On Our Hearts


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I’ve debated whether or not to put this out there… these things we are learning about ourselves and others and grief, and how to navigate the delicate and intricate waters where they all come together after a loss. But on this January 19th, one month after we lost our Anysia, I have felt like getting out some thoughts that have been stirring our hearts and souls lately. Even if the words won’t be seen by any or all of those we would hope could know our hearts, I still put it out there as a marker we lay down to remember where we are at right now and the places we have come from.

They won’t be organized or ordered {rather just the stirred-up order in which they came to mind as I typed}, but after losing Anysia… in these days that have followed and are yet ahead… these are the things we wish we could say to everyone we know… what is on our hearts.

We are not afraid to talk about her, so we hope you are not either.

We don’t feel awkwardness talking about her, so we hope you won’t either.

We want to talk about her.

We need to talk about her.

We don’t always need to talk about her.

We aren’t opposed to letting ourselves feel normal for five minutes or an hour… or a day, even. But life for us isn’t normal yet, either. Whatever normal means.

We aren’t strong.

We have crumbled under this… many moments. On many days. And we are bound to again for a while yet.

When we seem strong, it’s either because we are “faking it until we make it” or because God has given us some sort of supernatural strength to endure… even rejoice.

Every bit as much as we need to grieve losing her, we need to celebrate having her.

When we find and express joy {in regards to her or just with life in general}, it doesn’t mean there is no more pain.

When we are in pain and it is obvious to others, it does not mean we are unable to carry on. It just means we are grieving. And we have to feel pain. Again, we are okay with that and hope you are too.

Even though we only knew her for six hours in ways most know their infants for months, we still loved her. We still love her. We formed a great attachment to her. If we did not want and love her, we would not have carried her.

Even though we only spent a short amount of time with her, we miss her so deeply.

Even though she had Trisomy 18 and was gravely ill, we still wanted her.

We hoped we could have her with us, healthy or sick.

Though we had six months to grieve losing her before she was even born, it does not mean we grieve less now that she has been. In fact, even we thought that might be the case at first… we thought we’d done the bulk of dealing with her loss before losing her, because we had so much time to prepare. But we’ve found it’s not that way. Actually, it’s more like starting all over again.

We had to make the most difficult decisions in regards to her that we’ve ever had to make.

We each, Dad and Mom {and Big Brother}, grieve differently from each other. So we all need different things.

We don’t want anyone to be silent if it is for any of the following reasons… this is too painful for you to witness, it is too awkward for you to say anything, there is too much there to process and it is overwhelming.

We aren’t offended if you don’t know what to say. In fact, we find it a compassionate response if you tell us so, because we know that, even without the words you lack, you still realize the depth of our loss.

We are not easily offended when it comes to thoughts or responses {or what may be considered the proper thing to say} about our loss, nor have we been by any of the words that have been offered to us so far. We’ve never heard a single word uttered to us that we thought distasteful, hurtful or offensive, and we have a lot of faith in people saying something helpful, healing or comforting based on the many words of condolence we have heard up until now.

We would almost rather hear “the wrong” words than none at all.

If we don’t hear from you in this time, we struggle to understand why, and we want you to know that if it is for our benefit and you have worry with reaching out, please don’t remain reluctant. We want you to. We reached out to you, because we want to be connected. Desperately. It might not be every minute of every day that we want to or can. But at the heart of our loss and grief, that is what we genuinely want. Please know that, and don’t be silent on our account.

If our loss is far too difficult for you to face or enter into, we understand. Even then, we would still love to know that is the case. We would readily give you that space just as your silence would seem to ask for it.

We never want you to feel uncomfortable being near or a part of our loss and sadness. We are not sad 100% of the time. We want everyone to feel like they can be with us now just the same as they were before we went through this. Anysia has not changed who we are with you or how we feel about you. So we hope she has not changed how you feel about or around us.

Talking about her is therapeutic for us. It helps us to do the most important thing we can think of… to remember her… something so very difficult to do when we had so little time with her.

We find tears to be healing. Ours. Yours. One. A thousand. We don’t avoid them at all.

We have both {Mom and Dad speaking} experienced loss of a loved one before. This loss is so much different from those losses. It’s not more significant. It’s just so much more difficult, and we find them incomparable. We hope that sheds light on why we are still devastated and far from feeling healing… why we will forever grieve.

We never want to cover our grief. Our heart is never to make our grief less or more than it is at that moment. We’ll have bad days and good days. There is never a day that we want to feel as though losing her has isolated us from you.

We know you might not hold the same beliefs that we do, so you might see our loss and reaction to her life and death differently than we do. We are okay with that. If we weren’t okay with differences like that, it’s likely you would not be in our lives to begin with. It is not what you believe or don’t believe that makes us love you. We know the reverse is true, too. So if our beliefs are not a barrier, we hope Anysia’s life and how we got through her life and death will not be either.

We are dealing with and grieving loss that reaches beyond the loss of Anysia… smaller, less obvious losses that are all encompassed by our greater loss of her.

Even though we grieve, we smile and even laugh sometimes, too. Our loss is not separation from the blessings and gifts we already had, and it does not blind our eyes to the blessings and gifts that came of her life. We laugh to remember what it’s like, because we have lived seven months of tears… even screams. We laugh because it saves us sometimes. We want more than anything to be able to keep laughing with you.

If you can’t laugh with us, we’ll take crying too. If you can’t cry with us, we’ll take the laughter… or whatever it was we used to do before she came into our lives.

