Good-bye 2012

Another year is ending.  They seem to go by so quickly now.

I remember how upset I was this time last year.  I was not yet blogging,  but I clearly remember my grief at 2011 ending.  2011 was Elena's year.  We learned we were expecting in 2011, then that we would be having a daughter, and then she arrived and we had two short hours with her, and then she was gone.  Life has a way of moving on, even when we are not ready, but at least we were still in 2011.  The new year of 2012 brought such feelings of guilt and despair.  We were moving into a new year without our baby.  We were leaving her behind.  I realize that may sound incredibly silly, especially to someone who has not lost a child, especially since she had already been gone 7 months, but I could not shake the feeling that we were leaving her behind.  I wanted to stay in 2011, somehow it seemed like I was closer to her when the calendar read 2011.  I dreaded moving into 2012 when my sweet daughter could not.  It was so horribly unfair.  Of course, I could no more stop 2012 from coming than I could bring my daughter back, and so 2012 arrived.

2012 brought the last of our "firsts" without Elena:  first new year, first Valentine's Day (surprisingly horrific for me), my husband's first birthday without his daughter, first Easter, first Mother's Day (gutwrenching), Elena's first birthday and the first anniversary of her death.  It also brought the promise of a Rainbow and then the fulfillment of that promise.  What a year!  The last several weeks have been full of mixed feelings, sweet moments, long nights, exhaustion, and joy and have kept me so busy I have not been online as much as before. 

Our beautiful Rainbow is such a blessing to us, and he is so perfect.  His birth was very bittersweet.  He arrived full-term and healthy via scheduled c-section, not the birth that I would have chosen, but I will not complain as I finally carried to full term and had the experience of a healthy, huge (okay, average size, but he seemed huge by comparison) baby.  He cried loudly, showing off his fully developed lungs.  Elena gasped for breath, barely making a sound.  His cry was the most beautiful sound I think I have ever heard!  It should have been the same for Elena.  While I am incredibly grateful that I carried this baby to term, at the same time I feel incredibly guilty that I wasn't able to give that to Elena, that my body failed her.  While I am so glad that we were able to take additional measures to protect our Rainbow, I am full of regret that we didn't do the same for Elena.  If only we had known....  Holding our sweet new baby is overwhelming, it brings feelings of such joy and bliss but also of sorrow and longing.  It is another reminder of all the things we missed with Elena.  It is also a reminder of the beautiful things in life, and that all is not lost.  He is a wonderful blessing and miracle.

In 2012 we became a family of five, though when most people look at us they only see four.  Thank you to those of you who remember we are five.  Thank you to those of you who participated in Elena's Echoes birthday tribute, to those who looked through all of October's Capture Your Grief photos, to those who thought of Elena throughout the year and during Pregnancy and Infant Loss Awareness month in October and during Prematurity Awareness month in November, to those who included Elena in your Christmas cards and gifts, to those who have posted about Elena on Facebook and tweeted about her at various times throughout the year, and to those who have prayed for our family.  Your support, your love, your concern have brought us comfort and helped us continue to heal this year.  We boldly ask that you will continue to support us and to remember Elena and allow her life to echo in 2013 as well.

Giving Thanks Daily

Lots of my friends are doing daily posts on Facebook of things for which they are thankful as we approach Thanksgiving.  Since I just finished the daily Capture Your Grief photo posts, I think I will list my Thankful List here on the blog only.  Here are some of the many things for which I am thankful.

Day 1:  I am thankful for my awesome husband.  He is a strong man of God who consistently shows his love and concern for his family.  He is such a great husband and father!  He was wonderful before Elena was born and has grown even more amazing since her birth.  He has been my rock throughout our journey.  He is always there for me, and I so blessed to be able to call him my husband and my friend.

Day 2:  I am thankful for my sweet and energetic 3 year old son.  I considered him a miracle when he was born, especially doing so well despite his preterm birth.  After losing Elena, I learned what a miracle he truly is!  He brings such joy to our lives every day, and I am so thankful that God has entrusted him to me!

Day 3:  I am thankful for my precious daughter Elena.  She taught me so much during her brief life.  Because of Elena, I have had relationships deepened and developed new friendships.  It is easier for me to focus on the truly important things in life and to let go of the superficial things.  I am glad she is forever a part of our family and am thankful that I will see her again in heaven someday.

Day 4:  I am thankful for my church family and for living in a country where I am free to attend church and to worship according to my beliefs.  My church friends truly are like family to me.  They have shown me such love and support over the years.  Our pastors know us and are concerned with our well-being.  Going to church feels a bit like going home to me, and I love how our pastors keep the focus on God's Word.

Day 5:  I am thankful for our home.  I am so glad that I do not worry about where I will sleep tonight or if I will be warm/cool enough.  I am grateful that my husband has a steady job that pays enough to cover our mortgage and other bills while allowing me to stay home for now at the recommendation of my doctor.  I know we are blessed with so much!

Day 6:  I am thankful that I live in a democratic nation where I have the right to vote.  I am grateful for early voting so that I didn't have to wait in an insanely long line to vote (especially since I had my three year old with me when I voted, and his attention span would not have tolerated waiting hours- ha, even half an hour- in a long line).  I am glad that my son had the opportunity to see me vote and to begin to understand how democracy works.  And I am thankful that this election will be over after tonight and that I won't be bombarded with everyone else's political opinions and rants and awful commercials full of lies and half truths much longer (well, at least not as many as are spewed around election time).

Day 7:  I am so very thankful for officially making it to term today (still hoping for a couple more weeks, though)!  I am NOT going to have a preemie this time!!  I am thankful for my perinatalogist who performed my surgery last year and has closely monitored me throughout this pregnancy.  I attribute making it so far in the pregnancy to a combination of the surgery, modified bed rest the entire pregnancy, extraordinary prenatal care, and mostly the grace of God.  I am so grateful to be so far along!

Day 8:  I am thankful for my education.  I am so glad that I have the skills to read and write and to think and analyze.  I am blessed that my family valued education and encouraged me to work hard in school and to pursue a higher education.  I am grateful for the good schools I attended and the caring teachers and encouraging professors I had along the way.

Day 9:  I am thankful that I have reliable transportation.  I am so glad that it is fairly easy for me to get to where I need (and want) to go on a regular basis.

Day 10:  I am thankful for the ability to just run to the grocery store down the street to get whatever it is that we want/need.  Not only do we have enough to eat, but food is so easily accessible to us and we have such a variety of choices.  I realize this is a blessing that too many both in our country and around the world do not have.

Day 11:  I am thankful for the men and women who served/serve/will serve our country - past, present, and future.  I am so grateful for their bravery and courage, for their willingness to put their lives on the line to protect my freedom.

Day 12:  I am thankful for the Baby Loss Community.  While I wish that it did not exist and that we all had our precious children in our arms, I am grateful for the support and understanding that other bereaved families offer.  This is a club that no one wants to join, and once admitted to it, membership is forever, but there are some amazing women and men on this journey.  I am blessed to call so many of them my friends.

Day 13:  I am thankful for my first child's preschool.  He has been attending the same program for three years, and I have always felt comfortable with him there.  The teacher turnover rate is incredibly low, and the student:teacher ratios in all of the classes are amazing!  His teachers are warm and caring, the office staff knowledgeable and supportive, and the other parents generous and friendly.  He learns so much and has a great time there.  I could not ask for a better school for him.

Day 14:  I am thankful for my family's and my overall good health.  I am grateful for doctors and medications when necessary and thankful that in general we do not need them.  We are so blessed to be healthy and normally able to work, play, and participate in normal activities.

