What to Say to a Grieving Parent

I am rarely on Facebook but today I did log in and I saw this article trending. 

I found it to be pretty spot on. I share because I feel like it is a good reference for those who have friends that have lost a child and just don't know what to say to them. 

http://stillstandingmag.com/2014/01/6-things-never-say-bereaved-parent/ 

Reflecting

I have been on a bit of a sabbatical from blogging as of late.

Thank you to those of you who continue to check in, I am grateful for your support.

When the time is right, I will share where I am in my life.

In the meantime, I once again am reflecting on were I was a year ago today.
It was a year ago that we met with the fetal health team at Children's Mercy. 
 It was one of the most difficult days of my pregnancy. 

You can read my reflection after the appointment by clicking here. 

One Year Ago

There are very specific dates over the course of my pregnancy that I think will always be engrained into my memory. One of those days was the day that I went for the MRI...December 27, 2012. The sounds, the inability to move, the sweat running down my back, and a pure nervousness for what could possible be revealed...I remember it like it was yesterday.

You can reread my thoughts following the MRI by clicking here.

I vividly remember the conversation that I had with the perinatologist that day. I was about to walk out of work when he called. I remember what I was wearing, where I sat, and who was in the office with me.  I remember trying to write as fast as I could on a series of post-it notes. I could tell in his voice that Addy's prognosis was not good. I could hear his genuine and heartfelt concern. After explaining all the anomalies, he explained how he called every hospital in the nation that offer experimental in utero surgeries for babies with right sided diaphragmatic hernias.  None of the hospitals would accept our case but I was touched by his efforts. 

That conversation changed me.

I refused to give up hope but my momma instinct was not good.

Christmas 2013

I have always loved Christmas.

The lights, the carols, the decorations, the family time, and the birth of the savior.

But this year I didn't decorate my house. I just wasn't feeling the joy of the season.

But, I didn't want my Addy to think that she was not being remembered during the holiday season. So, I bought a couple of ornaments and made a few more and the only decor in my home this season is Addy's Tree.

And, I carried on a family tradition from my childhood.

Every year until I was well into my college years, we went to Crown Center at Christmas to see Santa. It was one of those traditions that I didn't appreciate as a child but long to carry on with my family.

I rehearsed what I was going to say over and over in my head, grabbed a picture of my Addalyn, and went to see Santa at Crown Center. I handed the picture to the man dressed in the red suit and asked him if he would take a photo with my daughter on what should have been her first Christmas. He smiled at me as I tried not to cry and told me, "Christmas is about what is in the heart and you my dear will be blessed." A few tears rolled down my cheeks.  I took my picture of Addalyn back and went to pay for her photo with Santa. The nice man at the checkout said that Santa paid for the photo and wished me a Merry Christmas. And the tears started rolling. As I was walking out Santa got out of his chair, came up to me, gave me a hug, and a kiss on the cheek. "You are going to be okay my dear," he said and then he asked if he could print one of the photos for himself so that he too could remember my Addalyn this Christmas season.  My heart was over joyed. He didn't look at me strange when I asked him to take a photo with my picture of Addalyn, paid for the printing of her photo, offered me encouragement, and then asked if he too could reflect upon my Addalyn's memory this holiday season. 

My heart overflows. 

To the moon and back my beloved Addalyn.

October 15th...

Today is Pregnancy and Infant Loss Remembrance Day and it would have also been Addalyn's 30th week of life. My heart was weary and overcome with pain as I drove to work today. The song "Worn" by Tenth Avenue North came on the radio and the words brought me to tears...

Let me see redemption win 

Let me know the struggle ends

That you can mend a heart

That’s frail and torn

I wanna know a song can rise

From the ashes of a broken life

And all that’s dead inside can be reborn

Cause I’m worn

 

I have struggled with my faith over the years but I know that I alone can't overcome all the hurt. 

And I know that you can give me rest

So I cry out with all that I have left

..........

