TEAR study

I know I have mentioned this before, so I thought I would pass along the link for those who are interested in participating. Here is the information from the email I received:

T.E.A.R. Study Launch Phase II!

Call for open participants

Bereaved parents, grandparents, aunts, uncles, siblings, and friends who have experience the death of a child family member!

Please follow the link below to participate in the T.E.A.R. Study!

Or go directly to the main website here!


PLEASE SHARE THIS EMAIL WITH AS MANY OTHERS AS YOU CAN!

Invite your family members and friends to participate too!

Thank you so much!

Drs. Joanne Cacciatore, Cynthia Lietz, Jeffrey Lacasse, Melanie Fox-Kean, John DeFrain,
& PhD Candidate Jane McPherson
for the T.E.A.R. Study Team

Remembering Our Babies

Today is National Pregnancy and Infant Loss Remembrance Day. A day for remembering all the precious little ones who are gone too soon.

Ethan McKinley April 28, 2009

Remembering you today sweet boy! Can't wait to see you in Heaven one day!!

Day of Hope

Today is a day to remember and acknowledge. 

We are grateful for the time we did have together, and look forward to the day when we meet again.

Two Words

**This is something I have been thinking about for awhile, but wondered if I would share. It's a balance for me (sharing deeper stuff) that I don't always do well, but I want to be honest about what losing a child is like.**

There are two words that I hate to hear. Though medically accurate, they instantly dehumanize and in my opinion, attempt to devalue. It's a pair we hear a lot when we meet with doctors to discuss losing Ethan and the conditions that caused it.  Fetal Demise. The first time I heard it, what a gut check. One breath outside my body and the words would be different. His chances of survival would be decent, and the medical community would see him as a child. I think I could tolerate the fetal part if they would just say fetal death. Demise to me doesn't admit he was living in the first place, like he's just an object. Argue to me that he wasn't living because he wasn't born yet and you might bring out the mama bear in me. That's like saying I'm not a mom.
 
I get that their jobs can be hard, and they see a lot of loss, particularly high risk doctors. They have to be detached in some ways and I understand that to a point. I guess that's the difference in the way we view things. For me, it's a personal experience and for them it's a clinical experience.

Regardless, I will continue to pepper the conversation with his name and try to bring the humanity back into the conversation of statistics and medical terminology. Don't get me wrong, I don't want to avoid the clinical discussions, they are necessary! But Ethan will always be mean more than those two words. Much more.

Ethan's Birthday

Ethan's first birthday was bittersweet, but it was wonderful to remember. Brian and I discussed how we wanted to remember and decided to make it a day we spent together. My one request was that I get to make a card for his birthday (the one I posted on that day) and it was nice to have something to focus on.  On the 28th, we went and bought flowers for the cemetery and a little cross. My aunt made us a few arrangements we are going to switch out later on in the year so he will always have flowers.

 

The rest of the day was quiet. We watched his NILMDTS slide show for the first time. It was beautiful and  I'm glad we have it in addition to the pictures. I think Bri and I needed the day to just love on each other and remember, and I'm happy that we were able to spend the time together in Georgia.

Eleven Months: Can it really be?

I can't believe it's less than a month before Ethan's first heavenly birthday. To be honest, I'm not ready. I try not to dwell on what Ethan would be doing now, or what our life would look like. But, at occasions like this, it's hard not to know. When you pray for a child for so long, you have lots of time to dream of what's to come. Looking forward to simple things like late night bonding and learning how to parent, and bigger things like big dinners with family and how we would celebrate birthdays. It's hard to reconcile our first birthday dreams with reality.

Being pregnant along with many friends, I've had the joy of watching their little ones grow. I would be lying if I said that sometimes it wasn't hard, but for me, withdrawing from their lives would only make things worse. My gut instinct when I am uncomfortable or hurting is to protect myself, retreating from those I love. Since being a hermit isn't an option and I crave relationships, I'm trying to stay present. It's been a bit harder lately as others plan and celebrate first birthdays, so bear with me if I'm more focused on how we're coping.