Day 15:  I am thankful for my primary OB.  I am so blessed with the care I have received throughout this pregnancy.  My OB has gone above and beyond to be sure that I am feeling as comfortable and calm as possible.  He has gone out of his way to provide me with reassurance when I was feeling particularly anxious and has monitored me closely from the beginning.  He has a wonderful reputation among his colleagues and has been an excellent doctor for me.  I am glad to have him on my team!

Day 16:  I am thankful for my extended family.  I am blessed with a large support system and many people who love and care for me.  I was blessed to grow up with all of my grandparents and am blessed to still have a grandmother here.  I also grew up close to many aunts, uncles, and cousins, and I am grateful for the relationships I have with them all.

Day 17:  I am thankful for restaurants.  I am grateful for opportunities to dine out, to choose a meal that sounds tasty at that time, to have someone prepare it for me and bring it to me, to not have to wash the dishes when we have an evening out.  I am thankful for the large selection of restaurants in our area and for my husband's job that affords us the ability to go out to eat upon occasion.

Day 18:  I am thankful for my brother.  I am grateful to have had such an awesome person with whom to grow up!  I am glad that he lives fairly close and that I get to see him more than once or twice a year.  I am thankful for his weekly phone calls just to say hi and touch base.  I am also grateful for my two older siblings in heaven.  While I would not wish the pain of losing a child on anyone, especially my parents, I believe their similar experience of losing children (even under completely different circumstances) helps them to relate on some level to our experience of losing Elena, so for I am thankful for them.  I look forward to meeting them in heaven someday.

Day 19:  I am thankful for my dad.  I am grateful for his love and support.  I am thankful that he raised me to go to church each week and provided an exceptional, private Christian school education for me.  I enjoy spending time with my dad and sharing experiences with him, from attending memorial events for Elena with him to going to sporting events with him.  I am lucky that he shares his sports tickets with our family and gives us opportunities to see baseball, hockey, and basketball games each year.  He loves his grandchildren, and I enjoy watching him interact with my preschooler.

Day 20:  I am thankful for my mom.  She is not just my mom but has also become a close friend.  She is an enormous source of support and encouragement for me.  She does so much for our family.  She and my preschooler adore each other, and I am so grateful for the time they spend together and the relationship they have.  It reminds me a bit of the treasured relationship I had with my beloved Nana.  My mom is there to help our family when we need her, like tonight (and the next several nights), when she is keeping our preschooler while we prepare for our Rainbow's arrival.

Day 21:  I am so incredibly thankful for the safe and healthy arrival of our Rainbow this morning.  Our full-term son was delivered on his scheduled date without complication.  I am thankful for his loud cry upon birth and his awesome size.  I am so glad he is here safely and is able to room in with me.  What an incredible blessing this beautiful baby is!  Oh, and he looks nothing like his big brother and big sister - maybe I am getting one that will look more like me this time (since my first two were spitting images of their Daddy).  :)

Day 22:  I am thankful to be able to eat solid foods today.  I am grateful to be recovering from delivery and to be able to enjoy a Thanksgiving dinner.  I am loving my view this Thanksgiving, staring at a beautiful Rainbow while enjoying a special day with the people closest to me!

Day 23:  I am thankful for the hospital staff.  They are taking good care of us.  I am grateful to have good health care and attentive nurses and techs.

Day 24:  I am thankful for being able to go home today, and I am especially thankful for being able to bring my baby home from the hospital with me!  I am grateful for my wheelchair ride today - I've been waiting three pregnancies to be able to ride in wheelchair from the hospital room to the car with a baby in my arms (instead of riding in the wheelchair with empty arms, once leaving my baby behind in the NICU and the next time leaving with my baby in heaven).

Day 25:  I am thankful for stroller walks.  I am grateful for my recovery going well and to be able to go for a walk just a few days after delivery.  I am grateful for a double stroller to take both of my boys for a stroll and for a nice neighborhood through which to walk.  I am also thankful for a beautiful day with perfect weather for our stroll!

Day 26:  I am thankful for our Rainbow's weight gain.  We had some concerns about his initial weight loss in the hospital, but our pediatrician was pleased that he has begun to regain weight (and is close to being back at his birth weight already).  I am grateful for our pediatrician and for the lactation consultants at our hospital.

Day 27:  I am thankful for those who provide meals and help for us during my recovery period.  It is so nice to have people in our lives that bless us and help to make things a bit easier for us!

Day 28:  I am thankful for my camera and for having the ability to record special moments and memories of our lives and our boys' childhoods.  I enjoy looking at those pictures, seeing how much the boys have grown and changed, remembering special times and the magic of ordinary moments.  I am so grateful for the pictures I have of Elena as well; those pictures mean so much to me!

Day 29:  I am thankful for friends.  I am grateful for time spent visiting with them, for cards mailed to us, messages and texts, phone calls.  I appreciate their generosity, their love, and their support.  We have so many friends that we love as family and are thankful for them all!

Day 30:  I am thankful for family time, for my husband's ability to have time off work to spend with us as we adjust to becoming a family of five.  It is so nice to just be together.  We are incredibly blessed. 

Thank you, Father, for all of our blessings, not only during the month of November but throughout the entire year.  Please help us to remember to focus on our blessings, to be generous in sharing them with others, to appreciate them daily, and to give the glory to You, the source of them all.  Amen.

The Journey in November

I am linking up again this month with Still Standing for this month's journey.  I was working on this entry yesterday, focusing on the anxiety that comes with a Rainbow pregnancy.  I was a little surprised to find that Tara's blog entry was along a similar theme!  Congratulations on your Rainbow pregnancy, Tara!

Elena's little brother is scheduled to arrive in just over two weeks.  I have been so focused on STAYING pregnant that I have not given much thought to the pregnancy ending (other than fear that it will end too soon).  I have finally begun to realize that this is REAL, though I still struggle with fears that even if I do make it to full term (tomorrow!) that there will be something that prevents me from taking this baby home too.  I feel bad for thinking like that, for not being confident that this baby boy is really going to be okay, but I'm just terrified that he might not be.  Perhaps it is because of my most recent experience with having a baby and not getting to keep her, or maybe it's just that I know too many women (both in real life and online) in the community who have not only lost one child but have lost their rainbows too.  I'm not naive.  I know that I lost Elena due to prematurity, but I'm not ignorant to the fact that prematurity is not the only reason that women lose their babies.  I know something else could go wrong, and I'm scared that it will.  I actually asked my (Christian) OB at my last appointment to please make sure the baby is baptized if something goes wrong during delivery.  He agreed, but it was clear that it was a request that no one else has ever made of him.  That's a part of my "new normal," I'm not really "normal" anymore.

Since realizing that this pregnancy is almost over (and that it is perfectly okay and normal that it's almost at the end), I am now frantically trying to get things ready, things to which I have not given much thought (like setting up the bassinet, getting clothes ready, buying diapers and wipes, the simplest basics).  We finally bought a package of diapers and wipes over the weekend, and my husband took out the boxes of baby clothes for me to sort and wash.  I am just starting that task.  The first load of receiving blankets and some pajamas was easy to throw in the washing machine - they are all items that have already been used previously.  I struggled, however, with the next load.  It took all day long to bring myself to take the tags off of anything that is new for this baby.  I don't know what my problem is.  It's like I was afraid of washing them and making them no longer "new."  Tempting fate to prepare for things to go right?  But it's awfully hard to pack a hospital bag when baby's clothes still have the tags attached!  I also realized that I have no idea what outfit I want the baby to wear in his hospital pictures (or if I even have an outfit that I like well enough for hospital pictures), and I'm scrambling to find a baptism outfit that I like (I have in mind exactly what I want but can't find it online and will not be getting out to the stores).  There is still so much to do, and I'm (finally!) starting to think about what needs to be done!