There are a lot of amazing mommas that I have met over the course of the year who have lost part of what made them whole. Whether their loss was a result of miscarriage, stillbirth, or infant death, their loss is real and their grief is felt.  Thinking of them all today and everyday.

Butterflies

On a recent shopping trip, my 3 year old niece was in her own little world in the cart. 
She was making up songs about how much she "loves her mommy" and all about "riding in the cart."  As we continued to shop, I overheard her singing, "Baby Addy is flying in the sky with God and Jesus."

Proudly she continued, "I know how to swim but Baby Addy can fly!" 
And since she can fly, for Halloween, "Baby Addy is going to be a butterfly." 
Not just any butterfly, "Baby Addy is going to be the most beautiful butterfly with pink, purple, and sparkly wings."

"All little girls love sparkles," she declared!

I stood in awe.

From the mouth of a three year old, my beloved daughter is remembered. 

Portland

A much needed getaway to visit one of my dearest friends 
and her husband was long overdue.

We ate, shopped, pampered ourselves, ate, cultured ourselves at the art gallery, ate, saw a movie, went sight seeing, and ate some more.

I slept, caught up on some very educational TV shows, and relaxed. 

But mostly, I got to spend lots of quality time with one of my very best friends. 

 There was lots of laughter, conversations, tears, hugs, reminiscing, and motivational speeches.

Thank you for providing me with a much needed oasis. 

10.3.2012

I remember where and what I ate before going in.

I remember what I was wearing...the shirt, the skirt, the shoes, and the earrings.

I remember being so elated at the thought of hearing the heartbeat for the first time. 

Everything was so normal that morning but so quickly it all changed.

I was 12 weeks pregnant and I went in for a routine appointment. 

I had my phone out ready to record the heartbeat when my OB struggled to find it.

Knowing I was anxious that she was unable to hear the heart tones, we walked across the hall to the ultrasound room. Tears began to roll down my cheek as I quickly heard the lub-dub. The ultrasound tech continued to click and zoom on the monitor and then said she wanted to grab our OB. I tried not to panic but the look on her face caught me off guard. When I close my eyes, I can see them both standing before the ultrasound monitor and nodding. Something looked "concerning" but they would not elaborate. They moved us to a different room while they made several calls. 

I bawled.

We drove around the corner to the perinatologist office and checked in. 

I was so frustrated that they were asking routine admission questions...what is your primary language, highest level of education, emergency contact...grr! I just wanted to know what was wrong not answer a million and one questions about myself.

Finally, we were taken to the ultrasound room. I crawled on the table and exposed my belly. There was a large wall mounted TV across from us and I watched as the ultrasound tech did the scan. The baby was so small that it was difficult to tell what she was looking at.  She didn't say anything. 

Fairly quickly, the perinatologist came in the room and without hesitating she said the baby had a cystic hygroma. 

I had no idea what that was or what that meant. I think I stopped listening because I was so overwhelmed. We were moved to a conference room where we met with a genetics counselor. She talked about our family history, chromosome abnormalities, genetic syndromes, percentages, probability, termination, and on and on and on. I don't operate well under possibilities, I needed clear answers so I opted for an immediate CVS. After the procedure was complete, we walked out of the hospital with the wind out of our sails. 

I called my mom as we drove away and through my sobbing I told her "something is wrong with the baby." She kept asking "what" but I could not answer because I had no idea. 

We went in for a regular appointment expecting to hear the heartbeat for the first time but left four hours later depleted and terrified of the unknown. 

It was as if I had been mixed up with someone else. 

It was surreal.


-------------

  

Also, 

I am not in a good place in my life. 

I am not ready to elaborate but the same verse keeps coming to me....

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”   - Jeremiah 29:11

 I am not good at asking for help

 but, if you would, would you keep me in your prayers. 

 

 

Part of me was not sure I was ready, but a bigger part of me longed to go.