I don't often ask, but will you pray for us as we approach Ethan's first birthday? Right now we're not sure what it will look like, but it is incredibly important to me to do something.  More than likely we will not be able to go to Georgia (where Ethan is buried and our families live) and that is hard on my heart. I've also been a lot more sensitive in my interactions with others, and putting high expectations on relationships, and I don't want to be that way. Please pray that we would find peace and comfort as Ethan's birthday approaches and that we can celebrate his life.

You are not alone

Tonight Bri and I decided to head to a Selah concert spur of the moment (we found out about it this weekend). As in, the concert was in a town about an hour away and we decided an hour and a half before it started. I had gotten their new CD for Christmas, and really wanted to see them in person. Bri obliged me, we made it there with 10 minutes to spare and snagged two folding chairs along the wall of a packed house. We were just enjoying the music, and then Todd Smith mentioned that his wife was going to speak. Can I tell you how excited I got that I would get to hear from Angie?

When Angie stepped onto the stage my emotions were already starting to churn. I knew she was going to share Audrey with us, and I always feel blessed when another mother gets to recognize her little one. Tears started pouring as she recounted their story and I got caught up in a tangle of emotions for their Audrey and our Ethan. She said something that struck me. That Audrey had weight, and she mattered (she put it more eloquently, but I think you understand). It was so nice to hear words iterated that I feel so deeply. She then asked all the mothers who has suffered a pregnancy or early child loss to stand up. Honestly, the number of women who stood up were staggering to me. She said what I so desperately needed to hear tonight: "You are not alone". I get frustrated sometimes, because this kind of loss is such an isolating thing and not something everyone understands. Seeing tangibly others who have lost was overwhelming and comforting at the same time. We are not alone.

That visual reminder will stick with me for a long time. I'm so glad we were able to go and experience the music and testimony!

Threads of Hope, Pieces of Joy Bible Study: Week 1

Walking With You is an outreach of Sufficient Grace Ministries, led by Kelly Gerken. We are a group of mothers who have lost a baby or child. We gather together from different places on our journey, each month to share our stories, to encourage, and pray for one another as we walk this path together. Our hope is that you will be comforted when you join us here...and maybe that we can offer some grace for the journey as we look to the Lord for comfort and strength.


This month for Walking With You, we are starting something new. We will be going through the Threads of Hope, Pieces of Joy Bible Study for the next nine weeks. Even if you have not joined us previously, I hope you will join us for this. All are welcome. My prayer is that it will bring hope and much-needed encouragement to hearts that are grieving. 


I'm truly looking forward to walking through this study with others who are on the same journey. There is comfort in knowing you are not alone and delving into scriptural promises. Since I have not shared Ethan's story completely before, I thought I would start out with a short summary. I'm hoping to write out his full birth story soon and record some of the memories we have leading up to his birth as well.


April 2009 was a big month for us. Brian received his Doctorate, we sold our house, sold one of our cars, I resigned from my job, and we packed to move up North. We had normal doctors appointments and had been given approval to travel with stops to stretch. We were stopping in Georgia for Ethan's showers and then making our way to New York. Moving was a whirlwind and we made it to Georgia safely. Saturday we had a shower in Ellijay and Sunday we had one in Dacula. Since we knew we were moving we had not made many purchases yet, so it was neat to pack up all the goodies we received and put them on the truck. Early Monday morning, the day Brian and my brother were going to start driving the truck (I was staying in Georgia to rest a few more days) I woke up and knew something was wrong. We rushed to the emergency room and they found out my blood pressure was dangerously high. Because of other symptoms, and ultrasound was performed and I could tell by the looks on their faces and the silence in the room that something was wrong. A doctor came in and told us I had preeclampsia which caused placental abruption and that Ethan had passed away. They admitted me, started the induction, and we were in shock. Twenty nine precious weeks with him, and he was gone. They confirmed I also had HELLP syndrome and that Ethan potentially had IUGR (different doctors have different opinions). I delivered Ethan on Tuesday and we got to share him with our families and have NILMDTS pictures taken. I was discharged from the hospital on Thursday and we had a graveside service on Friday morning. We celebrated his life and were loved on by our friends and family.