If you can’t laugh or cry with us, we are fine with talking “like normal”, but will find it hard if you do so without any sort of acknowledgement that she was part of our lives. We just don’t want the you missing from that equation… from the dynamic we once knew.

We will be sad whether we talk about her or not. That being the case, we would rather it is not the latter.

We know that just as everyone grieves differently, so does everyone react differently to watching someone grieve. We are okay if you watch and grieve with us differently than the next person. But the key is that you are with us, just the same way you were before.

We are still learning… unfortunately in the most difficult way we possibly could… all that is involved in losing and grieving for an infant.

We realize we are never completely alone, but losing our daughter can still feel very isolating. Feeling sometimes isolated as a result of this experience, all the more we need connection… wanting it as well.

We don’t want to sit stagnant in a pool of grief, but rather we hope to flow with and through an ever-changing river of grief. Though we know we have some control over the way we see our loss, we can’t control how it makes us feel. And we can’t rush any one part of what we are going through. Some will think our grief lasts too long. Some will think not enough. We don’t know how long it will last. We don’t know how intensely this will affect us. We are still finding that out. We will have enough expectations that we’ll likely put on our own selves, so we hope you will not have expectations too. If you do, we may not be adequate or able to meet them. And it won’t be because we have no desire to. It will be because we simply can not.

We know some people grieve more privately than the level we are comfortable with. We are not afraid of or opposed to sharing her life and how she’s affecting ours.

We chose not to have an organized, planned one-time funeral or memorial service. We hope that did not make anyone feel left out. We wanted to memorialize her and celebrate her in other ways… by reaching out and sharing her life, and even her death… and through words and images, how she has changed our lives. We may not be in a room where all are gathered to grieve and pay respects, but our hope is that this could still take place… just not in one specific room or on one specific day, but in any room, on any day. One-on-one, in those rooms and moments that we would be talking to you anyway… before Anysia was brought to us.

We have no desire to give any impression that is along the lines of “Look at us and how strong we are. We can get through this.”…because, frankly, there are days when we wonder if we can. It’s easy to be transparent when we are strong, but more difficult to let the falling-apart days be seen. It doesn’t mean they don’t exist.

We don’t want a single soul to feel sorry for us. We have learned through our journey just how many other families have gone through what we have gone {and are still going} through. We have been shown many comforts, given many gifts and taught many good things. We were shown goodness and peace, given the gift of time with her, and taught countless things about ourselves and God. We have not walked away from this forever devastated or bitter over losing her. We’ve been sheltered under the wing of the Almighty. And we don’t want anyone to be devastated for us either.

We don’t want her to be forgotten. Many babies are. Many children are. We don’t think she is any more special than any other child, including our own still with us. We don’t think she is any more deserving of being remembered. But we still don’t want her to be forgotten… and we especially don’t want to forget her.

We need to keep talking to people… even about her. Even not about her. Even more than ever.

We hope you are never afraid to say her name.

We realize that, though you may have walked closely with us or even carried us through this ordeal at times, your life is moving on at a different pace than ours… so much so, that it may even feel to us like it never paused. We will try our very best to remember and accept that. We hope that you will too, even when our pace seems too slow or sometimes even paused again.

With already broken hearts, everything else we observe can seem heartbreaking, too… even things that would not normally seem so.

Though she was with us a very short time, she is such a major part of our lives, and always will be. She is every bit as much our child as Isaac is.

It is difficult to reach out and ask for what we need. Not because of who we are individually, but because this is human nature. We fear being a burden. But we are told often when we have need that we are to be the ones to reach out and ask for what we need. Please know this is not always easy. It isn’t even easy when not grieving, but it is especially not easy in the midst of loss and sadness.

We hope for grace in return for any times we may not handle things well. We realize we won’t be perfect in our sadness and struggle. We may say the wrong thing or neglect to say something we should. We may be too sensitive or come across unreceptive. We may lose our composure or retreat to a more private place. But we ask for grace in light of our loss, just as the three of us have had to give it to each other over and over again.

If we don’t hear from you, it is terribly difficult to see this as space being given out of a perception that it is needed. Instead it feels like whatever our minds come up with to fill in the blanks at that particular moment… depending on how difficult a time we are having at the moment. It might feel like abandonment or shock or indifference or dissatisfaction… not space. So we plead with you to never think it better to give us space if space means utter silence and can only take that form.

We have no expectations of you. We are learning we shouldn’t, just as no one should have them of us through this. We only have wishes and hopes, or sometimes requests… and we’re still figuring those out, too… but no expectations.

If you feel you don’t know any or all three of us well enough to approach our grief or loss… as if you don’t have the right or you are less welcome than others… please know that is not true. We have poured our hearts out even to people we have only just met, some of whom we will never meet again. It brings just as much healing to do so with those as it does with our own spouse or the closest of friends and family. It does not matter to whom… we love to share about our sweet baby girl.

Grief isn’t solely worked out in our hearts and minds. In manifests in physical ways, too. Many of its ramifications are physical. That is where support comes in welcomed.

There is no preference of support. A card in the mail or a text {if you don’t feel comfortable speaking face-to-face} can mean every bit as much as going on a walk or sitting over coffee to talk. If words don’t come easily, but a meal or a day of babysitting Isaac does, it means just as much as words of comfort.

We need support. It need not be in any one form or from any one person. We can use it in any form and from any person. We only know we feel wobbly without it.

If we have reached out to you, it is because we love and care about you and trust that we can.

We are most deeply grateful for any way you could possibly hold us up through this time, no matter how big or small.