another chance to bring life into the world…. To expand my family…. To show my son that a baby coming into the world doesn’t always bring the awful pain that he endured… was much, much worse than any pain that this wonderful and awful period in my life could ever bring. 

So how have I been?  Well, I haven’t written anything in several weeks.  Daily life has picked back up so much, but the real reason is that I feel like I have nothing to say.  Well, maybe not nothing to say, but no way to describe the differences that have settled into my life.  Into my person.  Sure, there are still those moments of grief that take me by surprise.  Like the other day at my in-laws.  It was a family dinner for my husband, and to tell the truth I had forgotten most of the reason why I was reluctant to go, so when my husband suddenly changed his plans and decided to stop by, I was not any more hesitant than usual.  As soon as we walked in though, I saw my sister in law pulling her son out of his highchair, and as she turned around, her mother leaned in to tickle the baby’s feet.  And that was it.  All of a sudden I couldn’t breathe.  The room started spinning and I just got up and walked out the door.  I had not laid eyes on the baby since the day he was born…two weeks before my daughter…  The sudden realization that that should be me, holding my baby, hit me so hard, but what hit me even harder is that nobody in that room even remembers.

From what I understand, these types of sudden outbursts of grief will continue out of nowhere for forever.

In my everyday life I am okay.  I get up every day.  I go to work.  I go to church.  I see my pregnant friends.  I pick up people’s babies.  Well, I make myself do it.  It is a struggle.  It is a constant battle of forcing myself to do what I know I should do, but inside it doesn’t feel right or okay.  To be perfectly honest, I spend a lot of time dreaming of running away.  Moving to a new town where nobody knows me and never talking to any of my friends or family again.  Why does that sound like such a promising solution to me?  I truly have no idea.  These are the very people that have loved and supported me in such a time of need.  Maybe so I wouldn’t feel so guilty about wondering “why me?” a thousand times a day.  I mean, I had a perfectly healthy full term baby.  I had no medical conditions, engaged in no risky behaviors….nothing…but my baby died for no other reason than her movements somehow got her so tangled in her own umbilical cord that she had no chance to be born.  Sometimes I have this daydream where I imagine myself in a dim room with a bunch of other pregnant women and everyone is talking quietly and there is an uneasy feeling and then all of a sudden out of nowhere, this spotlight lands on me.  Me.  Out of all the hundreds of other women in the room, it’s me.  I know immediately what it means.   And I want to scream no.  I want it to move to someone else, but I can’t, I couldn’t…. I wouldn’t but…why me?  Really it mimics what my son said to me the other day.  He was asking about someone who was pregnant and said “will her baby die?”  I told him no.  That only sometimes do babies die and that it is very uncommon, so to reinforce this we named off fifteen or so people we know including him, and I reminded them that they were all babies once and that they all lived.  He thought for a moment and then tilted his head and looked at me.  “So pretty much only our baby died.”  With every ounce of my being I wanted to yell “Yes!  That’s right.  Just ours!  God knows why, but every single other person I know is busy holding their babies and ours will never ever be here with us.”  So, I guess I feel like a 3 year old that just can’t understand why, but with the guilt of an adult who knows that you can’t ask for it to be someone else.

Most of my days I can handle the fact that I had a daughter who was stillborn. I can say it, I can remember it and I can look forward to the fact that I will see her again. I can answer my son’s questions, and validate his thoughts when he brings her up. I can be strong for him. I can be strong for myself. The funny thing is that lately when I have told people that things are much better most are happy for me and glad for our healing and the strength that God has given. Often though, when I express that thought, someone will say to me or email me to remind me that “Grief is like that. One day you will feel better, but then you will feel worse again.” Or, my favorite, “It’s not over yet”. I just nod my head and smile, but inside my brain is screaming “Do you not think I know this?” Like I don’t know that there are and will always be days when the pain of losing her washes over me like a wave, ripping off any protection that I have built up against that hurt. And the reality is that for my whole life this will continue to happen. That is why there is no such thing as “getting over it”. There is only healing and moving forward, but never getting to a place where grief cannot reach out and grip your heart.

Last week was one of those good moments when I can hold it together. I was in the grocery store with my son and then for no reason at all, in the middle of the pasta, he looked up at me and said “I still miss my baby sister.” He told me of how he wished he could feed her baby food and push her stroller and then he showed me what he thought happened when she died by making a cartoonish last gasp and falling backwards onto the floor. So with people all walking past us, I bent down and talked to him. I didn’t want to whisper because I don’t want him to ever feel discomfort or shame talking about her, so in a normal voice I reassured him that she didn’t die like that and reminded him that he saw her and that she was peaceful and beautiful. He looked up at me from my makeshift lap squatting down in the aisle and said “I want to have another one that will come home and live with us”. I hugged him and we stood up and carried on to the checkout. That day I did it.

The next day was Ash Wednesday, and as our reverend spoke on his meditation about “storing your treasures in Heaven” I couldn’t help but think about my treasure, stored for me, so I just looked up at the ceiling and tried to delay the tears from coming, and as I walked up to receive my ashen cross I continued to stop them. I made it until I picked my son up in the nursery and he kept demanding to know what the cross was for and wanted me to make one for him so I did and while buckling him into his car seat I said that the cross reminds us all that we will someday die and go to Jesus. He nodded in agreement and then opened his arms wide saying with all the enthusiasm in the world “And I will say ‘Baby Sister, I am SO HAPPY to see you’”! It was then that I did lose it. The covering that builds up each day as I focus on life and living and on loving and on the good parts of what I shared with my daughter was ripped off. I laid my head on his lap and cried.