There are several questions and scriptures to read in the second chapter, but I am just going to focus on what meant the most to me. The book talks about the questions you ask in the beginning, primarily 'Why'. I do still wonder why sometimes, though it comes in shifts. I have mostly come to terms with the fact that I will probably never completely know why. Sure I know what physically went wrong, but I will probably never know why we didn't just have a preemie in the NICU or why having children comes so easily to others. I realize that it's just not something I'm going to know, but I'm glad that God does. The author points to Ecclesiasties 11:5 and Isaiah 55:8-9. I also believe that it will all work together for good (Rom. 8:28), and that is a big comfort.

One scripture that I had not studied in particular was from II Samuel 12:15-23 when it talks about how David reacted to the death of his son. He grieved while he was ill, but after he died he worshiped and spoke of being with him again in Heaven. I don't always have that attitude, but I do cling to the fact that we will be reunited one day. This passage was a good reminder of that promise.

T.E.A.R. study

Molly Piper posted about the TEAR study on her blog awhile ago, and I signed up (she gives a much better description here). I just got an update from them, and I was thinking that perhaps some of you have suffered from a tramatic loss and may not have heard of the study. It sounds like a unique opportunity to participate in grief research, so I wanted to pass it along.

TEAR Study information

In real life

I didn't blog much while I was in Georgia so I'm pretty far behind on the happenings. One of the neatest things that happened while I was 'home' was that I got to meet another babyloss mom in person. Tonya is such a sweetheart, and is a good friend of my Aunt Lori. She was tender enough to send me a very thoughtful email after we lost Ethan, and it was a big comfort to know someone else understood.

Tonya, Aunt Lori and I met at Tonya's house and it was just what I needed. One of the things that I've realized about how I've changed is that I have a very hard time showing my emotions in front of others. Not necessarily the best habit, and poor Bri ends up dealing with the aftermath. Talking with Tonya, the tears just flowed. She got it! With the stress of the holidays and being back where we lost him, it was a time that I very much needed.

After I calmed down =), we ate at a cute little place called Sugar and Spice (I think that's the name) and I had really yummy Chicken salad. We also looked around Real Deals, a cool place with all kinds of nic nacs and furniture. If we lived closer, I might have gone home with some goodies =).


Thanks for letting me just be me, Tonya. It was great meeting you and I hope to see you again!!

(ignore my cheesy grin and windblown look, I had to share the picture!)

Bare Honesty

I read a post by Kelly at Sufficient Grace this morning, and it really made me think. I don't think it was meant to be the main focus of the post, but she was talking about being a 're-player' and it really hit met because I have been doing that all day today. It's honestly a bad habit of mine, because when Brian and I get together with other people my insecurity comes to a head as soon as we get in the car. I'm usually giving a play-by-play of all the things I said or did that were goofy at best, and reading deeper into what others say. It drives him crazy, but he tolerates it pretty well, reminding me that I think about things way too much.

I know it is probably shocking to some, especially other baby loss moms, but most people in New York don't know about Ethan. It's not because we're ashamed (incredibly far from it), but it happened for a variety of reasons. At first, it was because it we lost him while we were moving, and we knew no one up here. We had to tell Brian's boss because he was going to be late to start his post doc, but it has never been discussed since we got here. I'm an incredibly private person (one of the many reasons that blogging came as a surprise), and losing Ethan is so very personal. It's not something you rattle off as a factoid when you meet someone new, and it changes the way people interact with you. If friends don't always know how to handle it (understandably so), how do I expect strangers to know how to react?

We have been trying to meet people at church, and started attending a small group of married couples. I've got to be honest, it was really hard. Things are different here and I have such a hard time with change. Though it was a new group, many of the couples have known each other for awhile, and most are younger than us. The past two weeks seem to have been easier (though I still replay things in the car) and have enjoyed getting to know a few people better.

I was honest about my desire to find a job, which is sticky thing to me because I know people wonder why I wasn't looking before we moved. This week, one of the ladies I have gotten to know emailed me to let me know about a position available in a Chiropractor's office. I was so touched, and yet uncomfortable at the same time. Ever since we lost Ethan, I have a really hard time with medical offices. Not really a good thing when you have to go back several times, and just thinking about that setting gives me chills.

