Thursday, October 15, 2015

October 15

My heart is heavy today.  The whole month of October is a challenge for me, a reminder of last moments and saying goodbye.  For the entire month, I am reminded of Reagan as I anticipate her upcoming birthday.  Today, well, today the whole country seems to remember.  Today is National Pregnancy and Infant Loss Awareness Day.  Today, candles are lit and balloons are released in memory of all our babies gone too soon.  It's a beautiful picture as we grieve together, to know we are not alone in this journey.  And ultimately, that's what it is.  A journey.  Not a moment, not an event, but something we continue to still walk through on a daily basis.  Nothing is forgotten, the pain is not erased as time moves forward.  And the struggle of feeling like the rest of the world has moved on while I am stuck here is very real.  I find myself throughout this month having to remind myself of truth over and over: Reagan is loved, she is cared for now, she is not longing for anything, and I will see her again.  And while all of that is true, and it helps to know, it does not change the fact that she is no longer here with me.  And that continues to cut me right to the core.  I miss my first baby girl so so much.  Always.  And most of the time, I feel this need to hide that, to be strong for my boys, to not be swallowed by the emotions of it all.  But today?  Today I get to remember her.  I get to remember Reagan and celebrate her life.  And, more than that, I get to remember her twin, who I never met.  I get to think about him and how he's playing with his sister.  I get to smile as I picture them running hand in hand.  And I get to do all that with thousands of other families who KNOW.  We all get to celebrate our babies together today.

One in Four.  Those statistics are bleak, so let me say it again: 1 in 4.  I know there are so many others who are hurting today, who are longing for their babies.  There are so many who saw those 2 lines and fell in love, only to say goodbye a few days to weeks later.  There are those who saw the heart beating, got their due date, made a plan...only to have that plan change so suddenly.  There are so many we've met along our own journey and through Reagan's Garden who have passed into the "safety zone," halfway there, found out gender, started decorating the nursery, bought all the things, and prepared for baby's arrival...only to deliver into a silent room, to know the face of their child but not the sound of her cry.   And 1 in 4 of us have been one of these.  It's so hard.  And I have no answers, no magic words.  Know that my heart is with you today as we all remember together.

Monday, April 13, 2015

1st quarter updates

I cannot believe we are already approaching April.  This first quarter has been a busy one as things have really taken off.

In February we hosted our first support dinner.  These dinners are a great way to show families that they are not alone, that the community is behind them.  One out of 160 pregnancies end in stillbirth.  At Presby Main, 1-2 each week on average.  That's a lot, a lot of pain and hurt, and yet still a lot of isolation.  We hope as we continue to host these dinners on a quarterly to monthly basis that we can help these families find one another, develop friendships with families who have experienced a similar loss, and give parents a place to talk of their children.  All their children.  We're excited for another dinner in May!

We received a generous donation to be used specifically for the purchase of a Cuddle Cot.  We are so excited to be able to provide Presbyterian Medical with Charlotte's first Cuddle Cot!  Those who have experience infant loss will immediately understand the huge benefit of this equipment, but here's a brief summary.  The Cuddle Cot is a cooling system for a bassinet.  This gives families the gift of time, which is so incredibly precious when you are facing the end.  Instead of only an hour or two, you could have a night, a whole afternoon, a day to spend bonding with your child, memorizing each little feature, waiting for your photographer or family to come in town, etc.  This will be available in Labor and Delivery as well as the NICU.  We are so excited for it to come in and be able to deliver it to the Women's center.

Cards and flower delivery are running smoothly and we have shipped out an additional 5 hope boxes.  We are down to only 3 of the initial 13, so another day of box decorating/stuffing/writing is coming soon!

Thank you for all the donation, support, and help you have offered.  We pray we continue to be able to support this hurting population during their darkest times and rely on your help and God's goodness to do so.  Thank you for all you do!

Friday, December 5, 2014

Hope Boxes

Families who experience infant loss while their child is in the NICU, whether the parents have been discharged or not, receive one of our hand decorated boxes.  These boxes are filled with an assortment of items for both body and soul, including lotion, lip balm, coffee, tea, mug, journal, Bible, and One Year Book of Hope.

