Drowning

So this is what it feels like?!?   I’m not sure what “IT” is… depression, drowning, desolation, misery, the “blahs”, etc.…  All I know is I don’t like “IT.”

It’s been six weeks since Kate’s diagnosis and nearly six weeks since Kate was born…six weeks since the longest and shortest 26 hours of my life…six weeks since one of the happiest moments of my life, the birth of my daughter; and the saddest moment to date, her death.

The past six weeks have been busy…busy with plans, busy with family, busy with travel, busy with friends, just busy!  Things have now quieted down a bit and we’re entering the quiet doldrums of the ‘moving on’ stage.   The problem is I feel that in ‘moving on’ I have turned into Alice in Wonderland and fallen down the rabbit hole into a place where nothing is as it should be. 

Every day people either mundanely or meaningfully ask, “How are you?”

I’m NOT okay.  I finally realized this was the case when I could no longer say the affirmative, “I’m okay” without tearing up.  It doesn’t matter if my mom asks me or the check-out person at the grocery store…I just can’t say it anymore...I’m no longer okay.  I’ve been confused for a few days wondering why I’m just now feeling this way?  Why am I now, six weeks later feeling like my fingers are letting go from the cliff one by one and I’m freefalling downward?  Why did it take this long?  I expect that the nearing and passing of Kate’s due date has had much to do with the arrival of this stage of the grief process.  Her due date was Sunday (11/4)…she should be here in my arms…she’s not and she won’t ever be. 

Not only do I feel like I’m falling into a dark, cold hole I feel like I’m turning into a different person…a person who is more negative, irritable, flooded by sadness and sees sad situations everywhere and dwells on them instead of recognizing the sadness and searching for the positive or the silver lining.  Sometimes I look in the mirror and I don’t like the person I see.  This is not the person I was or am used to being.  I knew that this experience/situation would change me in many ways, but I don’t like these changes and I hope they are not permanent.  This is not the person I want to be moving forward. 

I feel like I’m battling and being knocked and beaten down on so many fronts and I’m starting to get angry about it.  I’m angry that my body has been wrecked; I’m angry that this situation is affecting some of my friendships; I’m angry that I no longer walk past the girl section in Target and smile…now I hurry past and try not to cry; I’m angry at the pregnant woman I saw smoking the other day; I’m angry that my sweet pink nursery is empty; I’m angry that the hopes, dreams and visions I had for Kate will never be realized; I’m angry that I’m so vulnerable and fragile right now (that’s a very foreign feeling to me)… I’m angry!

When I step back, I acknowledge that these feelings and changes are all part of the grieving process, and even though I don’t like it I’m probably right were I need to be…in the trenches, drowning in grief.  As the children’s book (Going on a Bear Hunt) says… “We can’t go over it.  We can’t go under it.  Oh no!  We’ve got to go THROUGH it!”  I know that’s the way it is with the grieving process too.  I don’t like it, but I know that I have to work through it in order to find a resolution. 

As dark as I feel and as sad as my situation is I can think of so many ways it could be worse…

• What if I did not have two sweet and adorable kids to help me get up every morning?  That would be worse.
• What if Kate died in utero?  That would be worse.
• What if she died in surgery and I never had the chance to snuggle her, even just once?  That would be worse.
• What if I had no support group to help me through this impossible time?  That would be worse.

I’m trying to hold on to a little of the ‘old me’ and find some slender and tenuous rays of positive light.

What if?... 

What if blessings come through raindrops?

What if healing comes through tears?

What if trials of this life are mercies in disguise?

I heard this song on the radio the other day and stopped the car to listen.

I know I will make it out of the rabbit hole, out of the trenches, out of the darkness.  I know I will eventually be okay.  I also know that there is something/s good and lasting and meaningful that will come from this experience and Kate’s death.  I know she will make difference somehow and that is helping me struggle to keep my head above water.