So I took a leap. I really wanted her to know how much I appreciated that she thought of me and to also understand why I couldn't do it. So I told her. And now I'm wondering if that was the right thing to do...I hate all the double-guessing! Being so open makes me fell bare. I just don't know how else to truly let people in without exposing our hurt. And tonight we go back to small group and I'm so very nervous. Yuck!

Does that even make sense?  Do you struggle with insecurity? Are you a re-player? If you are, how do you tame it?

Our first Christmas without Ethan

Christmas time brought a lot of emotions to the surface that I thought had receded. I was blessed to be able to go back to my hometown and spend time with family for my birthday and stay until New Years. It was a truly wonderful time, and I would do it again in a heartbeat, but it brought back a lot of memories of losing Ethan and what we thought this year would look like. There were many positive times with others, but also some deep hurts. I doubt I will elaborate on the few negative things that happened, I'd rather focus on all the positive ways others helped us remember him.

 There isn't anything we can do to change the past, but we could remember him in our own little way. These are the ways we chose to remember him at Christmas.

We were able to adopt a little 6 month old boy off the tree at church. It probably sounds weird, but it was kind of fulfilling to be able to channel that desire to buy little things to get things for someone in need.

I was able to find Ethan's ornament on the memory tree at church as well. It's not the best picture, but you get the point. There was also a sign next to the tree with 2 Corinthians 1:3-4 on the bottom. Definitely added that verse to my scripture spreadsheet (I know, weird, but its a good way for me to reference and memorize) and it instantly brought to mind several who have been that comfort to me. So, thank you for all that you mean to me!

My hometown church also has poinsettias you can place in memory of someone, and Ethan had a few (from us and other family members). I was going to put a picture of the brochure, but I can't figure out how to blur the other names so I won't. Though not a big thing, it was one more tangible way to remember him.

Before Ethan's headstone was finished, Brian and I moved and we really wanted to visit our sweet boy. I bought flowers before Brian arrived and we went together to visit the cemetery. It was nice to finally see everything put together, and get to put out flowers. Brian's family had also sent flowers (right) and my Papa had left the white ones. It was nice to see that he had other decorations.

We didn't decorate in New York this year, but we did get a few things to decorate next year. Ethan has his own stocking now, and I'm excited to display it next year. He will always be our first born and a member of our family and it was comforting to be able to include him in our celebrations.

Remembering at Christmas

Walking With You was created by Kelly of Sufficient Grace Ministries to help support those who have lost a child. Together we share our stories, helpful information, scriptures, encouraging words, prayer requests, and more. To join in on Walking With You please visit Kelly's blog. 

If you are missing someone you love this Christmas, someone of ANY age who is spending Christmas with Jesus this year, I hope you will join us on this very special Walking With You. We are sharing our Christmas memories and the ways that we remember our loved ones who have gone home to heaven at Christmas time.

I have to admit this season has brought back emotions I haven't felt so strongly in awhile. I'll always miss Ethan, but thinking about the holidays and all the things I thought we would be doing together this year is hard. This is a picture from last year, when we were still basking in the joy of finally being pregnant. Baby Long, as we referred to Ethan in the beginning, had presents already and it was fun to display them under the tree and think about him using them.

This year looks different. It's a sobering fact to know he won't be here this Christmas or any others until we get to Heaven. Spending Christmas with the One the holiday is all about (Jesus) is better anyways. I keep trying to remind myself of that fact.

There are a few ways that we are going to remember Ethan this year. I have been on a mission to find the perfect Christmas ornament. I wanted to find one that celebrated his birth but didn't say '1st Christmas' and that acknowledged that he was a gift. I got a little carried away and ended up with three, but I think that's okay. You can probably tell by now that I like 'Snowbabies', and it was so fitting to me that they said what I wanted to say. One has Ethan's name on it, one says 'Gift from God' and another says 'From God 2009'.

 

My hometown church also has a memory tree with ornaments for loved ones who have passed away this year. I don't have a picture of that yet, but I hope to take one before the season is over. Ethan and my great uncle Larry also have ornaments on this tree.


We are also choosing a name off the Christmas Wish tree at church. We are hoping to love on another little boy in need this Christmas and hope to make 'adopting' a boy at Christmas a tradition. Ethan has everything he needs, but there are other little boys out there we can help.