It’s like most of the time; the true reality of what we have lost doesn’t always sink in. I feel like my son sometimes when he thinks she might just show up anyway…. Sometimes I feel like this loss will soften, like there is some end to it, but these times bring the reality quickly. I will live my whole with this. I can look at babies and play with them. I can see baby clothes and be okay, but one day I heard a baby cry and I had to excuse myself from the room. The stark contrast between that living child and the silence that filled the room when my own daughter was born with no movement…no sound, was too much for me.

And this will be my life. Some days I know I can handle it. Some days I think I’ll never make it down this path put before me carrying that burden. I know, though, that I have no choice and that all my life I will have times where grief overcomes me. It’s a reality I can’t escape and I truly no one should worry that I will forget it. I won’t.

If you haven’t met me, let me introduce myself. I am a type A personality. At least I think so. I don’t know a lot about personalities, but from what I hear, that’s probably me although over the years I have softened….a lot. I was talking to my counselor about it the other day during my visit. We were talking about the appointment my husband and I had with the high risk maternal fetal doctor. My regular OB had sent us for a consult to see what steps, if any, needed to be taken in the future, and if there were any tests they could think of to run. We had to wait for about 2 weeks to get in, and when we got there he told us what we figured he would – that after looking over 40 pages of paperwork in my chart, he found our series of unfortunate incidences and tragedy to be “bad luck” – no testing or further visits needed. It was no surprise to us at all – we were told at the hospital that the cause of our baby’s death was very clearly a cord accident that had no cause other than accidental. We were told the same by our doctor also. And now, we were being told by another doctor, but for some reason I couldn’t help feeling let down. I was really downright sad for a few days and I couldn’t figure out why. I mean, in all reality he had given us the best possible news – that we were not high risk in any way and that our chances of a healthy baby in the future was the same as any other couple trying to have a baby. Sounds good. The best news possible after what we have been through, but I realized that the best wasn’t good enough. I realized that nothing short of “everything will be fine” would make me feel any better and less afraid and that being a doctor he couldn’t say that. He told us the truth meaning that like everyone we have to face a 20 percent chance of miscarriage….a 1 percent chance of stillbirth. Those numbers might be acceptable to some – they were to us once too - but now, having been on the astronomically losing side of odds, statistics are no comfort. I guess it was just another reality check that there are no, and will be no guarantees which is just what I was discussing with my doctor, commenting on the fact that people with anxiety usually face control issues of some sort. I am no exception, but I do recognize it and have actively tried to change it. For many years, I carried the weight of the world on my shoulders. Everything from how the towels were folded to peace in Israel, I was sure would fall apart if I didn’t do it, and I am so grateful that I am not like that today. My counselor asked how that happened and as I read off a list of extraordinarily difficult situations from my college years, to my divorce, to the last four years, all of which were out of my control, she just looked at me. Then she asked “And your response to all that was to let go of control a little more each time”? It didn’t occur to me before then, but it’s true. Instead of holding on tighter, I let go. It wasn’t an innate response, but you can either allow struggle to strengthen you or defeat you, and pretending to have control when it was becoming increasingly clear that I didn’t have all that much, sure seemed like a fraud and a denial and a failure. I do have hope in the future, and my hope is in my ability to continue to trust God with the outcome.

Grief is a very hard concept to explain. It is different for all people and different for all situations. It is a process, and while it does have a definite start, it probably has no real end. The shift from unbearable, to tolerable, to…well….. to something that is just a part of you which is indiscernible from your other parts is impossible to pinpoint. I don’t know where I am on that continuum. I did realize just the other day that when I respond “good” when people ask how I am doing, I actually mean it. I have been responding “okay” or “good” to that question since the beginning because there is nothing else really to say. Even though the response is the same, the feelings behind it have shifted dramatically. When I was asked that question, the words from my mouth were forced and the pain in my heart welled up at even having to say them. Because I wasn’t good. I was consumed by grief and I realize that while it’s still there, it is no longer consuming me. My response now is focused on life and hope and thoughts of now. I think that’s a good thing. It sure feels better. It made me start thinking about how it is that that happens. I remember all too well the second by second wavering between grief and hope in the days and weeks after my daughter’s death. It is a horrible, gut wrenching existence… barely an existence at all. For a few seconds alone, you can start to put your life into some sort of perspective, but before you can get a clear image, a feeling of hope at all, that chocking wave of grief passes over your body and lands on your chest crushing you back into despair. It’s like trying to claw your way out of a hole, and getting your fingers dug into the steep sides enough to barely life your feet of the ground and then losing your grasp….over and over….tens of thousands of times a day. It seems that after even a short time of that, we would give up. The grief would win, choking the hope out of us completely, but it doesn’t.

1 Thessalonians 4:13

Brothers, we do not want you to be ignorant about those who fall asleep, or to grieve like the rest of men, who have no hope.

Psalms 34:18

The LORD is close to the brokenhearted and saves those who are crushed in spirit.

These two verses came to me many times in cards and in prayers, but I didn’t really have a place for them in my understanding. I do now. Grief would win, if we look at the situation with human eyes, but it is because of a power greater than ourselves that that seed of hope can grow. The seconds between grief and despair become minutes. Each time, we climb out of that hole just a tiny bit more before falling back. And then somehow, miraculously, you find yourself with more hope than grief, more life than defeat, and that my friends, is by the grace of God.