I think I'm still in a bit of denial.  I have mixed feelings about this pregnancy ending.  Of course I am very excited and want so badly to meet my new little guy and to just to hold his full term weight in my arms and hear him cry loudly!  I still can't comprehend the idea that I may get to take this baby home with me when I leave the hospital!  It's an incredible thought, but though it's my third baby, it's still an abstract concept.  I am also trying to come to grips with the fact that I will have a section this time.  Believe me, I know the most important thing is that the baby arrives healthy and full term, and if a section would have saved Elena there would have been no hesitation to have one, but a part of me is mourning the fact this baby will not arrive "naturally."  Childbirth was quick and easy for me the first two times (it was staying pregnant long enough that was the challenging part).  I wish I could experience another natural childbirth with a happier ending (instead of the first scary one and the second heartbreaking one).  But again, I know the happier ending is far more important than how baby arrives.  I'm just a little sad (and a lot scared).

And most of all, I'm finding myself missing Elena especially hard at the moment.  I see all the baby things everywhere, and I can't help but be wistful when I see the girl things.  I ran across a beautiful 12 month Christmas dress today while looking for a baptism outfit, and I wished so much that I had a reason to buy it.  I wish that this little boy would be able to know his big sister.  I wish that our new family pictures that will soon be taken would have all five of us in them, instead of missing someone.  We are always missing someone, even in the midst of such a wonderful time as we prepare to meet our newest miracle blessing.  And while we are ecstatic about his upcoming arrival, he is not a replacement for Elena.  He is his own person, a miracle blessing in his own right, and we love him immeasurably.  And we love our preschool son, our first miracle blessing, immeasurably.  And we love Elena, our second miracle blessing, immeasurably, and we miss her so much.  We love them all and wish we could hold them all.

Our first son, we are so proud of the big boy you are becoming!  Our sweet Elena, we miss you and can't wait to see you again!  Our new baby boy, we are so excited to meet you very soon!  We love you all!

Capture Your Grief

CarlyMarie is hosting a Capture Your Grief photo project this October for Pregnancy & Infant Loss Awareness Month.  Each day in October features a different subject for a photograph.  I have been posting them daily on Facebook but decided to go ahead and share them here (in a single entry) as well.

I made it through the entire month!  When I started this project, I was planning to participate in some of the days.  I hoped to get a picture done for each day, but it seemed a bit overwhelming, and I thought that if I got at least a few pictures, I would have accomplished at least something.  I am so happy to say that I did them all!  I really enjoyed reflecting on the subjects, revisiting lots of photographs and taking new ones, and sharing Elena with family and friends each day for an entire month.  Thank you for letting me share her with you!

Day 1:  Sunrise.
Today is the anniversary of Elena's due date. A sunrise begins a new day; a year ago today "should have" begun Elena's life on earth.  (I wrote about this photograph on the blog on October 1.)

Day 2:  Before Loss Self Portrait.
This picture was taken about a month before Elena was born. It was such a wonderful day!
(Photograph of my son and me at the zoo in April 2011.)

Day 3: After Loss Self Portrait.
This photo is not technically after loss, as Elena was living when it was taken; however, we knew she would not survive when she arrived. I am so very thankful that our nurse suggested photographs while Elena was living. I treasure each picture of Elena that I have. I miss you Sweet Princess! ♥
(Photograph of me holding Elena shortly after her birth.)

Day 4: Treasured Item.
"How very softly you tiptoed into my world, almost silently; only a moment you stayed. But what an imprint your footprints have left on our hearts." -Dorothy Ferguson

 

Day 5: Memorial.

These are the flowers at Elena's memorial service.



Day 6: What NOT to say. (I actually wrote a blog entry on this subject a couple months ago.)

These are a few of the hurtful things said to me after we lost Elena.
Yes, I know I am blessed to have my son. I still want my daughter too. His existence does not make her death okay.
I could have a dozen more children, but no one will ever take Elena's place. One child cannot replace another. I will always miss her.
I don't want my child to be my guardian angel. I wanted so very much to be the one to protect her - that was my job as her mother. (Not to mention the fact that I believe my child is a Princess in His Kingdom, not a guardian angel at all, and I do not want to think of her as being burdened with the problems of this world.)

Day 7: What TO say.

My belief is that the only comfort we have is in our Lord and the hope of eternity. Knowing others were praying for our peace and comfort helped.

Just as any other parent does, I enjoy having my child acknowledged, even if she is no longer here. I LOVE hearing her name spoken. I remember someone telling me shortly after her death that her name is beautiful. That memory still makes me smile.

Less is more! A simple and sincere I'm sorry goes much further than most people know. The acknowledgment of our grief and our loss is important to us.

A friend said, "No words are adequate." She is right. Actions often are much more powerful. I will forever be thankful for those who hugged me, held my hand, and just sat with me and cried with me, even though no words were spoken.

Day 8: Jewelry.
After Elena passed, two dear friends gave me this beautiful heart with Elena's monogram on the front and her birthdate on the back. ♥ I wear it every day. I also have two necklaces that include Elena (one a locket with her and her big brother's photos - they looked just alike as newborns!).
(Photograph of Elena's engraved heart charm on a charm bracelet.)

Day 9: Special Place.
This is the Prayer/Memorial Garden at our church. Elena's ashes were scattered here, and we bring flowers for special days and release balloons on anniversaries.  Our preschooler seems to enjoy spending time here as well, asking to go to the prayer garden after church from time to time. I feel blessed to have a place to pray and reflect that has so much meaning for our family.

 

Day 10: Symbol.
This angel holding a baby reminds me that Elena is safe and cared for in Heaven, with angels attending her in the presence of our Lord.

 

Day 11: Supportive Friends/Family.
These are cards, flower notes, and memorial gift notifications we have received. So many people have shown us such love and support on our journey, from letting us know they are thinking of us and bringing us meals to providing gifts and lending us shoulders upon which to cry. Thank you to everyone who has supported us on this road.
I have shared this before, but it is worth repeating. I still remember feeling blessed on the day of Elena's memorial service when I looked up and realized how many people came to love and support us (and knew how many more were with us in spirit). It was one of the hardest days of my life, and it was such a blessing to know that I have so many people who care. Thank you. ♥

Day 12: Scents.
When I was carrying Elena, I craved Long John Silver's so much! In fact, it was the last meal I ate before I ended up in the hospital. It was sooo good - ha! I went this week to get the picture and decided to go ahead and pick up some fish too. Gross! How did I stomach that so often with her?!? LOL! The smell of that fried fish sure does remind me of being pregnant with her, though.

Day 13: Signs.
I don't really believe in signs from Elena (I prefer to think she is so busy enjoying the majesty of heaven that we will be with her before she even realizes we aren't there yet), but I do believe that His Holy Word provides assurance that Elena is safe at Home and that we will someday be reunited for eternity.

Day 14: Community.
Bagpipes played at M.E.N.D.'s Walk to Remember this year.

Day 15: Wave of Light.
October 15 is Pregnancy and Infant Loss Awareness Day. Everyone was encouraged to light a candle from 7:00-8:00 p.m. to create a continuous wave of light around the world for 24 hours. Here is our light between Elena's angel and her Molly Bear.

Day 16: Release.
On Elena's due date, October 1, 2011, we attended our first M.E.N.D. Walk to Remember. The ceremony concluded with an amazing balloon release. It was so special to see all those balloons being sent with love in memory of our babies.

Day 17: Anniversary/Birthday/Due Date.
We spent Elena's due date at M.E.N.D.'s Walk to Remember. We received the angel ornament on the left with her name and birthday to hang during the Recognition of Babies when her name was called. The ceremony concluded with a beautiful balloon release (see Day 16). For Elena's birthday, we visited the Memorial Garden at church and released a Happy Birthday balloon as well as three pink balloons (one from each of us). Later in the day, we joined my mom as she delivered gifts of preemie clothing and some candy to the NICU at our hospital in memory of Elena.