Intentional Faith

Waking up the night of our last baby shower, and realizing something was wrong was not part of my plan. On our way to the hospital, I was pretty calm. In my head, I kept repeating scripture from Proverbs: "Trust in the LORD with all your heart And lean not on your own understanding;  In all your ways acknowledge Him,  And He shall direct your paths." And I believed. At the time, I didn't realize what the path would be. That His path would mean a painful journey to a new place without Ethan. Honestly, I am glad I didn't grasp how hard it would be. I believed we would be in Georgia a little longer, and that Ethan would still come home with us.

 But God didn't direct things the way I thought he would. His hands were present, and I felt that. But it was harder to have faith on a rockier path. I couldn't see what was up ahead and I was frustrated and angry that I wasn't on the path I had chosen. I struggled seeing other people on the path I wanted to be on. I felt left behind.

Losing Ethan made me realize how intentional faith is. To me, intentional implies a choice. It's not that things weren't a choice before, but they were easy and convenient. Before I believed. Honestly, it wasn't difficult. Life wasn't always perfect, but I never lacked the important things and faith was homey, comfortable. I was raised in a loving home and a community full of believers. I've had cherished family and friends close by to lean on during every season of my life.

 

This past year has been the most trying I have ever experienced. I know it doesn't come close to the trials of others, but I do have a taste of what intentional faith means. What it is like to choose it. And as He promised, His grace is sufficient.  I still have 'path envy' sometimes, and it's not easy to trust in the path God has put me on. I don't have it all together, and I definitely don't always make the right decisions. Though it doesn't always feel like it, this path has it's benefits. It's not quite so steep when I'm not fighting it's direction. It's like trusting the guide instead of trying to venture off on my own. I know God is much bigger than that, but the point is, He knows what's best. Having a more intentional faith didn't change what I believed, but realizing the choice did make it mean more. There's comfort in knowing that I don't have to know the way, I just have to choose faith in the One who does.

Half Birthday

Today is your six month birthday baby boy! I have to admit, this is a birthday that was harder than I anticipated. I think it's because this time of year is when it all began. Last year at this time, we were one day away from finding out you existed. At Thanksgiving, we told family and were so excited. We spent Christmas in Texas, but you got so many presents from family and we didn't even know yet if you were a boy or a girl!

It's gloomy outside today. Earlier it rained, and now it's cloud-heavy and gray. No sun in sight and the trees are almost bare. Kinda like Mommy's emotions today. My body recognizes the approaching date before my mind does. It a guttural ache that reminds me of all that is missing. The holidays that will happen in the next few months that you won't be with us to celebrate. Seeing all my friends celebrating with their kiddos, all the babies and pregnant women at church, and even the stupid mailers I still get from Target and Babies-r-us reaffirms that for me.

I got some books I ordered in the mail today. Kinda fitting since two of them have to do with you! I'll Hold you in Heaven and Mommy, Please Don't Cry: There Are No Tears in Heaven are all about you, sweet boy. There is comfort in knowing others are feeling the same way, and it helps to read blogs and books that remind me it's okay to miss you.

The fact is, all the wanting and wishing in the world won't bring you back to us in this life. Instead, I'm trying to focus on remembering you in the ways I can. Mommy is looking for the perfect ornament to put on the tree. I'm also trying to decide if we will do a box for Samaritan's Purse, for a little boy 2-4 years old, or if we will try to sponsor a child locally that would be your age. Whatever we decide, it is something I want to do every year to honor your memory. Focusing on others helps, or at least it has so far.

God has a plan, I know that and I cling to that truth even when I don't see or understand it. In so many ways you are blessed because you have missed out on all of the hurts of this world. We love you so much!!

Revelation 21:4 (New International Version)- He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away."

Remembering

Today is National Pregnancy and Infant Loss Remembrance day. It's a day to remember all the little ones who have passed away.

For all the families who didn't get to hear that sweet cry, nibble on little toes, and feel that sweet breath. You are not alone.

I will be lighting a candle tonight to remember Ethan and all the other little ones.

There are several resources out there for pregnancy and infant loss:

Sufficient Grace Ministries blog and website: Kelly was kind enough to send us a Memories of you book
To Write Their Names in the Sand: To see Ethan's name in the sand click here
Now I Lay Me Down to Sleep: Taking precious professional photographs, we will treasure our pictures of Ethan always
SHARE

We love you and miss you sweet boy!!

