Compartmentalization

 It’s been a while. Lately though I’ve had a lot of little triggers that have brought back some of the hard memories.

I realize that to survive my brain has shut doors- and if I’m honest, not just to the bad things but to the good things because sometimes my brain takes me bad places.

And although I’ve gotten a bit better at not going to that dark place I still do. But it has been a while- and I know a bit better how to climb out.

But as much as I struggle with the bad it is nice to remember some of the sweet little things like his hands in my hair. Some of those doors have slid open too. And I’ve watched a video I haven’t been able to in many years.

I also realize that now that my brain has used it with Perry, it is a coping mechanism it also uses for anything. So I now have blanks sometimes where pieces of my life should be. 

It leaves me feeling a little fractured at times.

I remind myself I am more than my loss. Perry was more than his death. And I live on.

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I tried to comfort another parent this week. To tell them that after 4 or 5 years life doesn’t hurt so bad. Her answer was “I will always miss him”. And yes you do, but scar tissue generally forms and living doesn’t hurt so dang bad anymore.

I don’t think she wants to ever feel better. I think she’s in that trap of feeling like if the pain is any less you are somehow not loving them as much anymore. And I think it is a pretty common place to be stuck some of the time. Maybe she tells herself it is because my loss was somehow less than, I’m not really sure. But every time I see her she has aged a little more. 

Every loss parent usually ages. Our hair goes grey and wrinkles appear rapidly. There are moments you look in the mirror and are startled at the changes.

My body hurts too much for my age.

I really hope she is able to see light between the trees and doesn’t stay there- and sometimes I think that’s an alternative ending that I could have easily gone to myself. It takes a lot of tiny steps and clawing to keep from sliding there. 

For those of you still reading- your love does not have to always equal your pain. You may feel like letting go of pain is losing your child, but in time your brain may lock away even the good memories of your child if you stay there too long. Your child is not just memories of a coffin. It is hands in hair or for older children maybe the first time you sat beside them and they drove with their learner’s permit. It is their smile, the sounds they made, the things they loved.

Your brain is an incredible thing and it will often kick in to slide hurt behind a wall. Sometimes it doesn’t and I think you can consume yourself in the pain. It can slowly burn your body up.

There’s no set timeline. But I really wish for every parent out there- that we won’t lose our child or ourselves to our pain. You aren’t a failure if you are stuck- if you need to please ask for help. It may take a lot of effort to find a support group, or the right counselor, but the right one can make you feel seen. You didn’t choose to be here, but it is going to take a lot of work to keep from being engulfed.

I had another parent tell me that we choose our outcome. That we choose who we are. That parents either grow in compassion or can’t see outside themselves in their pain. And if we are honest- maybe we can all be a mix of those at times. My hope is that I become Perry’s legacy and not collateral damage of his death, and that is a choice I try to consciously make.

Sunrise

This is October. It is my bittersweet time of remembering. The following is a project that is part of Pregnancy and Infant Loss Awareness Month. I have decided to do some of the projects, even if it takes me a bit longer or I do not exactly follow directions.







The first day is listed as Sunrise and I thought it oddly fitting that the first photo that popped up today on my feed is this:




This is what I think of as Perry's sunrise, full of promise.

If you know me, I want you to look at the face on the far right. This is me, the before. It was maybe 6 years ago but I feel I have easily aged 20 years since then. The beauty of this photo is that it was the first taken of me with the knowledge of Perry. I had found about him the previous week after arriving at the Academy. Somehow that first week I just knew.

These guys and women were some of the first I told, and after battling through four years of classes and epic papers we had developed both professional and personal friendships. They were also some of the first to reach out in that agonizing week after, when so many did not know what to do. The fire service, this bunch included, is comprised of some of the finest human beings I know; To be able to see what they have seen and still have compassion is a rare trait in society.

I wonder if I could somehow talk to this girl what I would say.

The Baby in the Picture

I try not to hide Perry from his younger brothers, maybe with the hope that they will also see him as a part of our family. I believe that far from making them feel afraid, that acknowledging him will make them feel more secure. I want them to know that I will always love them- each of them. Nothing, not even death, changes that.

We leave Perry's picture up on the wall. We have changed the frame because quite frankly I do not want something that matched his casket, I want something that matches the furniture in the home, but other than that it has pretty much stayed in the hallway on Emily's level to keep her from climbing up on furniture to touch or kiss it. I don't say anything to her- but I can tell from the smudges on the glass that she still reaches out to him through it.