Day 18: Family Portrait.
Today's photo was to incorporate our baby into a family portrait. We decided to wear our Halloween shirts and to find a similar outfit for our Elena Molly Bear. Here is our family of soon-to-be five!
(Photograph of my husband, preschooler, and me wearing Halloween skeleton shirts. My shirt has a baby skeleton on the belly, and my preschooler is holding our Elena Molly Bear, which also has a skeleton shirt.)

Day 19: Project.
I have done a few projects inspired by Elena.  One of them was an Acts of Kindness birthday celebration.  We wanted to celebrate Elena's birthday by asking family and friends to do acts of kindness in her memory, and we wanted to record how her life has touched others, so I started the blog in her memory to give me a place to write what others do in her memory (and to write about her in general).

Day 20: Charity/Organization.
Mommies Enduring Neonatal Death (M.E.N.D.) has significantly touched our lives. M.E.N.D. is a Christian, non-profit organization that offers numerous supports to families who have lost children due to infant death, stillbirth, and miscarriage. All of their services are offered at no cost to families, and they operate strictly through volunteers - there are no paid employees. For more information about this awesome organization, visit www.mend.org.

Day 21: Elena's Space.
Today's subject was a special place in our home dedicated to our baby.  We have a shadow box with several of Elena's things displayed in our family room.  It has her hospital band, her handprints and footprints, her dress and bonnet along with a picture of her wearing them, her ring, her blanket, her baptism certificate, the rose the hospital placed on my room door to indicate we had lost our baby, and the rose corsage I wore to the Walk to Remember on Elena's due date.

Day 22: Place of Care/Birth.
A suggestion for today's photo was to share a picture of someone who took care of my baby and me.  While the nurses in the hospital did help to take care of me, it was my husband who did the most for both Elena and me.  He has been an incredible source of support, from the first sign of complication to today.  He understands in a way no one else possibly can - he is Elena's only other parent.  I look at this picture and see the love he has for his daughter and for me, and I am so grateful.
(Photograph of me holding Elena in the hospital bed, with my husband kneeling beside us, one arm around my neck, the other hand holding my hand as we both gaze at our precious daughter.)

 

Day 23: Their Name/Their Photo.
Today's subject encouraged us to share our baby's picture and name.  Her name has such meaning to us!  Elena is a shortened form of my paternal grandmother's middle name and means "light."  Marie is my middle name, my mother's middle name, and was the middle name of my husband's paternal grandmother.  I have seen a few meanings for Marie - my favorite is "wished-for child."  ♥

Day 24: Siblings.
Our son continues to talk about his little sister. While I am so thankful that he was at the hospital and got to meet Elena, one of my biggest regrets is not getting a picture of both of my children together. Here is our son with our Elena Bear before bed.
(Photograph of our preschooler sitting in his chair holding our Elena Bear.)

Day 25: Baby Shower/Blessing.
We did not have a baby shower for Elena, but as soon as my mom found out we were having a girl, she bought this tutu and headband set for Elena. I was so looking forward to dressing her up.

Day 26: Their Age.
Elena lived for 2 hours and 17 minutes. I treasure each of the 137 minutes we had with her.

Day 27: Artwork.
Elena's name was written in the sand at Christian's Beach by CarlyMarie last November.

Day 28: Memory.
One of my most significant memories is of my husband baptizing Elena as soon as she was born. The chaplain had not yet arrived, and since we did not know how long we had, we did not wait. That precious moment means the world to me, and I hope it is a moment that I remember vividly until I am called home too.

Day 29: Music.
The song "This Little Light" makes me think of Elena every time. It is actually the song that was playing on the radio when I decided that Elena was the name I really wanted for our daughter, as Elena means "light." She is my little light.

Day 30: Your Grief - Tell the World.
Today's topic asks, "What do you want the world to know about this road you are traveling?...Write it down..."
I want the world to know that I will never forget my sweet baby girl nor do I want to forget her. It really is okay to talk about her; in fact, it is healing for me. Please do not ever hesitate to mention her, talk about her, or ask questions about her. Elizabeth Edwards said it well when she said, "'If you know someone who has lost a child ... and you're afraid to mention them because you think you might make them sad by reminding them that they died, they didn't forget they died. You're not reminding them. What you're reminding them of is that you remember that they lived, and that's a great, great gift."

Day 31: Sunset.
This is a picture of sunset from earlier in the year (I did not even attempt to get a picture of the sunset on the 31st). The sunset is the end of the "Capture Your Grief" photo-a-day project. I enjoyed sharing Elena each day in October to promote awareness of infant and pregnancy loss. Thank you for taking the time to look at my pictures and to remember my precious daughter! ♥

 

Pregnancy & Infant Loss Awareness Month

A friend posted the following passage and invited anyone to share it, so I am sharing it here:

"October is National Pregnancy and Infant Loss Awareness month. Each year in the US, there are approximately 2,024,000 infant deaths.

600,000 miscarriages (under 20 gestation)
1.2M terminations
64,000 ectopic pregnancies

6,000 molar pregnancies
26,000 stillbirths
27,860 infants die before their first birthday

Breast Cancer is horrible...about 40,000 people die each year from breast cancer. But over 2M babies die each year. Society doesn't always embrace families who have experienced the loss of a baby through miscarriage, stillbirth or early infant loss - sometimes acting as if the family should just move on, forget about it, or "you're young, you can have another". The grief can be painfully silent and lonely for families.

Someone you know has been affected by infant loss. Acknowledgement of the loss of their child's life means the world to them...tell them you remember!!! That they are not alone. Ask them to talk about their loss - you listen! Let them tell you about the dreams they had for their child, the wonderment of what they'd be doing now or what they'd look like. Help them find help if they need/want it."

 

If you know someone who needs/wants support, please share M.E.N.D. with them.  M.E.N.D. has 10 chapters in 5 states as well as online support for families who have lost a child.

 

Please help us to remember these precious lives that were lost too soon.

 

We miss you, Elena!

Walk to Remember

October is National Pregnancy and Infant Loss Awareness Month.  M.E.N.D. hosts an annual Walk to Remember each October to honor our babies who have gone ahead of us.  The Walk is more of a ceremony than a walk, with memory tables set up for parents to bring pictures or other memories to share of their babies, a short walk from the church to the outdoor ceremony site in front of the pond, memory signs along the walk path, songs in remembrance of our babies, recognition of each baby by name, hanging of ornaments on a tree as each baby's name and birth and death dates are read, a guest speaker, and an amazing balloon release at the end.  Although the reason for the Walk is heartbreaking, and it brings up lots of memories and tears, it is an event that also inspires hope and provides a sense of recognition and pride for our babies, who are certainly blessings even if they are no longer on earth with us.  Last year the Walk happened to fall on Elena's due date, and I am so incredibly thankful that we were able to mark the occasion in such an amazingly meaningful way.  I have been so touched by M.E.N.D. that I volunteered to be on the Walk committee this year.  What a blessing it was to be part of the committee and to be involved at a much deeper level this year!

