Monday, May 4, 2015

Why Expecting Twins Scares the Snot Out of Me

The first compassionate friends meeting we went to after we lost Perry, we simply weren't ready. It was less than a week after he died and we were too emotionally raw. Honestly everyone was nice, but when you are in that much pain there is not a lot anyone can do except cry with you.  It was so intense that I actually never went back, it became tied up in the early days of loss memories. Instead I actually went to a different chapter but in a city that was a similar distance from my house.

During that meeting, what stuck out to me were two similar losses. I listened most intently to them because in some ways they were similar to ours, parents simply waking up and one of their babies was gone. But they were also different in that they had surviving twins.

Later I learned that many twins are at increased risk of dying while sleeping simply because they were born earlier on average than singletons.

So when I found out I was expecting twins, I had two very different reactions to it. The first was an ironic amusement... I was so angry at having three full term pregnancies with only two children here to show for it, twins seemed like a surprise. Here I was, the poster child for early pregnancy loss, and the one time I wasn't expecting anything, it sort of hit... X2. So I certainly looked at it as a blessing, perhaps as God with a sense of humor. By most RE (reproductive endocrinologists) accounts my blood work basically shows that I should be infertile. Yet although I have had many miscarriages, I have somehow wound up with what is shaping up to be a 'larger family'. It is odd to say the least, and I feel ridiculously lucky at times (sometimes cursed for all the loss, but knowing that I do not deserve my kids). You see nobody really deserves their kids, and it makes me sad when I hear parents talk about their children like a burden or like they are doing something noble by parenting. And I know very well I have won the kiddo lottery.

The second feeling though is outright terror. Because while everyone loves to think of twins as this cute ultra lucky event, what they do not often think about are the increased risk of gestational diabetes, preE or Hellp syndrome. They do not think about the added risk to labor or about how they will likely be born early. Yes, hopefully not super early, but even 2 or 4 weeks can mean a huge difference in complications and potential outcomes with infants.

And there's that little (HUGE) sids statistic....

I watch so many twin Moms place their babies in situations where they sleep together, often with boppies or other unsafe objects, and they are so blissfully unaware. 'Don't you know your babies are already at a higher risk?' I want to shout. It seems to taunt fate. Sometimes there is simply nothing you can do, but placing babies together or in other unsafe situations starts to throw things towards preventable deaths. There are infants that have been found with fiber's of their twins pjs in their airway. What story will their Moms tell them when it comes time? Twins can bond awake... and you know what, they are two separate individuals, they will be ok if they spend 8 hours apart sleeping.

Perhaps when women lose a twin they drop off the boards or twin facebook pages, so most do not hear the stories.... But I remember two Moms with that instant bond of pain.

And it terrifies me. 

Monday, September 22, 2014

Feeling Seperated and God Musings

Lately I have been struggling a lot with feeling separated from God. The odd thing about it is that I am probably putting more effort into my relationship than I have in times past when it felt very immediate. I try to pray more, at least two times with personal prayers and frequent smaller prayers from requests or thoughts of other people that pop up randomly throughout the day. I have tried breaking out the Bible and listening to Christian radio.

And I wonder why is it that when it feels like I need him, he seems quiet?

I wish I could say this is isolated, but it seems that a lot of parents that have lost a child go through this. I wonder sometimes if it is even for a purpose, maybe to say "this is what it would feel like if you didn't have me, so go out and share". I don't know. I have prayed for my heart to be changed, so that if it is me I could remove my road blocks. I have prayed for things to become clear.

But it is quiet here. No convictions or obvious push.

So if you are reading, I am asking for God to speak to me again. A nudge or a hand of comfort... just something.


And what happened to Lazarus?

I still have nights where I wrestle with my reality. Almost three years later it hits, as the air grows cooler and pumpkins reappear. Those are the nights of no sleep, and thankfully they are growing fewer and farther between... In the beginning it was every night.

Sometimes as a Christian there are simply no easy answers to tragedy. I struggled with the plan... it didn't feel right that a loving God could choose for this happen. And then I struggled with it simply being a result of random dumb luck in a fallen world. And after wrestling with God, I came to a conclusion. If I believe that there is a God that has grace and is bigger than me, I have to submit.

If you know me, submitting isn't really easy. This stubbornness has allowed me to succeed when I should not and survive when Perry died. Far from a complete fault, I believe there is a reason that I have it, but it is so hard to let go of the reins.

By submitting, I don't mean putting on the face that I do not hurt, I mean to say that I feel that I need to accept that either way that it was part of a larger intricate plan or a piece of what God has allowed by free will. I need to stop wrestling with the why because I may never know here. And either God is who we believe him to be or I am right (Perry should be here regardless) and his will is ultimately wrong

Job didn't know why he lost his children, only as a reader are you allowed to glimpse. He questioned God, and while he didn't receive an answer he received the answer- who God was, and that was enough. I don't know how this all works... and in reality I think part of the lesson of Job is that we don't know. Jobs friends quoted scriptures and yet they were wrong. Perhaps even as others try to give us a reason, perhaps we are equally wrong to waste our energy battering the walls of our mind for an answer that we are not given to know.

