I Matter Too

The 2-year anniversary of Mira’s initial diagnosis, where we first got a clue something was wrong, is coming up this week (July 19^th). With all the emotions that come with anniversary dates, I have realized over the past few weeks that I have forgotten something rather important over these past 2 years.  I have spent so much time and all my energy trying to make sure everyone remembered that my daughter mattered, that I forgot that I mattered too. 

I think every new Mom goes through this to some extent.  The new baby is the most important thing in the world, and Mom gets shoved to the side a bit (or a lot depending on your circumstances).  New moms can easily lose themselves in this new role and forget that the other pieces of them have value too, not just their motherhood.  It is similar for loss Moms in some ways, but so incredibly different in other ways.   We are mothers too, so we need to learn to find our way in this new role, but there is no baby to show off and no traditional things to do to care for that baby.  We also must find our “new normal” amongst all this, whether we want to or not.  Through this process, we also have the challenge of the world around us telling us (often by accident) that our baby does not matter.  What is a loss Mom to do?  The same thing any mother would do if she was told her child did not matter, fight for her child’s value to be recognized.  This takes an emotional toll, so it is easy to forget about yourself in midst of it all.

Over the past two years, as I have lovingly found ways to mother my daughter despite her being in Heaven and I on Earth, I forgot that I matter.  Her short life matters and impacted many, and I will never, ever, stop finding ways to share that.  I will never stop making sure she matters and mothering her the only way I know how. But through all that, I can matter too. 

Eighteen Months

Two years ago, I was blissfully pregnant.  I was nauseous, exhausted, and having trouble walking due to a pinched nerve, but still joyful and so, so happy to be expecting a baby come winter.  At 9 weeks along, we had gotten passed the misdiagnosis of a blighted ovum scare that happened from 6-8 weeks.  Everything was perfect.  I had a great job, a wonderful husband, great extended family, owned a home, and I was pregnant.  Everything was just perfect.  I was moving at just the pace I wanted.  Then 3 weeks later I received Mira’s initial diagnosis, and it was like I got hit by a train and my whole life derailed over the next 6 months. 

Over the next six weeks while we underwent tests and saw specialists and the news got worse and worse with each test, my life was in triage mode, just pushing through the chaos.  I kept working and pushing through everything. I couldn’t take time off; I needed the money and insurance.  I needed PTO saved for a maternity leave.  This is how things work in our country, no time for a break during a crisis, because the benefits don’t allow this.  I did everything I used to, while also fighting for this little life inside me. 

After finding out no treatment was available for Mira and moving to a palliative care team, life moved at a strange pace. I wanted time to just stop, but it moved forward just like it did before. I filled every moment I could with special time with Mira.  I talked to her in the car as I drove between sessions at work. I sang to her.  I read to her every night between dinner and my early pregnancy bedtime.  Joe and I took her to so many places and described them to her.  We took pictures and prepared for her birth so we could squeeze everything into the time we would get.   The world spun on around us, but for Joe and I, that time was lived in a bubble of nothing but Mira.  When you only get a few months with your child, you need every second to be about them.  We invited lots of people into our bubble and they got to know her too and share many special moments with her.  We invited some people in who walked away instead, but we just stayed in our bubble of love.  Time moved on while we existed in this bubble, and I was aware of every second going by.  Then she was born and died and our bubble continued in the hospital, but burst with an indescribable amount of pain as she was wheeled out of our room by a nurse, never to be seen by us again. 

May We All Heal: Part Eight

May 29th: Day By Day

Everyone says you have to take it day by day right after the loss, just think of one day at a time.  But that is a lie.  You have to literally take it a moment at a time in the very beginning.  Then slowly you get up to an hour and then eventually day at a time.  I still take it a day at a time mostly.  Asking me to plan far ahead is terrifying.  I had plans, wonderful, beautiful plans.  They fell apart.  When Mira died, so did all the plans I had for life with her.  All the plans I had for my life.  It makes it hard to go about planning anything significant again.  I have certainly made progress in this area!  I have started an adjunct teaching position, and will be teaching my first class this summer.  That took a lot of planning and commitment!  I can plan ahead just fine at work and for anything professional.  It is personal planning that is still a major struggle.  Planning a trip, planning an event, planning a future.  It is still scary.  But I work through it day by day.