At first glance, these items seem a little random.  So I thought I might elaborate on how we arrived at these contents.  After Reagan was born, I was mailed a Hope Box from Hope Mommies which contained many of these same items.  We've added some and changed others, but that was the most helpful and encouraging packages I received.  One of the moments I remember with the most clarity after Reagan was born was sitting in the backyard next to the flower garden we planted for her, sipping my tea, and reading about Heaven.  It brought me so much peace to know where she was and that she was cared for.  We had a passage in Isaiah engraved on her urn, Isaiah 65:17-23.  We were comforted in knowing our Lord had suffered loss and grieved with us.  Without this Hope, we had nothing.  Thus, we have included a Bible.  Nancy Guthrie wrote the One Year Book of Hope after losing not just one but two children to a genetic disease.  She is open and honest in sharing her pain, hurt, and frustrations with each child's death, but also the Hope she has in Christ.  After Reagan was born, I began journaling on paper again (which I hadn't done since maybe middle school??).  There were moments we chose to keep private, letters we wrote to Reagan which were not meant to be read by anyone else.  And the monogrammable journals provided in our boxes and do just that for these families.

The items that seem a little less obvious are those intended to be more for pampering.  Here's the thing, after you lose a child, you don't want to do anything.  You don't care if you eat or drink.  You don't care if you shower.  It becomes very easy to retreat into yourself.  These small items can help.  Lips still get chapped, particularly after a hospital stay (drier air, perhaps?)  Sleeping become difficult, and lavender aromatherapy lotion won't fix that, but it may give a moment of slight relaxation.  Drinking some coffee first thing in the morning to get you out of bed or drinking Sleepytime tea at night to help you rest may be just the thing that is needed.

There is nothing profoundly special about what we put in each box.  They are simply the items we have found most useful, items that brought us the most peace.  Returning to life without your child is incredibly painful and difficult, and if these boxes can help any one family, show them a moment of peace, give them a Hope for the future, then our mission has been accomplished.

Wednesday, December 3, 2014

December updates

I cannot believe it has already been 6 weeks since we launched.  Time flies.  I have been keeping busy with getting everything put together for the hospital but have done poorly at updating here.  So, the last 6 weeks in review:

Our flower delivery is now be running smoothly, with all nurse managers on board and an easier way to streamline the process to prevent overlooking patients or duplicate orders.  Handmade cards with donated Shutterfly paper are ready to go in the gift shop, delivered with each flower order.  We have been told that 1-2 stillbirths occur EACH week, meaning up to 8-9 flowers/cards will be used each month.  I still cannot believe the statistic is that high and yet is so rarely discussed.  This means the annual cost of flower delivery alone is potentially over $3000 at one single hospital.  We hope to expand into CMC in the coming months/year which will more than double that cost.

Twelve hope boxes are decorated, stuffed, and about ready to go.  We have a handful in the NICU already.  These boxes go directly to families who experience an infant loss while their child is in the NICU.  We had to swap out some materials so they could be given to families of all demographics, so these boxes now cost right at $50 each to make.  Families who experienced stillbirth and contact us are welcome to have a box shipped to them at no cost.  At this point, though, these families receive a separate box while hospitalized from a different organization.  Though our boxes do not contain any of the same materials, we had no interest in stepping on toes or trying to push this other organization out of labor and delivery.  The NICU families, however, were not being served.  Now they are, and from this point forward any families experiencing loss should have a beautiful box to take home.

Finally, just last week we received approval from the nurse managers and VP of women's services to have a cuddle cot placed.  This means we just need to raise the funds (just over $4000) and we can order one for Novant Health Presbyterian Medical Center.  It's a daunting task.  But I know how special it would have been to have had something for Reagan, to keep her longer, to keep her near us.  You would do anything for those precious minutes you have with your child.  We pray this will help some families get to spend more time with their loved ones.

Our current needs are: cards.  If you have a talent for decorating or at least have nice handwriting, please contact us at and we can coordinate getting you supplies to make cards.  Again, we will be making enough cards for 2 each week, so 104 every year.  Secondly, giving.  Please prayerfully considering giving to support our cause.  We would love to have some families sign up to give 1 bouquet of flowers each month ($30).  This will ensure we do not reach a point where families cannot receive a gift due to lack of funds.  We also are looking to purchase the Cuddle Cot as soon as possible and need to raise an additional $4000 for that, above and beyond the funds needed for flower delivery, cards, and boxes.  Please visit to make a donation.  And finally, though this is first and foremost, we need your prayers.  We cannot do this on our own.  We are reaching these families during the darkest of times and only God can provide true healing.