While I so wish someone could throw me a life raft I know I must keep treading water on my own for now…

Infant Loss Resources

I sincerely hope that none of you ever need the resources, links or materials listed below, but I have come to find out infant loss is much more common than I ever knew or imagined.  Whether it's miscarriage, stillbirth or infant death, you or someone you know may find some of the resources below helpful.

www.Heavensgain.com

Heaven's Gain specializes in providing small baby caskets and burial products for families suffering the loss of a child through miscarriage, stillbirth, or preemie death.

This website has a variety of hard to find products and resources for families suffering an infant loss of all stages.  It was recommended to us by a friend and was very helpful.  The owners of the company are a couple who suffered an infant loss and noticed a significant void of products for infant death an burial. 

We were gonna have a baby, but we had an angel instead.

The hospital sent us home with a dozen books both for me and Matt and for the boys.  Telling Carter about Kate and processing with him was heartbreaking and tremendously hard; however, this book made it so much easier.  We have read it over and over as a family.  I really love that it validates his feelings of sadness, explains that mommy and daddy cry sometimes, but also shows the angel baby on every page symbolizing that he/she is still with the family.  Matt and I plan to purchase numerous copies of this book to donate back to the hospital as well as to our local libraries...it's that good.

This is the first book I have read about infant loss (I have three others waiting in the wings), but I must say so far this one has hit the spot.  It is an easy and quick read, very conversational in nature with tons of interviews from mothers who have experienced some type of loss.  On nearly ever page it reflects and justifies what I am feeling and experiencing.  

*As I read the other books I'll post and comment on them too.

My good friend and neighbor gave me this book and I absolutely LOVE it!  It's a small book and a quick read...just a few minutes, but the comfort and hope that comes with reading it has been such a blessing!

I can smile when I read this book instead of cry!









A Bereaved Parent's Wish List:  http://www.ohiocops.com/grief/wishlist.html

The Grieving Person's Bill of Rights:  http://www.beneficialliving.com/assets/files/BillA.pdf

Blessings

In the midst of a very sad and difficult situation Matt and I have found some comfort and peace in numerous blessings…blessings that Kate has given us and many others.

Reconnecting

--Social media is both a blessing and a curse!  Many of us get sucked in to Facebook and Twitter spending countless hours posting and checking status updates and/or photos (either of our kids or the latte we had that morning).  I was later than most to join the Facebook craze and am still resisting Twitter, much to my husband’s dismay. Over the past two years I have enjoyed reconnecting with childhood and high school friends electronically; however, I have been floored at the expansive web of connection and reconnection Kate has woven for Matt and me over the past six weeks.  I can’t even begin to list all of the friends, family, fraternity brothers, former students, cohorts, colleagues, friends of friends, parents of friends, etc. that have sought us out to share kind and loving words of support and shared grief.  The vast majority of these connections would not have been possible or made without Facebook.  Thank you Mark Zuckerberg!  (In the very same breath the concurrent and continuous stream of normal, everyday, sometimes meaningless posts and status updates is a cruel reminder that my world has stopped while everyone else’s world continues to turn unchanged.  That rant however, is for another day.)

--We not only reconnected with friends electronically, but personally as well!  The weekend of Kate’s service was filled with high highs and low lows.  Among the highs was the time spent with friends, neighbors and family that traveled from near and far to prop us up with love and support.  Our former neighbors flew in from South Carolina and some of our greatest friends drove down from Columbia.  My best friends from high school flew in from Nashville and Phoenix.  Our best friends from college drove down and our cousins from Chicago made the trip south.  (All of my bridesmaids made the trip…man did I feel the love!)  Finally, our great friends, The Juliano Family, came from Orlando and Rev. David granted us the honor of conducting Kate’s service (it was just as special having him perform Kate's memorial service as it was him conducting our wedding ceremony).  While we all hated to be brought together given the circumstances it was so great to be TOGETHER!  We had been trying get some of our friends to visit Naples for seven years…who would have thought it would take a tiny, beautiful baby girl to make it happen.  YEA KATE! J

Realizing

The Tuesday after Matt and I came home from the hospital we were outside visiting with some of our WONDERFUL neighbors when one of my mommy-friends looks at me and said, “I gave my notice at work yesterday.  I just can’t do it anymore!  After everything that happened with Kate I want…I NEED to stay home with my little guy.  Time passes too quickly and life’s too short.”  This sweet friend had been talking about cutting back to part-time or not working for a while, but the right situation/opportunity never seemed to present itself for her to make the switch.  Kate gave her the little push she needed to take a leap and do what she really wanted to do.  YEA KATE! J

Being Together (This is my favorite YEA KATE story!)