There are many milestones that have occurred in our house, and our reality is that one of them is the first time a baby notices his picture as we walk past and reaches out, smiling at it. They seem befuddled why this baby doesn't feel like they do. I usually say something about it being their brother Perry. It seems to happen (the reaching) around 3 months.

Paiden has grown up thinking that our life is normal. That part of daily life is to light a candle by Perry's hideout. He considers it a great honor to hold the candle on the way there and sometimes gets upset if he is left with one of the adults instead of getting to come out. He sorts the shells and little rocks from vacations on the base of Perry's stone and sometimes examines the little stone turtle (Emily calls our family the hurry turtles so I wanted it when I noticed it at a store on one of our travels to New Mexico or Mexico).

One day he found the photo scrapbook that a family friend made me of Perry. He looked at all of the pictures and keep saying "Cute baby". I showed him pictures of himself as a baby and of Emily. The wheels seemed to be turning.

The next day I was carrying him down the hallway and he reached out for Perry's picture, so I stopped. "Where is the baby in the picture? Where is Perry?"

My heart dropped. "Perry died".

"Perry in his hideout?"

Hideout is Emily speak for grave. She was not much older than Paiden when we lost Perry and this is how she verbalized it. We didn't look at it as confusing her, because anyone who saw her reaction to Perry's casket at the funeral service realizes that even at a young age Emily understood what had happened, realized his body was in there, and that she was heart broken when she saw it for the first time. Looking back maybe we should have let her go in with us earlier, but I think we were so horrified at the thought of what she had already been through on the day he died that we just wanted to somehow transport her as far away from that day as possible. You make horrible decisions as a grieving parent that you never should have to- this sort of thing is not covered in parenting books.

And just as Emily had that moment of realization, Paiden was there too. We think subsequent children will not, but they really do.

"His body is. It broke."

Paiden started to cry. "Perry is dead." He touched the picture, slithered onto the ground from my arms, and curled into a ball on Emily's floor crying.

How does a child his age understand what death is? I do not remember having a conversation with him. Did he remember losing Schroeder? Or maybe a chicken?

Survival Skills

I think some of the worst parts of learning to navigate the new reality of life without a child you love happens during the holidays. I would like to share with you some of the lessons my husband and I discovered early on with the caveat that every grieving parent is different.

1) If it doesn't harm you or others, isn't illegal, and it helps you navigate life, do it. What I mean by this is if it helps you to hang a stocking, buy the perfect gift, buy a Christmas ornament, decorate an empty chair at the table in honor of your child it is ok to do. Brush off well meaning people that think you are dwelling on your loss, most of the time they are simply uncomfortable or have no yardstick to understand what you are going through.

2) Be cautious with large gatherings, whether public or family. The expectation is to pretend happy. If you feel up to going, go. If you do not, I give you permission to stay home. If you have a spouse or significant other or even an older child, set up a secret signal to indicate that you need a time out or need to leave. Gatherings are easier when you know there is an out if you need it- if possible the other person comes up with a reason to leave (the one who is not triggered and more capable of talking coherently).

3) Come up with a placeholder for your child. Family gatherings can be very hard on a parent who has lost a child. Weddings and holidays are minefields because everything about them is hard- 1)knowing that if your child were here, this is exactly where they'd be 2) in milestone celebrations the reality that you child will not graduate, have a sweet sixteen or quinceanera, or get to marry and 3) the formal family picture where all the grandkids except yours is lined up.

4) It is inevitable that your children will be asked to sit in a family formal portrait, plan for it. Make a placeholder if you prefer (a toy or picture that stands in for your child) and if you can't stomach it, say no. I think the first formal portrait is best left to your immediate family in a way that feels safe and best to you. If your extended family brushes off your needs it is absolutely ok to say no. Don't feel bad.

5) Value your own emotions. Before you worry how your request or absence will affect others, take into account your own emotions. If it causes only mild discomfort or you think it might, it may be worth it to attend or go along with their desires (always keeping in mind a secret signal or allowing yourself to change your mind). If it causes extreme setbacks, as in after the event you might be back in bed trying to talk yourself into just getting dressed again, it is not worth it.