Thank you all for your love and support over these 6 weeks!


Friday, October 31, 2014

Reagan's Story: 2nd birthday


Happy birthday my love!  You are turning two today - two!  It sounds so big to me, especially as I look at your younger brothers.  And the time has just passed in a blur.  But, forever in my mind, always easy for me to picture, is your precious little face.  Exactly as you looked 2 years ago.

The day you were born was difficult to say the least, full of uncertainty and pain.  But, oh the joy.  I remember distinctly my heart doing this little flutter when I first laid eyes on you.  I still remember those eyelashes, those peaceful eyes, and of course the pouty lips.  We often think you would have looked so much like Dean.  I can picture your smile, your blonde curly hair bouncing as you run through heaven.  I am so sad I am not there to celebrate with you today, but I know you are having an absolute blast.  I can't wait to see what birthdays are like in heaven - what kind of wonderful gifts you receive, what you get to learn and experience, and how special it must be to get hugs and kisses from your Heavenly Father.  You are one lucky little girl!

Knowing that, knowing how vibrant and full your life is, makes things so much easier for us.  Though I would still chose things differently, I know with confidence your life was meant for eternity.  And that brings me immeasurable peace.  So, the four of us are celebrating your birthday as much as we can down here.  We're visiting the last happy place you went - Blowing Rock.  We absolutely love it and are glad we are not house bound this year.  We have purple balloons (of course) to send up to you.  Mommy made you the most delicious strawberry cupcakes (with super yummy buttercream frosting, from scratch!).  Your brothers even made you cards and did the coloring all by themselves.  They're very special, and we'll put them in your memory box for safe keeping.  We'll watch the videos of you dancing away tonight.  And though it always makes us cry, it reminds us of how happy you were.  It reminds us you have only known love and there was no suffering in your life.

We are so incredibly proud to be your parents, to know how much your life has touched others.  We are so thankful God is using you and your precious time here on earth to change others, to change us most of all.  We love you so very much, Reagan.  So much.  Not a day goes by that we don't miss you, and we can't wait to see you again!

Happy second birthday, Rea Rea!!  Mommy and Daddy love you always!

Thursday, October 30, 2014

Reagan's Story: 1st Birthday

Happy Birthday sweet Reagan!  I cannot believe it has been a year since we welcomed you into this world and laid eyes on you for the first time.  You brought us so much joy in those brief moments!  And when I think back, I remember it like it was yesterday.  The labor pains are all a blur, but I remember how it felt to feel you kick for the first time, to see the joy on Daddy’s face when he felt it too.  I remember what it was like to hold you for the first time, to see your precious face.  And I remember what I felt when we laid you in that basket and said goodbye to you.  And my heart continues to break.  Time does not make this easier.  I don’t think anything ever will.  But today, on your birthday, I want to remember the good times. 

The first time I felt your little flutter kicks we were on the way home from church.  I was having a hard day, not feeling very well, and I think you knew that.  And so you kicked as hard as you could.  I didn’t feel you move again for a little while, but then I started feeling the butterflies more and more often.  And Daddy finally felt them right before a Clemson game. 

You loved your Tigers!  We took you to 2 games and you helped the Tigers win in each of them.  Every time you would get to kicking away at my bladder, the Tigers scored.  Four out of four times!  What a huge fan you were!  We like to think you continue to watch the games from Heaven and cheer them on.  And we are saving your special Clemson onesies for your future younger sisters so they can have something from you.

The day you were born was such a bittersweet day.  Part of me didn’t want to believe it was true, I wanted to keep you inside of me and pray constantly God would bring you back.  I made the doctors do a 3rd ultrasound just to be sure.  And labor took so long, but I knew it was the last I would ever feel of you and I didn’t want it to end.  But then it did, and I delivered you at 11:16 PM after the hardest day of my life.  And you were just perfect.  Absolutely perfect.  You were the most beautiful girl I had ever seen.  You looked just like us!  I am still in shock when I look at my baby pictures just how much you looked like me.  And it makes me smile.  You had the most delicate, little features – eyes, cheekbones, chin – with the biggest pouty lips and longest eyelashes.  So special.  We fell in love with you in an instant, more than before.  Seeing you just locked us in for life.  I will always cherish our time together.