As I mentioned earlier, the circumstances for being brought together were difficult, but in my family it is always great to be together!

Very soon after Kate’s death Matt and I were making arrangements for travel and her memorial and quickly realized that for the first time since Carter’s baptism all of our immediate family will be together.  Baptism…we had not had Ben baptized because we wanted both of our families present and didn’t want anyone to feel left out but didn’t want to ask either group to make the long trip north or south.  It’s very true that the first born is either privileged to (or subjected to depending on how you look at it) all of the pomp and circumstance that comes with being “the first” while the second born often gets the scraps and sloppy seconds.  The time just never felt “right” to baptize Ben…until our Florida trip for Kate’s service. 

David & Matt

Matt and I had asked our friend Rev. David Juliano to perform Kate’s service and he loving agreed.  David was also our absolute top choice to baptize Ben…everything was falling into place!   Before our trip we called our parents and floated by them the idea of a small, private, casual beach baptismal ceremony…they loved it!  David was excited and even said he was breaking out his holy water a parishioner brought back from the River Jordan. 

On Thursday my family was at my parents house for dinner.  It was a beautiful Florida evening.  Matt, my brother Rob, and my Uncle Bob were sitting outside talking about the events of the past weeks as well as those of the days to come.  Rob (new father to 6-month-old Austin) piped up and said, “Nikki and I feel much the same as you and Betsy do…we don’t want to have Austin baptized without everyone together.  How would feel…would it be okay if we had Austin baptized with Ben tomorrow evening?!?”  I wasn’t there, but I can picture the smile that spread across Matt’s face…of course it was okay!  It was better than okay!  Nothing could make us happier, until… My Uncle Bob (another second born) raised his hand and said, “Me too?!?”  I had no idea, but my uncle was the product of ‘second-child syndrome’ and was never baptized.  At this point Matt couldn’t stand it and came running in to tell me about the fantastic developments!  I skipped outside with a happy heart and tears in my eyes shouting “YEA KATE!”

*(A bit of an important back story… My brother is Carter’s godfather and while we were meeting with the pastor before Carter’s baptism Rob, second born who had not been baptized, asked the pastor to baptize him along with Carter.  That day was doubly special for our family!)  Here again, we were getting ready for a multi-generational SUPER-special baptism!

The Friday evening before Kate's service, three families and a very few close friends gathered on the beach in khaki shorts, sun dresses and bare feet.  David donned his pastoral robes and poured Holy water over my son’s, nephew’s and uncle’s heads.  We all celebrated with a beach picnic of fried chicken and fruit while the kids played in the water and we watched a beautiful sunset…it was perfect!  YEA KATE!

Knowing and Feeling…Empathy

The most recent blessing Kate has given us is understanding and empathy.  In a former post I wrote, “We’ve received lots of teary-eyed hugs with the comment, “We/I don’t know what to say!”  You know what…that’s okay!  I’m glad people don’t know what to say because that would mean they know what we are feeling from experience and we are so glad that is not the case.  We hope people can share their sympathy and not empathy."

While I hoped it would never ever happen, someone we know and love has/is experiencing a difficult situation that was initially somewhat similar to ours with Kate.  I have shared a tiny bit of empathy.  Our good friends, Neil and Tracie Kennedy, unexpectedly delivered their son, Cooper at 30.5 weeks.  He was blue and not breathing when he was born and in the first days of his life his parents faced many heart wrenching scares.   *(He is doing much better and continues to improve as I write this.) 

In the first hours/days after Cooper was born I spent time sitting with and talking to Tracie offering the love and support of a mother who knows what its like to fear for your newborn baby’s life.  We talked and cried together…each crying about our own child as well as the others.  I don’t know if I was any real help or comfort to Tracie in those early days, but I do know that had I not had my experience with Kate I would not have even known where to begin to comfort my friend.