To see the people who helped to guide my pregnancy.

To say thank you to those who supported and encouraged me during the ups and downs.

To be in the presence of those who helped to bring Addalyn into this world.

To see those who tenderly cared for me during my moments of greatest need. 

To go back to the only physical place where my daughter ever was.

I needed this.

To celebrate what would have been Addy's first half birthday, I went back to again say thank you to the physicians, nurses, counselors, coordinators, and technicians who took my heartbreaking situation and helped me make it through.  

I will be forever grateful.

A 6 Month Reflection on Me...

I have been told three different times this week by three different people that carrying out my pregnancy was heroic, admirable, and commendable.

I am none of these things.
I am a momma who's life took a journey in a direction that I could have never anticipated. A direction that I could have never prepared for or believed that I would have made it through. 

I am not a hero, I simply refused to give up hope on what I longed so desperately for.

I have been changed and have found that I am stronger than I ever believed.
And, reflecting back on my journey, I am truly proud of myself.
Does it sound conceded to say that I am proud of myself?
I hope not. 

I don't mean to be conceded but life handed me the unimaginable in the past year and I am truly proud of me.

There was a large needled stuck into my abdomen while I was awake to obtain a segment of my placenta.

My arms, legs, and head were strapped to a table and slid into a closed MRI for close to an hour so a better image could be obtained of her kidneys.

I watched an ultrasound screen close to 15 times trying to make sense of changes from week to week riding the ups and downs as things got better then bad and then worse.

I sat around a conference table and listened as her anomalies were presented and potential interventions/surgeries/transplants were explained believing in my heart that quality of life should outweigh quantity of life even if my heart was not ready.

After indepth conversations to discuss the pros and cons, we made a decision to not wear the heart rate monitor during my labor knowing that there was a potential my daughter would not be born alive.

I carried my child within me for 35 weeks and 5 days despite the fact that being visibly pregnant resulted in very difficult and emotional conversations with people who had no idea of my story.

I had painful conversations about comfort care, death, funeral homes, and cremation/burial.

I endured labor knowing that my joy in the end would be robbed.
 
 I swaddled my daughter one last time, ensured her hat was perfectly situated on her head, gave her one final kiss, and placed her body into basket and sobbed as she was carried away knowing that I would never see her again in this life.

I packed my bag and walked out of the hospital empty handed leaving behind the only place my daughter ever was.
 
I bound myself with ice packs for close to two weeks when my milk came in to help reduce the pain.

In a fog, I finalized plans for my daughter's memorial service and I sat at the front of a church to celebrate the life of a child I would never know beyond her first and only day of life. 

8 weeks after her passing, I returned to work and walk the halls of the hospital where I pass the cardiologist that did the ECHO and the doctors from the fetal health appointment. My heart stings a little with each siting.

In working to get myself healthy, I continue to see a counselor, find solace in my support group, have managed to drop the baby weight, and am finding ways to ensure that my daughter's life has purpose.

I am a better person today because of her. 

I did what was best for Addy regardless of my what it would mean for my body, regardless of how sad it made me, and regardless that it was not easy. I believe so much that I am forever changed that if I could roll back time, I would endure it all again. I would because I saw Addy open her eyes, I had the opportunity to kiss her precious lips, I felt her warmth against my chest, and because I am at peace with our journey.

I have never uttered the words, "I wish we would have" or "if I could do it all over again, I would change." I prayed for time with my daughter and that she would not struggle. I didn't want her to gasp for air, to struggle to breathe, or to be in pain.  To be honest, I am not certain when Addy passed away. The time of her birth and the time of her death are listed as 41 minutes apart but there was not a clear moment of her passing. She did not live long but she never hurt, she never struggled, and she never gasped.  She passed peacefully and prayers were answered.

I am proud that I am still standing after the journey my life has taken.
And more so, I am proud to be Addalyn's momma.  


To the moon and back.