May 30th: Power

We have so little power or control over our own lives.  I did not fully understand this before losing Mira.  I knew and completely believed the God had all the power and was in full control, but I did not fully comprehend how little power I had.  I followed all the books' advice and doctors' recommendations for pregnancy from the time Joe and I started trying to have a baby, long before I was even pregnant, just to be safe.  I took the vitamins and ate the right food.  I avoided what I should and added in the right things.  In the end, it didn't matter. I lost my baby anyway.  When Mira was diagnosed, I researched like crazy and tried everything to save her.  I found I had no control over her health at all. I begged God, the one with the power, to save her.  And he did not.  It seems, I did not have any power at all to control my life or save my daughter's.  That was a hard, hard, lesson to learn.  And there is no sugar coating it.  My daughter died.  God did not save her.  I could not protect her. And I had no choice, and no power, in the matter.  In realizing this, all I can do is continue to submit to the One with all the power.  I have to trust that God has the power because He knows so much better than I what must happen.  I will never know while I am still alive, why He did not use His power to save my Mira, but I do have complete faith that He has a plan bigger than I do. 

May 31st: From Now On...

From now on....

I will keep loving you, Mira.

I will keep trying to live my life in a way that is honoring to you, your daddy, and Jesus.

I will not give up, even on the hardest days.

May We All Heal: Part Seven

May 23rd: Nurturing Myself

Nurturing myself has looked like learning to say no to some things, mostly events.  Somethings are just too hard to attend now.  I nurture myself and respect myself by not going.  I am still working on this though.  There have been a quite a few events I have attended even though I knew it wasn't overly important that I be there and even though I knew that it was going to be very overwhelming for me and cause some setbacks.  Typically I went only because I did not want to deal with the anger and lack of understand of other people, but that is no reason to do something.  So I am working on it.  But I have learned to say no sometimes.   I have learned how to help others when I can and how to gently step back when I can barely help myself and have nothing to give.  I am also learning to give myself grace in some areas and not beat myself up for everything I can't do perfectly.  I have a long way to go in nurturing myself, but I am starting to try.  

May 24th: Creative Healing

The creative things I have done as I heal have been the most meaningful to me.  I have created a memorial area for Mira in my home, with several of the items made by me.  I paint canvases with lyrics and imagines of my grief. I made a scrapbook and memorial video.  Writing in this blog of course is such a great help for me as well.  The creative things keep my hands busy when I would rather them be caring for a child.  They keep my mind busy when it wants to give up.

May 25th: Sound

The sound of Mira's heartbeat will forever be the best sound <3 

May 26th: What Now?

Oh, this is a question I ask myself all the time lately.  Not very many family or friends read this blog anymore, so "what now?"  Should I stop writing and sharing?  No, it helps me whether anyone reads it or not.  I may wish my friends and family would still read so I would feel more understood and be able to share my feelings with them in a way that is less intimidating to me than having to bring up the my grief with them myself.  But really, the writing does help me get things out whether it is read or not, and I do hear from some other loss Moms who come across my post and find them helpful.  And if it helps one person, than it is worth it. So what now?  Just write when I want to, don't when I don't want to. 

I have so many beautiful items for Mira, I have many things I have lovingly made, I have bought, or others have gifted us. I have foxes and memorial items in each room, just as I wanted, so "what now?"  Do I stop making and purchasing these small things that show my love?  No one else has to stop making/buying things for their children, so I think no, I won't stop doing these small things.  And I still recieve gifts, or cards, or mementos from others every once in a while and it lights me up!  So what now?  I think just keep doing what feels healing in the moment.  

These two "what now"s really get to me somedays as I feel like I am doing something wrong, but for now I will just ignore them, as it is working for me and not hurting anyone.  