This past year has been so difficult.  We continue to grieve what we are missing with you, though we know we will be together again.  We welcomed your younger brothers into the world on June 29 this year.  They were also little, but look huge compared to you.  When I look at your footprints next to theirs, there is no comparison!  They have such big boy feet!  We are all home now after a long hospital stay.  I know you have been praying for them and looking out for them, such a good big sister.  We love having them home, but sometimes it is a painful reminder of what we didn’t get to do with you.  And when everyone was excited for our family to be together again, we felt the emptiness of you not being here.  Because we still don’t feel like our whole family is together again.  But one day we will be again!

Not a day goes by that we don’t think of you.  And we talk of you often, tell Warren and Dean all about you.  We want them to grow up knowing they have a big sister.  To always know that October 31 is YOUR day.  And I want to celebrate your birthday each year.  To try to think of the positives, to be happy for you and not sad for us.  I want it to be spent planting flowers for you in your garden, visiting the last happy place you went in the mountains, setting loose purple balloons, and watching your video.  We want to celebrate your life and all the joy your brought into ours.  So today, on your very first birthday, that is exactly what we are doing.  We love you so much baby girl!

Happy one year birthday Rea Rea!  Mommy and Daddy love you so much!

Wednesday, October 29, 2014

Reagan's Story: Heaven

Every once in a while I have these moments of peace.  Mostly I alternate between rage (how in the world could God do this to us?) and being numb.  I continue to struggle with the why.  And trying to figure out what lesson God is teaching me through this.  And why could He not have taught me that lesson in another way? A less painful one?  One when my daughter did not have to die?  One in which I was not surrounded by pregnant women constantly?  One that did not cause this suffocating grief?  But He did not chose to do things that way, and yet again I am left trying to surrender the illusion of control.  Because let's be honest, I've never really been in control.  And this proves it.  If I was in control, she would be happy and kicking around in my belly.  I would now be in my 3rd trimester - complaining of being fat, waddling around the office at work, fighting swollen legs and hemorrhoids and heart burn.

I'm getting off topic, happens so quickly now.  Just takes a second to get sucked back into my sorrows, when I started writing this today so I could share my peace.  Okay, let's try this again.  Every once in a while I have these moments of peace.  Today it came after reading more on heaven.  My new favorite pastime (one in which I can find joy while not feeling guilty for not thinking constant of Reagan) is sitting outside in the sunshine with my tea right next to Reagan's garden.  That sort of makes me sound like I've turned into an old woman...  But today, I was reading a book on heaven.  I've struggled to get through this book with all the complicated theology and references.  So today, I skipped ahead.  And read the fun part - about relationships and society and family and everything we will experience.  And it just makes me so happy to catch glimpses of what Reagan might be doing up there.

Today, I found it reassuring that I will know my daughter when I get to heaven.  I have always had this fear that heaven would feel somewhat lonely - I would be worshiping the Lord so I would not really miss anything while there and would be content and filled with joy.  But it just seemed a little empty to me.  And the more I read and study, scripture paints a very different picture.  Relationships will continue in heaven as they did on Earth, just minus sin.  No more bitterness or petty fights, no back talking or lying, no deceit or gossip.  Reagan will never have to deal with that.  And the God given gifts we have on Earth will continue in heaven.  Not just things like "faith" or "prayer" or "hospitality" (though I'm sure those will as well) but musical talents, dancing, acting, etc.  We will return to the way we were originally created before the fall, worshiping God through all actions.  Not just singing hymns or reading the Bible (though, again, I'm sure we will do that)  And so, very soon I will get to see Reagan dancing her heart away in the streets of heaven.  And she will never trip, lose her balance, or be off beat.  She will be perfect at it, just the way God created her.  And when I get to heaven, I will know her.  We will pick up our relationship where we left off.  And we'll dance together.  And then she will dance with her Daddy (who won't even step on her feet!)  And it will be the sweetest reunion.

Not only will we be reunited with Reagan, but we will get the opportunity to know her twin we lost before we even found out gender.  I always thought we had one of each, so until I know differently, it is a boy.  A little boy I like to think of as Samuel.  Who has sandy brown hair, chubby cheeks, and runs through the field of purple flowers holding his sister's hand and laughing. (cause, remember, in heaven they get along.  no fighting!)  We will learn what he enjoys doing, what his talents are, and how God is using him for His glory.  I have 2 children waiting for me.  And their waiting is filled with joy and wonder and awe with the Lord.  No pain on their behalf, just mine.  And mine is temporary.  Until we are reunited again...