I posted this comment on her blog:

My dear friend, 


My heart bleeds at the reality that both of our worlds have stopped...together. No two situations or experiences of maternal grief are the same...I cannot imagine your fear and I PRAY you never experience my reality. Still, there is comfort to be found in the fact that our worlds have halted side-by-side for the time being. Thankfully we can reach out from our shattered realities and grasp each other’s hand. I'm here for you...now and always. I know my sweet Kate is cheering Cooper on! :-)

Rev. David Juliano told us that because of this experience we would be different people…he was right.  Maybe Kate was preparing us to help and be better friends to Neil and Tracie.  I hope I can live up to her expectations and make her proud.  THANK YOU KATE! 

Unnatural

I’m still coming to accept that the first time I held my daughter was the last and only time I held her.

THAT’S NOT HOW IT’S SUPPOSED TO BE!

The river of life naturally flows downstream…from our grandparents, to our parents, to us and on through our children.  I think of myself as being part of my parents and my children being part of me not the other way around (i.e. my parents are part of me and I am part of my children).  Don’t get me wrong!...The unbreakable connection and bond between a parent and child is there in both directions and unconditional love is woven so tight it cannot be frayed, but I guess it is the process and product of creating and growing a family that creates this feeling of a downstream current for me. 

Everything about this situation and outcome feels unnatural.  We’re not supposed to have to say goodbye to our child and feel the guttural pain that comes with that parting.  We’re supposed to learn about death and the difficult, sometimes impossible decisions that accompany it from losing grandparents, then parents hopefully after long and fulfilling lives.  I wish my son did not have to experience the extremes of losing a great-grandfather and a baby sister within the span of three months.  It’s unnatural.  Life flows downstream and any unyielding barrier that falls in its path changes the flow and course of the stream forever. 

I realize how fortunate I am to be able to say and feel that losing a child is unnatural and unexpected.  I know now more than ever that there are so many in this world that live with the expectation or knowledge that they will likely lose a child as a result of their medical, living or political conditions.  My hearts bleeds for them and for every woman who has experienced this unthinkable sadness.  I don’t care how expected or unexpected a loss like this might be, the feelings a grieving mother feels must be universal in some light.  While I HATE that my grief is shared by many other “knowing” mothers, it is comforting to know that I am not alone.  I have had friends, doctors, teachers, mothers of neighbors and strangers share with me stories of the infant losses they have experienced.  We always hug and usually cry together.  (Their tears, many years or decades later, are proof that while it gets better and is not always felt…the pain never fully goes away.)  Behind their tears I find comfort and hope in the strength I see…they made it!  They continued walking life’s path in their new shoes…putting one foot in front of the other.  While fundamentally changed they are okay.

On some days my world stops turning and on other days it seems to turn slowly but it has undoubtedly been knocked from is axis and is turning at an uncomfortable and unnatural tilt.  

“I will (I did) Survive”

Well, I did it.  I made it through my daughter’s funeral/memorial service.  I survived the planning…the hustle and bustle…flocks of family and friends…feasts of food and drink and everything else that comes along with a significant lifetime event.  I survived it and even enjoyed many things about our week in Florida.  What I wasn’t sure I was going to survive was watching the husband I love so dearly -- a man full of emotion who is rarely emotional -- sob unabashedly through the entire service.  If that wasn’t hard enough my four-year-old son began stroking Matt’s arm saying, “It’s okay Daddy.  Don’t cry.” This lasted a few minutes until Carter relented and laid his head in Matt’s lap quietly crying and saying, “I miss Baby Kate.  I really wanted a baby sister.”

It’s so hard to see the people I love in pain!

The day of Kate’s service I constructed the Hoover Dam around my tears and emotions.  I knew if I opened the flood gates I wouldn’t be able to control the tears and I didn’t want my sobs or wails to get in the way…I didn’t want to miss a thing that morning!  I wanted to hear and remember every scripture verse, every comforting word of Rev. David Juliano’s message, and every note of every song…  I heard it all and I will remember it all… It was perfect.  The service reflected Kate in every way.