I have been struck a lot that as a Christian we aren't really taught how to deal with tragedy beyond the superficial anymore, we are taught that admitting hurt is wrong because we aren't serving as some sort of beacon to the world. But honestly, many churches focus on health and wealth now and take a single scripture to create entire religions. (And hence God answers all prayers the way we want and either you aren't faithful enough or are weak. You know the ask and you will receive scripture that is constantly quoted in every tough circumstances and then placed quietly away when the tears come anyway.). And when Job's friends used a single scripture in all contexts it was not correct then.

I have been struck more and more lately by the old hymns. They talked about suffering and you weren't faithless because of it, but talked about heaven and submission. There are many examples of faithful Christians that suffered even though we tend to focus on the Lazarus's. And you know what? The suffering and submission seem to sometimes go hand in hand, and it isn't really 'popular' today to talk about, no matter how necessary to learn.

I have done my multiple Lazarus prayers. I have driven by so many times thinking if I just have more faith this one time, the outcome will be different and there will be a little boy waiting for me by his grave. In my mind he ages, and should be a sweet faced three year old standing there or perhaps playing with the seashells as he waits for me.

I have asked why God seems silent, and I simply think that the answer is that in the midst of suffering sometimes we aren't ready to hear him. I believe we are not abandoned, but the quiet is difficult sometimes. I have asked many times why I did not receive my Lazarus miracle and why I do not today.

And in my search I have read the scriptures and one day past the Lazarus miracle I read on. I read on to where Jesus suffered... and even as the masses were drawn to him by Lazarus miracle, some were already plotting. And the plotting extended to Lazarus- to kill him and remove the evidence of who Jesus was. Sometimes then perhaps the real miracle would cause people to move against what they do not understand. We seem to accept our miracles today only as bordering on good medicine or on at least the explanation of science. If Perry were brought back, when there could be no denial that Perry was dead, would they even allow me to keep him, or tear us apart thinking that there were no way he could be my son? Would they seek to kill him and keep him in his grave? Or, worse yet, believe and simply remove him from me forever to meet whatever fate a human experiment would meet in the name of the betterment of mankind? Do miracles require some sort of ability to choose an alternate explanation and thereby grow people in exercising faith (in choosing that it is God's hands versus being undeniably told?). I don't know.

But as a Christian I can choose to believe that there is a God or as a skeptic that there is not. I choose to believe that Perry was more than random chance and that we are more than simply the universe becoming conscious of itself. And that calls for an acceptance of something greater than myself, a putting away of childish things (everything my way), and a submission.

I know that I will battle that guilt and that questioning of my faith- that desire to continue to pray and fighting the urge to drive by once again. I recognize that my continuing desire to have my son is both a strength of will and a sign of weakness all at once. But it is who I am, and perhaps with time I can keep the desire from anger at what my life is, stop striving, and simply submit. Set that burden down and finish my race.

Saturday, July 19, 2014

Why Some Loss Moms and Dads Hate Formal Family Photos

I am just going to throw this one out there.

There are a lot of things I am getting 'better' at, when viewed from outside. But some things that I am not. Or if I am quite honest with you, not necessarily still 'bad' at, but changed. Perhaps permanently.

And the one thing that I hate is really staged family photos, particularly those that line up kids from the extended family. I am just not into it.

The primary reason is that with spontaneous photos it is a glimpse of that moment. Not everyone is always there, and it is ok. Perhaps you get one with just a couple of your kids in a rare very sweet moment that reassures you that somehow they love each other even after fighting over Thomas the Train, Your lap, A Sippy Cup, The Tablet, Dolls, Trucks, Sandbox, Book, Dog, or basically any other noun in this plain of existence. Sometimes you rarely get most individuals (someone still takes the picture usually). In this world of incompletes, the child that is not physically present can coexist peacefully. They still have photos that exist that capture them as part of your family.

In the staged formal photo, everyone who belongs is there, otherwise there isn't much of a point to it. The problem is that either you have to accept that your child is somehow the odd one out, or that someone accepts this as complete. And while extended family may accept this, or see a very different view of the reality, as a loss parent I personally can't (maybe some can, but a lot do not). Everyone else sees who is there, but as a parent I can only see who is not there. It feels wrong. To me there is no point to it, it makes no sense. The concept brings at best alienation as the fake frozen smiles appear, and just pure pain for the most part. My family to me can no longer be a single family photo. It is a collage.

As kids the cousins would all get together and take pictures lined up. It was cute, all the gapped toothy smiles and teenage awkwardness blended together to remind all the parents of not only what had been for each of these kids, but what would follow in the natural order. Like a pair of jeans, I would inherit that teenage awkwardness as one cousin was growing out of it. Future family reunions stretching ahead spanned before us...And then the unthinkable happened. The line of our little group of girl cousins who would hold hands and play red rover under my Grandma's apple tree was broken. Somehow in the confusion of young adulthood one was taken away, and it made no emotional sense. Doesn't really to this day. We haven't taken photos in a line since. Perhaps most of it is simply due to distance, but it felt like the magic of it all left with her.