The 16th Annual Walk to Remember was on Saturday.  This year's Walk was led by a bagpipe quartet, which lent so beautifully to the atmosphere.  After everyone was seated, the bagpipes went to the front and played "Amazing Grace."  It brought tears to my eyes.  Then Rebekah Mitchell, founder of M.E.N.D. and mommy of Jonathan Daniel, welcomed everyone to the Walk.  An opening prayer was said followed by Nicol Sponberg, founding member of the Christian group Selah and now solo recording artist and mommy of Luke, singing "We Stand."  Her voice is as beautiful live as it is on the radio, perhaps even more so.  Then our babies were recognized by name, and we were invited to hang their personalized ornaments on the tree.  My dad joined me at the ceremony (actually, he helped set up the night before and the day of the Walk as well, almost as if he served on the committee himself - I felt so honored and blessed by his support).  My two older siblings, both born into heaven, were recognized along with Elena.  The Recognition of Babies is the longest portion of the ceremony, as sadly there are far too many babies who have died (for this year's Walk, we had 320 babies registered).  After each baby's name and dates had been called and all the ornaments hung, Nicol Sponberg sang "Resurrection" and then delivered an inspirational message, sharing her story of her beautiful son Luke who died of SIDS just weeks after attending the funeral of her baby niece Audrey Caroline (Angie & Todd Smith's daughter).  I cried the entire time she spoke.  Her message was so heartfelt and sincere.  (I also was blessed with the opportunity to speak with Nicol for a couple of minutes after the Walk, and she talked with me with such a beautiful, tender, and loving spirit - what an amazing woman!).  After her message she sang "Home," which was played at her own son's memorial service.  I cannot say enough how wonderful it was to have Nicol be part of the Walk and how blessed I feel to have been able to hear and meet her.  The balloon release concluded the ceremony.  The release is such an amazing sight, with over a thousand pink, blue, and white balloons floating towards the heavens (each person attending receives a balloon for each baby s/he is remembering, pink for baby girls, blue for baby boys, and white when unknown).

I am so grateful for the love and support I have received from M.E.N.D.  I have met so many incredible mothers (and fathers) through this organization.  While we all wish we did not share the bond we have with one another, it is such a blessing to have these parents who truly get it, who understand this journey, who recognize what a loss we have experienced, who readily acknowledge and speak about our unseen children, our babies who remain constantly in our hearts and minds no matter how much time has passed since they returned to heaven, these loving parents who provide so much support, encouragement, and hope.  Thank you, Rebekah, for founding M.E.N.D. and for all of your work and dedication, and thank you to all of my M.E.N.D. family!



 

Bagpipes lead the Walk

Rebekah welcomes guests

Nicol Sponberg sings

Elena's ornament

Ornaments for my siblings



Balloon Release

The Journey in October

This month's Journey at Still Standing snuck up on me.  It seems like I just finished writing last month's entry.  Time is such a funny thing.

Yesterday was Elena's due date anniversay.  Yesterday was hard, but not as raw as it was last year.  A year later (actually already more than 16 months later) I still feel cheated.  I suppose it's a feeling that will stay with me.  I hate dwelling on the "should's" because, really, who says what "should" and "shouldn't" be?  It sounds whiny and self-pitying, and I don't want to live in that place.  I want to find some sense of joy in life, not that I will ever "get over" my daughter, not that I will ever forget her or stop wishing that she was here, but I don't want to live in a place of hopelessness and despair.  I want to carry her loss with a sense of grace and dignity, to honor her life and ensure that something good comes from it, that her two hours here were not in vain.  I want to cling to the hope I have in Christ that I will embrace my sweet daughter again, that "He will wipe away every tear from their eyes.  There will be no more death or mourning or crying or pain..." (Revelation 21:4).  I want my life to reflect that hope.  Yet I still struggle, especially on anniversaries and holidays, with the "shoulds."

I should have been able to give Elena a huge first birthday celebration, just like her big brother had, and to watch her have her first taste of cake.  I should have a sweet one-year-old now, or should it be a 16 month old?  I struggle with that too, how old "should" Elena be?  Somewhere between 12 and 16 months, but where?  Would she be walking and saying her first words?  If she had lived, would we be dealing with significant effects of prematurity?  Would she have breezed through all of the challenges of an early birth just as her big brother did?  Not that it matters much, I would give everything to have her here, even if we did have to face some challenges.  She is my daughter, and I love her no matter what, and I want her so much!  I hate that I have to miss out on her entire life, on everything that "should have been," every milestone never to be achieved, every smile, coo, cry, word, snuggle, step, laugh.  She should have had the opportunity to experience all that life has to offer; instead, she had two hours in a delivery room inside of a hospital.  I want to give her so much more!

But where does all that get me?  Where does it get my family?  My mind goes there at times, but I try not to stay there.  I attempt to keep my focus on Home, where Elena is, where I will someday join her, where I know she is safe until I arrive there too.  And to keep my focus on the blessings I have here on earth, too numerous to even list.  And to focus on what a blessing Elena was and is, and how even if I couldn't keep her, I would not give up the time I had her for anything in the world.  That focus makes me smile, gives me a little peace, a bit of comfort, a taste of joy.  What I understand now (that I was not able to truly believe a year ago) is that feeling truly happy from time to time does not take away from Elena's memory, does not mean that I love her or miss her any less.  And I will admit that there are still times when I feel a pang of guilt when I am happy, but I no longer feel like a monster when I can find moments of happiness.

I feel like I have walked quite a distance on this grief journey and have changed immensely on the way, but I know that I am still just beginning.  I still have a long way to go.  I don't believe this grief journey will end until I am called Home.  After all, my precious daughter Elena is a huge part of who I am.  She always will be.  And for that I am truly thankful.

Due Date Anniversary

Today "should be" Elena's first birthday.  She was due the first of October, one year ago today.  I remember my preschooler's first birthday, and I so wish I was having a similar celebration for Elena today.  Instead, her birthday celebration was months ago, and instead of a big party, it was just our "little family" writing messages on balloons and releasing them into the sky, watching them soar toward the heavens until we could no longer see them, doing our best to explain to our son why his little sister was not here to eat her first piece of cake, sitting in the prayer garden thinking of all the things we wish we could say to our daughter, longing to hold her instead of settling for remembering her.  I am so glad to remember her, though, and so thankful that our little family, as well as some of our extended family and dear friends, continue to talk about her and to celebrate her life instead of trying to flee from the memories and ignore her importance.

October is Pregnancy and Infant Loss Awareness Month.  Carly Marie is hosting a Capture Your Grief photo project this month.  I decided to try to participate and took Day 1's photo this morning.  The subject for today was "Sunrise."  As I reflected on the subject, I thought about how the sunrise is a beginning.  The start of a new day.  I guess it seems a bit appropriate for me that the start of this project just happens to coincide with the day which "should have been" the day Elena's life started on earth.  We dreamed it would be the beginning of our lives with a daughter in our home.  The sunrise one year ago should have welcomed Elena to earth, and the sunrise today should have started her second year in our arms.

After Elena died, I was obviously upset (there's an understatement!), with everything and everyone.  I remember feeling a bit satisfied with the rainy, overcast day.  Good, I thought when the dreariness of the day showed itself.  It should be rainy and gloomy, just like I feel.  The sky should cry for her.  She deserves nothing less than for the world to stop and mourn her.  I was angry the day of her memorial service, the Saturday of Memorial Day weekend, angry that the weather was beautiful and that the sun dared to shine on the day we publicly remembered our precious daughter's much-too-brief life.  How dare the sun rise that day!  How dare it be a lovely day when my daughter was not here with us.  How could life go on without sweet Elena?  But it did.

The sun continues to rise, every morning, without fail.  And we continue to remember our precious daughter, constantly.  She is always in our hearts and on our minds.  We may talk about her more around anniversary dates and holidays, but we think about her even when we do not speak her name out loud.  That is as constant as the sunrise every morning.

All of our love, Sweet Baby Girl!  We look forward to our reunion and celebrating with you in eternity to make up for all we are missing with you here on earth.  Happy First "Corrected" Birthday!