May 27th: Spirit

Mira, 

The spirit of unconditional, never ending, never changing, fierce, motherly love you awoke in me will be with me always and forever.  Thank you for showing me this wonderful love.  

Love,

Mommy

May We All Heal: Part Six

May 18th: Luminous

To be honest, I am not really sure what to write for this one.  Luminous makes me think of hope shining through the darkness. It's just that hope is so complicated right now.  There is huge beautiful hope in that I will see my Mira again in Heaven, but honestly, that hope doesn't help me live here today, that hope makes me want to be in Heaven now.  There is a small shining hope that one day I will be a mother to a child I will get to raise here on Earth.  The small shining light is scary though, because having another child opens the possibility of losing another child.  What you need to understand is, when your first, and only, child has a fatal condition and dies, all you know of pregnancy and birth is death.  In my personal experience, pregnancy leads to pain (physical and emotional) and then death and grief.  So that hope of having a living child is present, but it struggles to shine through the darkness.  I do hope that one day it is luminous.  Though I have a feeling it won't happen unless/until I have a living, healthy child in my arms.

May 19th: Changes 

After infant loss everything changes.  Everything.  All your relationships change. Your perspective on work, children, illness, life, meaning, values, on just about everything changes.  Finances change.  Parts of your home change.  How you spend your time changes.  Your life changes. You change.  You learn that nothing is really a constant and everything will change. And that is scary, I once thought I had certain things in my life I could count on to be true no matter what.  I have learned the only thing that never changes is God.  Even in that though, my relationship and ways to relate with Him have changed.  So nothing is left untouched.  This is a big lesson I think we all learn slowly in life, but with a trauma like infant loss, you have to face it overnight.  

May 20th: Emerging 

Emerging back into life after loss is scary.  There is so much that can go wrong.  And the further back into life you venture, the easier it is to get hurt and the harder you can fall.  I had a great Saturday and Sunday with my husband and I was honestly feeling better than I had in probably two years.  I felt myself "coming alive" more and emerging further into the world again this weekend.  Then Monday I had a hard, hard grief day.  It was like a wave hit me for no reason completely unexpectedly.  I hurt so much more because I had been doing okay the last two days, maybe even doing well.  I had emerged further out of my safe space and then the waves pushed me all the way back, and it felt like it hurt more just because I had further to fall.
But I did have two really good days. And those days were triggered by God speaking to me through a beautiful painting of Jesus holding a lamb in a storm.  So I will keep coming back to that moment of truth and I am not letting that feeling of having emerged go, I know God is still holding me.  He didn't take the storm away, but holds me through it, even though I had to retreat a bit, he is there to continue to hold me when I try again tomorrow, and the next day, and the next.

May 21st: Wonder
I wonder all the time.
I wonder what would you look like now.
I wonder what would your first word would be.
I wonder if I would be a good Mom.
I wonder if you would laugh and giggle all the time.
I wonder if you would be stubborn and give me a challenge.
I wonder why you are gone.
I wonder why any baby has to die.
I wonder why others can't understand.
I wonder when I can hold you again.

May 22nd: Separate and Together
Mira and I are obviously separate, as she lives in glorious Heaven, and I live here on Earth where beauty can be found, but so can so much pain and evil.  But we are together still, as she lives on in me.  I make sure of it.  I do things in her honor to help others.  I speak of her as often as I can.  I love her fiercely.  Since I grew her in my womb, I carry her some of her cells and DNA in my body still. And I feel her here. Joe and I have both been blessed to smell her on occasion, so strong and so out of nowhere that we know it is her scent.  I will never forget her beautiful scent of the gentle flower soap we used to bathe her combined with her newborn baby smell.  It sometimes surrounds and overpowers me, usually when I need comfort the most, and always when I am not expecting it.  I know my daughter lives in Heaven, I don't believe she travels her to Earth to be with me.  I do however, strongly believe, no, strongly KNOW, that God sends us these signs to comfort us and remind us Mira is waiting for us.  She is with us in that way.