6) Realize that relationships change or past relationships that were healthy for you may no longer be. It is ok. You are not a bad person, they are not a bad person necessarily. They can be wonderful people in all other aspects but manage to crush what is left of you into dust with thoughtless words or deeds. The reverse can happen as well... relatives you were not close to may be the only ones who remember certain dates or who still remember your child in special ways. It is hard to know what to do and not everyone is capable of it. Just roll with it.

7) Recognize that the only person who had your special relationship with your child is you. You may think close relatives should understand your triggers or not push you to get over it, but they don't have the same ties. They may have their own triggers or honestly just not be as close to your child as you are. The biggest hurt comes from those we expect to give us the most support and do not.

8) Try to maintain what relationships you can in the ways that you can. Maybe you can' shop for a child because they should be the same age as your child, but perhaps you can give a gift certificate or allow your spouse to take over. Perhaps baby showers will hurt for a while, but you can still send a card with money or a gift.

9) Give yourself grace. You will mess up, perhaps make an ass out of yourself in the eyes of another person, it is ok. You might be angry for no reason. Accept that this is a crazy emotional experience and do not expect to grieve like the parents featured in the service at church last week. If you mess up, genuinely mess up (not just refusing to live up to expectations), say you are sorry when you are capable of it.

10) Learn how to deal with angry in a nondestructive way. We are often uncomfortable with our own anger. After losing a child you will go through angry spirals. And guess what- that is also ok if you learn to handle it without destroying your family. Can you jump on packing bubbles, buy plates from goodwill and throw them on the ground, kick a soccer ball, go into you car and scream with the windows up?

11) Be prepared for kickback from extended family or friends when you no longer behave as you used to. Ask yourself what role you have played in the past (were you the peace maker or expected to keep quiet when hurt/ not make waves? Were you the supporter in the relationship?). How have your survival needs changed this or may make it necessary to change? This is one area where you can grow in a positive way. Learning to stand up for yourself or learning not to stay in bad relationships is a good thing. You are not a bad person for making your needs known. It is uncomfortable at first and others will try to put you back into your old role.

12) Learn to ask for help from safe people. A safe person may not necessarily be close family or friends, it may be a counselor, psychologist, or another grieving person who has been there and done that (be aware that child loss can make people more compassionate or have the opposite effect). Choose someone who you can trust.

13) You may or may not need medications to help cope. Neither one is wrong if it is the right answer for you and the decision is made with consulting a mental health professional that is familiar with child loss. In other words, don't let someone minimize your grief by implying that you are doing it wrong and should obviously be on meds to meet their expectations, or let them tell you that you should toughen up and help yourself when you believe that they are helpful. You will get a negative opinion no matter what you do, the best option is the best one for you.

14) Practice self care. Eat high quality food, drink plenty of water, get enough sleep, get counseling or seek out group support if you need it, exercise, and guard yourself emotionally in areas you need to. Be aware of the brain fog and set reminders for routine Dr and Dentist visits. If you feel something is wrong physically, have it checked out- grieving is a huge stress on your body.

15) Watch out for signs of PTSD- there are treatments available to help.

16) Plan for the brain fog. Learn to set reminders on your phone or to use calculators to verify numbers at work. If you work with medications, make sure that you follow procedure and verify what you are giving, the patient, the route, and the dose with a coworker (it is advisable even without brain fog). Make lists and add to them as thoughts occur. Simple activities can be become difficult. Allow for extra time to complete tasks- in other words, your days of being able to procrastinate are probably over.

17) Pick up a hobby. Puzzles or a mindless repetitive task can help take your mind of things when you just need a short mental break. Other hobbies that require concentration, like archery, can serve the same function, just make sure that there is an extra factor of safety (rock climbing may not be the best option).

18) Beware of trying to self medicate. You are very susceptible to addiction using alcohol or drugs. Eventually we all face the grieving process even if we delay it a little. Be cautious about the friend who want to help take the edge off.

To me parents that have lost a child are emotional burn victims. At first nothing hurts (shock) and everything hurts. Give yourself grace and take care of yourself. With time joy will creep slowly back into your life as you emotionally get used to carrying the weight, but do not beat yourself up over unrealistic expectations. Sometimes it simply 'is what it is' and you need to survive before you can get to the point that you begin to regain your footing.

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. 

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.


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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.