Our Elena Bear

Yesterday I received a much anticipated package in the mail from Molly Bears.  I have been anxiously waiting for our Elena Bear to arrive.  I carefully opened the box and found our Elena Bear inside.  I picked her up and cradled her, in a bit of awe over the weight.  Just shy of a pound, a substantial weight for such a small teddy bear, yet so light.  The same weight as Elena, and very similar in length as well.  She has a white bow on her head.  It actually reminds me a little of the white bonnet Elena wore in the hospital.  It felt nice to cradle the bear in my arms and to remember cradling my sweet Elena for that brief time.  How I miss holding her! 

 

I am so grateful to have a special bear from Molly Bears.  A small comfort to feel the same weight as my sweet daughter in my arms again, a reminder of her, it somehow seems a nice way to honor her memory.  I think it will also be another concrete way to help our son talk about his little sister and to teach our rainbow, when he arrives, about his big sister in heaven.  Thank you, Molly Bears, for this personal gift.

 

 

Reassurance

After keeping a panic attack at bay for months, I finally succumbed to it this morning.  My nurse called with my glucose test results (I passed the three hour test - yea!), and I dumped on her my probably normal symptoms and my anxiety.  Yes, I had a sonogram just last week; yes, I see the high risk specialist later this week; and yes, I do want to come in TODAY to be seen.  I finally had my "anxiety appointment."

I am more than 8 weeks farther in my pregnancy than the point at which Elena was born.  I am just a few weeks away from the point at which my son entered the world (my healthy, meeting-his-milestones preschooler who does not appear any worse for the wear after his preterm birth).  I thought I would be calm after I reached viability, and I did feel a bit more relaxed for a while.  The anxiety has been creeping up on me again over the last week or so.  I finally decided that I don't care if I get the reputation of crazy, paranoid pregnant lady who is overreacting because her last baby died.  I just had the awful sense that something was not right, and I would rather be proven wrong today than to wait to see my MFM later in the week and to be told, "I am so sorry, but I can't find the heartbeat" and then live with the regret of not taking action.

I dreamed last night (when I was able to sleep - insomnia has been hanging out with me again) that I was trying to decide if I should go to the hospital to get checked since I was just feeling uneasy.  That had been the reality of my weekend - debating if I should go get a peace of mind doppler on my belly or if I just needed to relax.  In my dream I went to the bathroom and found that I was bleeding heavily.  I knew I had to go in at that point, that something was indeed wrong.  I woke up to find that I was okay, but I thought, "This is ridiculous.  I do not need to be this stressed out over the situation.  I need to go ahead and see the doctor, even if there is no logical reason, even if it is just so that I can sleep again."  Even my very logical, level-headed husband, who does not overreact in emotional situations, had no objection to me asking to be seen and agreed to meet me at the doctor to entertain our preschooler during the appointment.  I am so grateful for how supportive he is!  So I rambled every concern running through my mind to the nurse, and she invited me to come in right away.

My doctor was wonderful.  He actually told me that he was surprised I had not called earlier this pregnancy asking to be seen because I was worried.  He said there was nothing pathological in my anxiety, especially given my "horrible obstetric history."  It was nice to be reassured and not to be criticized in the least, not to be made to feel one bit bad about an extra visit (and though I was prepared for an eye roll or a lecture, neither came).  On top of that, he went above and beyond medically to make sure we had covered every base and that nothing concerning was happening.  Everything looks fine.  Apparently my vague feelings of "something just isn't right" was not "mother's intuition" but just plain fear and anxiety.  Huge sigh of relief!

I am so thankful and so blessed to still be pregnant.  I know that every day.  I am also blessed with outstanding prenatal care, and I am so grateful to have the medical team supporting me that I do.  But wow, pregnancy after loss is hard - not that I would wish it away, mind you!  It is just a huge rollercoaster.  I am praying that I can keep my emotions in check for the next couple of months, to trust that things are going fine and that I can have a "normal" pregnancy with a good outcome, that today will be my one and only "anxiety appointment."  And I am so thankful for reassurance.

The Journey in September

I am linking up again this month with The Journey at Still Standing. 

September.  (sigh)

My birthday is almost here again.  Elena's due date is in a month.  She "should" be almost one year old (and yet we celebrated her first birthday a few months ago).  I suspected she would come before her due date.  I had hoped she would be my birthday present, perhaps make the day a little happier again. 

My birthday had become bittersweet.  My Nana died on my birthday 4 years ago.  She never got to hear the news that she would be a great-grandmother.  We found out we were expecting a baby just two months later.  I wish I had told her that we were trying.  She died suddenly, unexpectedly, and I miss her so much!  I was heartbroken that she was not here to meet our son.  I wondered if she knew in heaven that we now had a child. 

When we learned that our next child was due a couple of weeks following my birthday, the anniversary of Nana's death, I wished that we could make it to that day.  It would be a special day, and it was close enough to the due date that the baby would be considered term.  When we learned the baby was a girl, I was ecstatic and knew that we would name her after Nana.  How cool would it be to share my birthday with my daughter, who was named for my Nana, who died on our birthday?  I didn't dream that Nana would be the one holding her namesake each day instead of me.  I don't wonder anymore if Nana knows that we have children.

Now my birthday is even more bitter and less sweet.  Not only do I miss my Nana, but I miss my daughter.  My birthday is a reminder of lost dreams and broken hearts, of unfulfilled wishes and unspoken pain.  And then Elena's due date, beginning of October, the same day as my brother's birthday.  Another sweet day soured by death.  Oh how the numbers on the calendar sting my heart!

Elena, Sweet Princess, I love you dearly and miss you daily.  Hug Nana for me. 

Nana, I love you and so wish you hadn't left so soon.  Please take care of my baby girl until I join you both.

Nightmares

Early in my pregnancy with Elena, I dreamed that she was born too soon and the doctor told me it was too soon to do anything about it. Obviously not a pleasant dream, but I just attributed it to worry since my first child was premature. I don't think I really believed that nightmare would become my reality. My husband would later tell me (after Elena's birth and death) that he had similar bad dreams of Elena arriving too early and not surviving (though his occurred during the time I was hospitalized, after we were told that it would be a miracle if I made it to term). I don't really know what to make of those dreams. I don't believe that I possess psychic abilities; in fact, I am quite suspect of anyone claiming to have them. I simply don't put much stock in things such as those most of the time. It bothers me, though, that we both dreamed what later happened.

After Elena died, I was discharged from the hospital that same day. It was a Monday. For the first time in over a week, I slept in my own bed (if you can call that first night sleep, I think at some point I simply passed out from exhaustion for a few hours). That night, I dreamed that my husband died...twice in the same nightmare. The first time he was shot while outside. I was terrified. Later he walked back into the house, and I was momentarily so relieved. He did not look well, however, and said something to that effect. Then he collapsed and was dead (again). I awoke, glad to realize it was just a nightmare. Except that it wasn't - I mean the part about my husband was, but Elena was still dead. That was the nightmare from which I would never awake. And I had to face going to the funeral home that day.

The second night back home, nightmares haunted me once more. This time I dreamed that my son, who was not quite two at the time, ran into the street in front of a car...again and again and again. It was as if it was a recurring dream, all rolled into one hellish nightmare. I awoke the next morning and to my relief found my son and my husband both alive, but to my horror, my daughter was still dead. It was not just a nightmare. I so desperately wanted to wake up from that nightmare too (I still wish I would just wake up). That day I would have to finalize the decisions about our final plans for her.

I don't remember specifically if the nightmares continued to haunt me during sleep (they bugged the hell out of me during the day, though - they were so vivid and so disturbing and left me with such a feeling of dread). I know they eventually stopped...for a while.

Five months later the nightmares started again. Again vivid and frightening. I would awake and spend the entire day in a sort of fog, overwhelmed with dread, even panic at times. They would shake me to the bones. Thankfully they seemed to stop as suddenly as they had returned.