Ethan's name in the sand

There is a wonderful site organized by a family that writes the names of children who have passed away in the sand and photographs them (for free). This family has also experienced a loss of their own and do this as a way to honor their son Christian's memory.

Amie was kind enough to tell me about this site and I submitted Ethan's name. Ethan's picture is now up! Below is the link:

http://namesinthesand.blogspot.com/2009/10/ethan-mckinley.html

If you go look at the picture would you leave a comment and tell them thanks? I want them to know that what they do is very much appreciated!

Five Months

That's the monkey Pat, Tasha and Granny got you! Though you didn't get to see it, it reminds me a lot of you so it sits on my nightstand (Mommy was going to decorate your room with monkeys). When I miss you most, I can always hold your monkey and listen to the music I did when you were born. It's the one I always played for us when work got stressful and I hoped to play it for you when you were fussy because it's so soothing to me. As much as I love it, I bet it doesn't hold a candle to the music you get to listen to now.

Love you and miss you!!

Hebrews 11:1 "Now faith is being sure of what we hope for and certain of what we do not see."

Four Months

I can't believe it's been four months, Ethan. Honestly, I think it is still sinking in. This has been the month where my mind has forgotten you are gone for brief moments. Where my heart cringes when we rearrange the guest room because I wonder where your crib will go. Or I see some fabric and think "That will look great in Ethan's quilt". Seeing the little John Deere hat that Mimi and Pops got you that matches Daddy's hat. Reality rushes in quickly, I try not to focus on what could have been. Regardless of how things turned out, I wouldn't give up all the joy you did bring us when you were here. Oh how I miss you sweet boy!

Walking with you ~ The things people say

Walking with you was created by Kelly at Sufficient Grace Ministries as a way to support those of us who have lost a child. While I read these posts weekly, I have been observing rather than participating because many things are still too fresh for me. This week's topic was something I wanted to share in though as I think it's something that many people struggle with.

Here's the topic for this week:"... we are sharing some of the things that people said to us while we were in the throws of grief...for better or for worse. Losing a child changes a person, and along with that comes changes in our relationships with friends and relatives. In some ways, our new perspective reveals what's really important in life, and who really cares about us."

I should probably start with two disclaimers. 1) Everyone grieves differently, so what is hurtful to some may not be to others. 2) If you have said anything hurtful that I list below, don't let that discourage you from reaching out in the future. I would rather have something said to me in love that hurt than to be avoided all together.

I have been very blessed to have been supported by a wide range of people. Placed in their shoes (someone who hasn't lost a child), I can't honestly say I would be able to respond as well. I can give you a few clues into what can be offensive/hurtful:

- "You can always have other children": Whether this is true or not, the ability to have more children doesn't absolve the grief over losing our child. Children aren't interchangeable. Getting and staying pregnant isn't easy for everyone either.

- Asking "How are you?" as a social statement rather than wanting to know the answer. Grief makes people uncomfortable, but if you don't want to know the answer, don't ask the question. Know that if you do ask, you could get a reaction of tears or smiles depending on the moment. Sometimes just knowing others are truly interested is the best kind of support.


If you're like me, you don't necessarily know what to say. I can tell you a few things are are helpful to me:

- Do know it's okay to admit you don't know what to say. Even saying 'I love you', 'I'm thinking of you', or 'I'm praying for you' means a lot. Even silence is okay, knowing your intention is what is important =).

- If you want to talk about Ethan, that's okay. I think one of the things most who have lost a child so early fear is that their child will be forgotten.

- Tell me what is going on with you, even if it involves your children. Some of the best conversations I've had since we lost Ethan has been about simple, everyday things. I can't promise I won't get teary, or that I don't say things that are awkward, but knowing we can both be honest is so helpful.

There are many other things that can be said that have already been covered by others better than I could express them (particularly spiritual sentiments people will say). You can click the icon above to see Kelly's post (as well as links to others who have lost a child). I also like Molly Piper's post on this topic as well as the others in her series on grief.

Thanks for letting me think things through on the blog once again, and for all the support you've provided along the way!