I read this article a week or so ago when a friend shared it
and have not stopped thinking about it since.
Then this week, it showed up in my email as well from NILMDTS’ mailing
list and I read it again. And the words
still rang true, so I just had to write about it myself. I encourage you to take the time to really
read the linked article as the writer share things so eloquently.
The reason I haven’t been able to get this list out of my
mind, is every single item listed is a fear of mine as well. Usually when you come across list articles,
some apply, and some do not. This
article hit so close to home, it was like the author read my mind and put words
to fears I hadn’t known how to express.
I would like to list them here and talk about how they affect
personally. I know getting the words out
will help me, and I hope they will help those in my life understand me a little
too.
1. We fear you will think another
baby or child, biological or adopted, will replace the one(s) we lost.
No child will ever replace Mira. If
Joe and I add to our family, we will love Mira’s younger sibling just as much
as we love her, but the sibling will not replace her. The hole she left in our family will not be
filled, there will ALWAYS be someone missing. The harsh reality is that the
hole is there forever, until we meet her again in Heaven. Having another child brings on a new level
grief, and joy, to life after the loss of a child. I know there have been people in my life that
have said to my family/friends, “Oh I wish they would just have another child
so they could feel better/move on/let go.”
One child can never replace another.
I would never treat another child as if there were a replacement (how
hurtful to that child and my Mira!).
2. We fear you will see our
progress as proof we have “moved on” with our lives.
As I continue heal in different ways all the time, this is such a big
fear! I have struggled with this a lot
lately and not known how to put this feeling into words. I am not fine, I am not “better,” (and never
will be), but I am making progress. A
lot of progress. It goes back and forth
of course. But I have made
progress. I can breathe easier. I have made big positive steps in my life
(like changing jobs!) that I could not imagine handling a year ago. But I have not moved on. I will NEVER move on. I move forward though life with my daughter
and my grief by my side. It is
terrifying to think of others perceiving you as moving on. Support is still needed as often as possible
and Mira (along with the rest of my loved ones) is still the most important
part of my life. I will (and do!) still
have very bad, very hard moments and days.
This fear causes worry that no one will understand or be there when that
happens.
Right I after I wrote this paragraph, I came across a video by Nora McInery (an author and speaker) and she addressed this so perfectly that I had to come back and add a quote from her. She says, “I haven’t moved on. I hate that phrase so much and I understand why other people do, because what it says is that Aaron’s life and death and love are just moments that I can leave behind me and probably should.” I completely agree with this statement and that is why I haven’t and will not move on. Because “moving on” says Mira’s life and death and love are just moments I can and should leave behind, and that couldn’t be further from the truth.
3. We fear you will not include
our heaven babies with our living children.
This is such a fear when it comes to things like family photos and
holidays. Will anyone ask for my
daughter to be represented if big family photos are taken at some point? When pictures are taken all the kids and their
gifts, will my daughter get to be represented? Will anyone beside me even think
of it, or will I have to put myself out there and ask? What looks and responses will I get if I do? Do you remember my daughter in the family
counts? Do you call her your niece? Your
cousin? Your granddaughter? Your great-granddaughter? One of the babies born in the period of time
at work or church? I know many that do,
and I am so thankful! But the fear is
always there, because there are some that do not. That same fear will be present if I become
pregnant. How many times will I have to
remind people that it isn’t my first pregnancy?
That it is not my first/only child?
It all comes back to, do you recognize my child and my motherhood?
4. We fear you will think we are
seeking attention.
I worry about this a lot. It was a
big conversation Joe and I had when we first decided whether or not I would
write about Mira in this blog, I was worried people would think I was writing
to seek pity and attention. And that it
not what I wanted at all. At the time it
was really just to provide updates to friends and family in order to save us
from so many texts and phone calls after each appointment. Then this blog quickly became a place for me
to process my thoughts and emotions and seek support. Then, it became a way to help others
understand our grief journey and take my small role in ending the silence
around infant loss and grief. I still
write, and I still post on Facebook very often about my daughter, for all those
same reasons. I am not looking for
attention. I am looking for
understanding and support, as well as to raise awareness and help other loss
parents feel less alone. I know I should
not care if some people think I share posts about loss and pain, pictures of my
daughter, and write in this blog for attention, but I do care. Not a lot, I’ve grown passed that worry being
such a focus, but it is still there. I
hope people care see the true reason for all of this, that is important to me.
5. We fear you will think we are
being petty or selfish.
Sometimes, often even, I can’t do the parties and events that I used to go
to. I have never liked big gatherings,
they aren’t my thing, I get anxious with bigger groups of people and over
stimulated by all the noise, but I often went anyway. Now, with grief in the mix and the additional
anxiety and PTSD triggers after loss, I often don’t go at all and when I do, I
struggle, a lot. I fear others will not understand that I simply can’t
do it. And it had nothing to do with
pettiness or selfishness, its just too much.
The same applies to seeing the groups of children at church or in the
family that I know Mira would have spent time with. I know I do not always hide it well when I
see these kids together and watching them hurts my heart. The pain in my eyes has nothing to do with
bitterness, jealousy, or anger. I don’t
want what you have. I want Mira. And I see that hole in the group that others
don’t even notice. I feel alone, because
I see that hole and others don’t. I feel
deep pain knowing she should be there.
6. We fear you have a timeline for
our grief.