Then a few weeks ago I had another terrifying and vivid nightmare about my son (now three). I dreamed he was outside with his dad, who was working on (or maybe washing) the car. Apparently he had gotten bored with "helping" dad and had wandered into the yard. We found him floating face down in the pool. I was horrified that he had drowned while I sitting inside the house in the room closest to him, and his dad was just on the other side of the fence. Both of us just steps away, and yet he died anyway. I awoke, and of course he was fine, and Elena was still dead. I wanted to fill in the pool with dirt, or maybe move. I still do (despite the alarm on the doors and the locked fence around the pool).

Later the same week, while eating lunch, my son said the oddest thing. He looked at me across the table and said, "My clock is going to stop." Then he patted his chest, over his heart. I tried to ask him, as casually as possible, to explain more (while inwardly freaking out - what was THAT about and where did it come from???). But as three year old boys are prone to do, he quickly bounced to a new topic and was not interested in talking about clocks any longer. I was tempted to make him skip his nap that afternoon (and bedtime too, and every nap and every bedtime from now on). Then a couple of  weekends ago, we had an actual scare with him. The gravity of the situation, and being REAL this time, knowing things could have ended tragically, left me hysterical. I cannot remember the last time I sobbed as violently as I did for as long as I did - I suspect it was shortly after Elena died. I still feel sick to my stomach to think of it. Thankfully, blessedly, my son is still alive and well, but again, tragically, my daughter is still dead. I still have not woken up.

Perhaps that is what heaven will be like...waking up from this nightmare. This earthly life may pass away like a fleeting dream, and I might realize that this life was just a restless night full of crazy ups and downs. And I will have eternity in the brilliance of the sparkling daylight of my Lord with Elena and all those I love, forever, and the darkness and nightmares will cease to exist. 

"There will be no more night.  They will not need the light of a lamp or the light of the sun, for the Lord God will give them light.  And they will reign for ever and ever."  Revelation 22:5.

The Journey in August

I am linking up with Still Standing for August's Journey.  This is an opportunity to share where we are on the journey.

I am struggling to articulate where I am today.  It seems to be a moving target.  The constant is that I miss Elena so very much!  In the early days, the grief was nearly unbearable, but people tried to be understanding and acknowledged our daughter.  Now we are a little over a year from her death.  I have learned to better carry the pain so that it does not feel quite so acute most of the time (though the pain does not go away), but people are not as quick to realize that I still hurt or to acknowledge that I even had a daughter at all, as if the lack of mention will somehow make us forget.  I will not forget my baby.  I do not want to forget her.  She is, and always will be, a part of me.  And although she may not live on this physical earth, she does live in heaven, and she also lives in my heart and in the hearts of her dad and her brother and other loved ones.  We all miss her, and we regularly talk about her in our home. 

This week I am facing a significant change in my life.  For the record, I am not a fan of change, particularly when it is out of my control.  Unfortunately, this is a change out of my control, a decision that has been made for me (that was quite the opposite of the decision that I had chosen to make myself when it was "in my control").  Another reminder that we seem to cling to an illusion of control.  We desperately desire to believe that we are in control, of ourselves, of our lives, of our futures.  We often believe that we do have the control, that we are in the proverbial driver's seat.  Then life laughs at us. 

I had planned my family and found a way to balance that, in a way that blessed our family, with my career.  Although I didn't carve my plan in stone, I did have a general idea of how I wanted to space my children and what I wanted them to have in life.  Life laughed and handed us a premature baby (who, by the grace of God, is now a beautiful, healthy preschooler).  Life laughed again at our plans and gave us another premature baby, this time a daughter whose prematurity was fatal.  Again, all of our hard work and planning were derailed.  Everything was completely out of our control.  Our family would have done anything in our power to have been able to keep Elena, to have spared her from death, but there was nothing we could do.  We were powerless; any illusion of control vanished before our eyes as our daughter's life faded away in our arms.  So I suppose this most recent change should not come as a shock to me.  I should already know that control is only an illusion.

I found myself thinking of a Bible verse this morning.  It is often quoted, and I have heard it many times both before and after Elena's death.  Jeremiah 29:11:  "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."  I know that God has a plan for me, even when I do not understand it.  I try to keep my faith there and to know that even though Elena's death was not a good thing, that God can still somehow use her life and our love for her to bring something good for His kingdom.  But what really struck me about the verse this morning is that it does not say that God knows the plans that I have for myself and my family, that God will prosper me and give me a future when I carefully plan my life and make decisions with the intent of getting to where I want to go.  It says that God knows the plans that HE has for me.  HIS plans will prosper me and give me hope and a future.  I would rather God be in the driver's seat - He has a much better view of the road ahead.

I still miss Elena.  I still ache for her.  I think of her all the time.  I think of her, and I smile.  I think of her, and I cry.  I long for what might have been.  I crave the other outcome, where Elena had lived and was in our home now, where I didn't wonder how to answer how many children I have, where I didn't have a box full of new baby girl clothing with the tags still attached, where I could talk freely about each of my children without bringing conversations to screeching halts, where I heard each of their names spoken on a regular basis.  And I cling to the hope that my Lord gives me, that I will embrace my sweet Elena again someday and will never again have to endure the pain of separation from her.

A Kindness in Memory

For Elena's birthday, we asked family and friends to do some act of kindness, small or large, in Elena's memory. We were blessed with many responses (see the Elena's Echoes page to check out the responses people sent to us). A cousin and an aunt decided to partner in an ongoing project (yes, they extended the birthday tribute to honor Elena's memory year-round) to sell preemie hats on my cousin's Etsy store, donating all of the purchase price to the March of Dimes in memory of Elena. The listing allows the purchase of a hat to be shipped to a favorite preemie or to be donated to the NICU at the hospital where my children were born. Additionally, Sophia has personally donated and shipped 25 hats (with another 25 in the works for the near future) to the NICU (and shared a picture of the hats - aren't they sweet?!). She and my Aunt Bonnie made and attached cards to the hats with a link to this blog so that recipients of the hats can read Elena's story (and maybe even decide to pass on an act of kindness in her memory). What a blessing to know that Elena's life continues to touch others - it makes my heart smile.

The Things They Say

Words are powerful tools. They can be nurturing and healing; unfortunately they are often not. Too frequently they are daggers that cut deep. Sometimes innocent words sting, and insensitive comments can be excruciatingly painful. At times it is even the lack of words, the silence, which hurts. I suspect that most, if not all, baby loss families can relate. I have heard many stories of horrific things said to bereaved mothers, and I myself have received more than I care to hear.

I hate that innocent question, “How many children do you have?” and all the variations of it. When I am with my son, I am often asked, “Is he your only one?” How do I answer that impossible question? It cuts my heart to omit Elena, as if I am denying her – how can a mother deny her precious child – but it hurts to tell about her and have the inquirer stumble over some awkward response and then turn and flee as fast as possible, as if my sweet baby is a monster from which to run. I almost feel sorry for the people who ask, when I am brave enough to answer honestly, anyway. Who expects to ask such a simple question only to hear about a dead baby?

The other night I was at dinner with a group of mothers. I found myself only admitting to my living child, not specifically denying Elena (I simply stated that I had a son at home) but not acknowledging her either. Sometimes that’s just easier, as much as it hurts. Then later, I decided to be bold and mention her. I was surprised at the response from two of the women sitting across from me, neither of who appeared horrified that I would mention a dead baby at a light-hearted, social, “moms night out” dinner. I learned that both of these women had also experienced baby loss (all of us under very different circumstances). I was pleasantly surprised when both actually asked questions about my daughter. One of the women asked me her name, and then later in the evening brought Elena up by name. She may never know it, but what a gift she gave me that evening, hearing my daughter’s name “Elena Marie” from the lips of a near stranger, a kindness that many of those close to me do not even give! It was one of the highlights of my entire week. It blesses my heart when someone finds a way to use words so kindly. It is a step forward in the healing process, to be able to talk freely about my child and for others to feel comfortable speaking of her as well. After all, what mother does not like to talk about her child? I have learned that most bereaved parents are like any other parents who are eager to tell about their children. Because our children are often considered taboo topics, I think we are all the more grateful when someone gives us the opportunity to talk about them.