I know it sounds weird but planning Kate’s funeral brought back many memories of planning Matt’s and my wedding.      

• We were married in the same church with the same officiant (Rev. David Juliano who is a very, very good friend of ours)
• All of my brides maids were present (what incredible friends/family they all are!)
• Designing and printing the memorial bulletin felt much like designing and making our wedding programs
•  Trying to find the perfect dress (if there is a perfect dress when you’re two weeks postpartum)…the only difference is this dress is black not white!  The white dress a bride searches high and low for is one that will guarantee she is the radiant center of attention while the black dress a grieving mother hopes to find is one which gives her enough confidence about her appearance to give her confidence and belief that she can make it through one of the most difficult days of her life.
• Nerves to the core – Wedding: How am I going to hold it together and not cry as I walk down the aisle or during my vows?  Funeral: How am I going to hold it together enough to not drown out the minister with my sobs?

It feels so strange and unnatural comparing one of the happiest days of my life with one of the saddest and most difficult; however, I can’t help but recall something my father said to me around the time of my wedding.  One day I was stressed and upset about the amount of money my parents were spending on our wedding (in hindsight and comparison it was a fairly modest amount but I was still bothered by it).  My dad sat down next to me and said, “Honey, there are typically only two days in your life when the vast majority of people who love and care about you the most are in one place to celebrate you…one day is your wedding…the other is your funeral and you can’t enjoy your own funeral!”  My dad kissed my forehead and told me that this money was the best money he had ever spent!  Maybe that’s why I felt so many similarities between the two events.  There were so many of the same people present at Kate’s service as there were at our wedding and many other people who care about our family a great deal.  In many ways Kate has given me the gift of a glimpse of what it might be like to be present at and enjoy my own funeral!  I had the wonderful opportunity of seeing and visiting with so many people I otherwise might not have seen for quite some time.  Thank you Kate…you continue to give lasting gifts to those who love you.

After a week in Florida with many highs and many lows we have returned to Iowa to begin (or really continue) the long path toward healing.  As we begin to walk this path I am becoming aware of how much I have been changed by this experience…that I am now wearing a new pair of shoes.  Today my dad sent the following email and poem… *(I so don't know what I/we would do without the support of our incredible families! Hope it's okay that I shared your email Daddy...I really loved it and love you!)

Carlin Elizabeth,

An awesome experience to watch a daughter tested in the fire.  It is hard but it is good; for the daughter, and for the father.

By this process you are annealed.  Stronger from within.  Able to take the strain.

Somehow now you are larger than life, yet closer than a whisper.

You touch me like the wind.

Papa

"A Pair of Shoes"

I am wearing a pair of shoes.

They are ugly shoes.

Uncomfortable shoes.

I hate my shoes.

Each day I wear them, and each day I wish I had another pair.

Some days my shoes hurt so bad that I do not think I can take another step.

Yet, I continue to wear them.

I get funny looks wearing these shoes. They are looks of sympathy.

I can tell in others eyes that they are glad they are my shoes and not theirs.

They never talk about my shoes.

To learn how awful my shoes are might make them uncomfortable.

To truly understand these shoes you must walk in them.

But, once you put them on, you can never take them off.

I now realize that I am not the only one who wears these shoes.

There are many pairs in this world.

Some women are like me and ache daily as they try and walk in them.

Some have learned how to walk in them so they don’t hurt quite as much.

Some have worn the shoes so long that days will go by before they think

about how much they hurt.

No woman deserves to wear these shoes.

Yet, because of these shoes I am a stronger woman.

These shoes have given me the strength to face anything.

They have made me who I am.

I will forever walk in the shoes of a woman who has lost a child.

~Author Unknown

We have been surrounded and enveloped in the loving embrace of family, friends and even strangers who have come together to support our family through this difficult and trying time.  I am so thankful for and grateful to you all. 

Taking my first steps in my new shoes… learning to walk all over again.  I will survive!