It felt like the second the funeral was over the clock started ticking on
my grief for many people in my life. At
almost two years since my daughter’s death, I get the message from some people
that the time for having empathy with my grief is over. And this makes the fear that those that are
still supportive will at some point grow tired of me very real. It is a fear that screams in my mind when I
am really struggling and wonder if my pain is annoying those that I reach out
to. So often I just don’t reach
out. Instead I post something on my
Facebook or in this blog where I feel a little safer from rejection. I would like to get better at ignoring this
fear, but it is hard when some have turned away. When even the most well-intentioned people
have sometimes said something so hurtful like, “it is time to move on.” Time does not heal this though. There is no timeline.
7. We fear you’ll judge our faith.
This one goes both ways. There is fear
that some will judge that I still have faith after the loss of my daughter. Some have wondered how I could still love and
believe in a God who did not answer my desperate prayers to spare my girl’s
life. A few have seen Mira’s death as
proof that I should not believe in and worship God. I worry that if I share the deep spiritual moments
I have had since losing Mira, others will judge these moments as not real, just
the desperate fantasy of a grieving Mom.
There is also the fear of being judged for not having enough faith. Maybe if I had more faith Mira would have
been saved. Others believe I should just
have faith I can have another, healthy baby and not worry about all the very
real possibilities of losing another child.
Others may judge and think if I had more faith and trusted God more, I
would not be grieving still. This fear
is fed by the graphics and memes shared by others saying if you just trust God
everything will be fine. By the sermons
at church services tell us just to have faith and all will be well. Oh, how I wish that were true! I fear, if those people sharing these things
truly believe that, well, what does that say about my life? That I didn’t trust enough? That I didn’t do the right thing enough? That I didn’t love enough? People sharing these things or saying similar
things to Joe and I make this fear so real.
8. We fear you will compare our
baby loss experience with someone else’s baby loss experience.
Why is it that people feel the need to compare? To try and relate when they cannot? I cannot tell you how many times I have
shared something about Mira to be immediately told the story of another loss
mom the person I am speaking with knows.
My story is shoved to the side and I am told that this person, they
understand, because their sister, friend, coworker, third cousin twice removed,
loss a child in some way. Sorry, that
doesn’t mean you understand. And all you
have done is pushed my story, my child to the side to talk about something to
make you feel more comfortable. I have also
been compared to others in the way of, “Well, they lost a child more recently
and are doing better than you.” Or, “At
least it wasn’t like so and so who lost a baby to SIDS/cancer/after being in
the NICU.” The other comparison that
happens is being told how this person or that reacted to their loss (donated
breast milk, raised money, became a better Christian, took in foster children, adopted
from Russia, etc.) and being told (or it just implied) you should be doing the
same. No comparisons are ever needed in
child loss. And I don’t need to know
what amazing things that woman you saw on Facebook did, I am honoring my
daughter in my way and I believe she is proud.
There is enough guilt in infant loss, be careful to not add to it by
making these comparisons (accidently or on purpose).
9. We fear you will not understand
the ways we choose to honor our child’s memory.
I honor Mira by sharing about her with others, the same way any mother
would. I don’t treat her life like a secret
to only be shared when I know someone well.
I have filled every room in my home with her pictures and memorial items. I have rather large dedicated space in our
main living area that honors her. I share
her picture and posts from loss pages online.
I make crafts/art in her honor. I
attend loss events. I write about
grief. I make my Mira’s Banners of Love. There is a lot of focus on Mira in my
life. And I love honoring her in this
way. I do often get self-conscious about
this though. I ask Joe, “Do we have too
much stuff for Mira around the house? Do
you think people think it is crazy?” I share
a loss post or a picture of Mira for the 100th time and then a few
hours later almost take it down, because I wonder, “Am I annoying people? Are they thinking, ‘Oh, God, there is another
one’ rolling their eyes as they scroll past?”
As a loss Mom you want to talk about your child all the time. I mean constantly. So I find myself literally counting how often
I have mentioned her to make sure I don’t say too much. I say something and then struggle with
anxiety for the next hour wondering if I should have just kept my mouth
shut. This fear can be overwhelming. It has been big for me since starting a new
job. I worried about how and when to share
my daughter with new people. I worry about
if I can share a story when the other parents are talking. I share a story and
then torment myself with fear about whether they understood my intention in
sharing. I worry, “Did I sound so casual
that they will think I am fine with the death of my daughter and it does not
hurt anymore?” I worry, “Did I sound too
hurt and people will think I cannot handle my job because I am too broken?” These fears might sound ridiculous to some,
but they come from a real place as I have faced these harsh reactions in the
past, leading to the fears being here now.
10. We fear you will forget them.
I think this one is probably the biggest, deepest fear of most (if not all)
loss parents. We fear we will be the
only ones who remember them. We want,
and need, more people than just our spouse and/or our parents to remember our
child. We need their whole family to talk
of them and share in honoring them. We need our friends to comment and “love”
those pictures and posts we share. We
need to know our babies matter to you.
We need to know that our love, and our pain, matter to you. We need to know they will be remembered for
as long as your living child is.
The perfect words never crossed my mind
'Cause there was nothing in there but you
I felt every ounce of me
Screaming out
But the sound was trapped
Deep in me
All I've wanted just sped right past me
But I was rooted fast to the earth
I could be stuck here for a thousand years
Without your arms to drag me out
There you are, standing right in front of me
There you are, standing right in front of me
All this fear falls away to leave me naked
Hold me close
'Cause I need you to guide me to safety
(Snow Patrol)
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