While the “how many kids” question is difficult, I know that it is innocent. I am guilty of asking the question myself, and I now wonder how many parents I have hurt in the process. I don’t blame the people who ask – how would they know? What truly bother me are the insensitive comments. My daughter is not a pet, and I don’t care to hear someone tell me he can relate to my pain because he lost his dog that was like a child to him. Not the same. I did not miscarry my daughter, and I don’t want to hear someone say that she knows how I feel because she had an early miscarriage. Not the same. I’m not sure if people truly comprehend that I gave birth to my daughter. Yes, that’s right, I went through labor and gave birth (and I experienced all that comes with that too, including having my milk come in days after my baby died – talk about adding insult to injury). There was a very real and very alive baby as a result of that labor and birth. Then I watched my baby girl die. I held her as she struggled to breath with her underdeveloped lungs. I cried as I cradled her in my arms, unable to do a thing in the world to help her. I felt her weight in my arms and examined her perfectly formed body. I bathed her and dressed her in a tiny gown and bonnet that were too big for her. While I would not give up the two hours I was blessed with her for anything, it was not an easy two hours. Now I don’t want to come across as my situation is worse, or that I do not care about the grief of others. That is not it at all. The loss of a loved one (or a loved pet) is always difficult. It is heartbreaking. It is just not the same. Not to mention the fact someone else talking about his or her loss brings absolutely no comfort to me. It does not make me feel better that someone else has experienced something hurtful. Bereaved parents with similar stories may be able to understand some of what my family experienced, but loss is not a competition, there is certainly no winner, so let’s just not compare please.

We are all broken in some way, we have all endured some kind of loss, and it is fine to share our experiences and how those experiences shape us. Just don’t presume to know how I feel. You don’t have to know how I feel; it’s okay if you don’t. I’d actually prefer that you didn’t. A simple but sincere, “I’m sorry” is really all you need to say. If you really want to say or do something more, tell me Elena was beautiful, let me know you miss her too, explain to me how she has touched your life, let me know that you think of her too – give me specific examples of when you think of her, call or email me out of the blue just to tell me you are thinking of her, tell me things that remind you of her, ask me questions about her and then allow me to share my memories while you listen, sit beside me and cry with me. Please don’t be afraid to mention her and to “remind” me of her. I promise that I have not forgotten nor will I ever forget. She is always my daughter, and I think of her as often as I think of my son, who is constantly running around my house. I am in a place now where I do not burst into tears every time she is mentioned; in fact, I usually smile when I think of her, and I always feel blessed when others remember her, even if I do cry. If you want to talk about Elena, please feel free to do so anytime!

Please don’t try to comfort me with some cliché phrase. Don’t tell me it was for the best or that something good will come from this. Don’t tell me I’m lucky to have an angel watching over me now. Don't tell me to get over it or to move on. Don’t tell me better that she die now than later when I really had a chance to love her first. These things are hurtful. If you are not comfortable really talking about her, then please just know that often less is more, and again, a short and heartfelt “I’m sorry” is sufficient.

The omission of Elena is painful too. Comments about our son being an only child hurt. He is NOT our only child. He may be the only child living in our home at the moment, but he has a little sister. He talks about his little sister Elena. Remarks that he is going to be a big brother are painful to us and confusing to him. He is not “going to be” a big brother, he already IS a big brother. Comments about us expecting our second child hurt. We are NOT expecting our second child; we are expecting our third. My husband was recently in a situation where the births of new babies over the last couple of years were publicly acknowledged. Elena was left out. My husband was upset about that, understandably so. To make the situation even worse, someone asked him about it and when he responded, the person abruptly dropped the conversation. What is that? Don’t ask the question if you don’t want the answer.

A few days ago I was floored by what may have been the worst thing someone has said to me since Elena died. It wasn’t so much what was said but by whom it was said. An immediate family member, a person who was present at Elena’s memorial service, actually asked me, quite casually with no hint of apology or remorse, and I quote, “What was her name again?” At first I was confused. I thought we were talking about Elena, but this person must have been referring to someone else to be asking her name. Then I realized we actually were still talking about Elena. An immediate family member actually had the audacity to ask me such a question! I hesitated, and then asked, “Elena?” still wondering if I had somehow gotten lost in the conversation. Part of me really regrets not calling the person out on that. I mean REALLY, how do you not know her name, she is an immediate family member, you were at her memorial service, you should know. How could you not know? It borders on unforgivable that you, of all people in this world, do not know. I wish I had pointed out that the person should have known, how could the person possibly have forgotten that? I was so shocked that I didn’t even know how to respond (and I am not typically a confrontational person anyway, I generally try to be the peace keeper, so adding that with the shock and I just didn’t say anything). Part of me wonders if this person truly forgot her name or if this person was just trying to get a reaction from me, to take a jab at me (because I just cannot comprehend the person not knowing her name). I honestly do not know which is worse, taking a malicious stab at a bereaved mother by pretending not to know the baby’s name or ACTUALLY NOT KNOWING the baby’s name. What a slap in the face! This is someone who should love Elena deeply, how could the person not even know her name? I was cut to the core.

If we are not particularly close, I don’t mind you asking my daughter’s name. I am happy to remind you (or tell you for the first time if that’s the case), but if you are family or a close friend and you don’t know, figure out another way to find out that information. Look up her obituary, read my blog, refer to one of the numerous past emails about her, ask another family member or friend, but do NOT ask me (or my husband). Asking the parents when you should know is HIGHLY, HIGHLY offensive. And on that note, if you plan to write her name, please check the spelling if at all possible. Her name has been written on my facebook wall, in the memorial service bulletin, in the obituary, on the blog, on our Christmas card, in numerous emails both around the time of her death and recent too (remember us asking for acts of kindness for her birthday two months ago?). Spelling her name properly is a small kindness that goes a long way, and spelling it incorrectly is hurtful, especially coming from someone close to us. A typo here or there is one thing – simply not bothering to check is quite another. Again, this is more about people who should know better – close family members, close friends. I hope I do not come across as overly harsh, but I am a heartbroken mother, and it makes things so much worse when those close to me add to the pain. I apologize for the rant; I am hurting. I feel that my daughter has been dishonored, and she is not here to defend herself, and I have gone into mama bear mode (which I should have done a few days ago instead of waiting until now).

In an effort to focus on the positive, to search out the good in this world, I want to end by acknowledging the blessings, the words used for comfort, for healing, for compassion. I complain about the hurtful words, but there are so many helpful ones as well. I will always be grateful for those strangers and casual acquaintances who do not run from the conversation when Elena is mentioned, who are gracious, respectful, and kind about her, who are brave enough to ask questions and caring enough to offer a genuine word of gentle comfort, who take the time to read rants on an random blog and leave thoughtful, compassionate comments. I am especially thankful and blessed by those friends and family members who have shown us such love and concern over the last year or so, who listen patiently when I want to share the same memory again and again, who smile when I talk about her, who do kind acts in memory of our baby, who say her name and bring her up first, who ask questions about her, even when they know the answers may be difficult to hear. So many people have loved us and cared for us as we trudge this road, and we appreciate you so much. To those of you who honor our little girl’s life and memory, please know that we are eternally grateful for you and the ways that you remember our daughter. Her memory and our faith are all we are able to cling to as we wait to reunite with her in heaven, and we are so blessed by those of you who help to keep her memory alive in this lifetime. Thank you from the depths of our hearts.