So be kind, be gentle. Don't fight it or sneak pictures if it hurts someone. You don't have to understand it.

I have to believe that someday photos won't be necessary to remember. And in that moment, we will cry happy tears because it will all be made right. The future will be restored.

But until that time, we will miss you. Both of you. Becca. Perry.

*Just for the record, I actually love this photo. It captured a moment in time and everyone is actually in it. What I hate is photos that set out to capture deliberate sets of people when one person is missing. If it is clear as mud, I am totally ok with it. I still love you if you can not follow that logic.

Friday, July 18, 2014

Nearly three years

Wow, I am still here. I mean I am not surprised because I had no intention of leaving, but at times it just did not seem possible. The load was/ is incredibly heavy.

But here I am, and sometimes it seems like things are changing. I do not know if healing is the right word, but I guess a new normal is coming. Sometimes I thought I would never reach it, other times I didn't want to (because letting go of that ugly raw pain is hard, because it is sometimes what you have left of your child in the present).  And yet it is coming.

Sometimes I do not cry every day... in the beginning I couldn't cry anymore because my body had no more moisture to spare. I am starting to look at chores again beyond the bare bone basics.... in the beginning getting out of bed to shower was a victory and a clean house was not on the radar. I buy clothing in advance again... in the beginning every unworn outfit stung (I saw them all as sad shadows of the ghost of a future that was never to be).

How did I get here? I guess I learned to cut myself a little slack. I learned to keep Perry with me in a way that felt real to me. I learned to set boundaries.

The angry is going away for longer periods. Bubble people no longer send me into fits of fury. I can largely sympathize with the minor setbacks in life again, or hurts that pale against death . I see most people as complicated lovely messes again.

I am changed. I still carry the aftershocks of Perry's death with me, still cry in the car or during hymns at church.

But I am surviving.

Friday, June 13, 2014

Blown Away Again

Sometimes you feel like you are adjusting to this backpack you wear and then it hits you again. I found myself last week with a day to myself, around Perry's birthday. I had already sent the sleep sacks to hospitals in preparation for some sort of vacation.

Unfortunately plans do not always work out for various reasons, and of course Emily and Paiden chose this time to become ill.... so the vacation turned into a staycation with short jaunts.

For the first time in over a year or two I lay in bed and couldn't convince myself to get out. I drug Emily's Thomas the train set into our bedroom and let Emily have a tablet next to me. Breakfast was cereal in Paiden's monkey trap cup and a pop tart for Emily.

For a long time I just watched Paiden playing with the toys and cried. I kept reviewing Perry's birth and inevitably his death and I could find no peace in it. I know at some points I got up, fed everyone, changed diapers, and did the bare functional things. But I don't really remember much about that day. I suspect the kids might have still been a bit down from the illness, they both slept a lot anyway.

Monday, May 26, 2014

Dear Loss Families- Pain and Love

Dear Loss Families,

Your pain does not equal your love. My love for my son is greater than the pain.

Somewhere along the way we have come to believe this, but it is not true. You can let go of the pain, even if it feels terrifying and like losing your child. You will never forget, you will never be who you were, you may not get rid of that heavy emotional backpack you are carrying here as you walk the earth, but it is ok to dig out of the black pain pit.

I have come to the conclusion that somewhere along the way we came to believe this fallacy, and that that all pain is equal became PC because we somehow validated our loses by pain level.... Well all pain isn't. And I won't lie and say that one loss hurts more or less, or even equal (whether the same exact loss or a different type, or your child was a different age), because I have not walked in your skin. Please do not do the same to me. I thought my miscarriages were the worst, but then I lost my son. I have heard other loss Moms say that the miscarriages hurt them as badly after experiencing both. Or maybe you aren't offering as much support to the Mom who lost her child seven years ago, because you assume she hurts less than the new Mom, but she is crying out that it hurts as badly to face his 8th birthday alone. You know what? None of us are lying. Old loss or new, baby or grown adult with children.

But I am going to tell you that regardless of your present pain level, your feelings are valid. You are not doing this wrong. You do not love your child less or more because of pain level. You deserve support. So don't argue about who hurts more or say all is equal, or deny that each loss has different aspects you may not understand. We do nobody, including ourselves, any favors.

Just support each other.

Once you can finally internalize this, perhaps you can allow yourself to heal a little without guilt.

The pain olympics or PC "all is equal" are both traps. Because you can't let go of the pain without guilt. Because then, what does it mean if you allow yourself not to hurt as badly or equal to what it did in the past? And unfortunately grief has a way of returning you to the beginning a lot, so in the moments you can breath again without deliberately focusing, let yourself.

You may be in intense pain today. And I am sorry we have to be here at all. Don't feel invalidated because you believe the woman who lost her entire family in a plane crash hurts more than you. Even if she does, it does not take away your loss or the love for your child. Don't feel that you have to say you hurt just as bad... because it doesn't matter. How you feel is how you feel. It is ok to believe you hurt less than her or you hurt less today than when your child first died, or whatever you feel. And a big part of seeing beyond your pain is to realize that others have been given a horrible blow in life too.

And then offer support.