Thank You For Everything

Today is Nurses Day, and my goodness do I have a multitude of reasons for my appreciation of them.  I'm not even sure I'll be able to adequately express that gratitude in a measly blog post, but I'll give it a shot.

Firstly, and the most obvious:  our journey these past two years has been one hundred percent affected, changed, enhanced, saved and supported by a small army of very talented, very compassionate nurses.  Here's one thing I've learned about them:  they often know everything.  Even when doctors don't sometimes.  They will inform, they will educate and they will advocate for you as their patient.  They will tell you like it is, they will give you the benefit of the doubt, they will catch things that others would never see, they will hold your hand when you are terrified, they will cry with you and for you.  This is the hardest job in the world.  That's definitely not to say they are "better" per se than good 'ol doc, but seriously, they are a force to be reckoned with.  For us, it was a nurse that spoke up about things that may not have been right during Lillian's birth; it was (two) nurses of Lillian's that came to her funeral.  For us, it was a nurse that looked me in my eyes when I was miscarrying our second child and held my hand and told me "I'm going to make sure you're taken care of, I'm not leaving your side", and she didn't. Ever.

That last nurse in the above played an integral part in Declan's arrival this past Tuesday morning.  The day that I came back to the hospital after my miscarriage last year, (for my neonatal stress tests), she saw me walk toward the nurses station on the labor & delivery floor, and she said "Leslie!"  (Seriously?  She remembered me?)  She continued "I have been thinking about you so much; and here you are!  You're pregnant!!"  I smiled and said "I am!"  She said "I read your entire blog and was hoping that we'd meet again, just like this."  Well, that made me cry.  Then she led me to an exam room for my first of many NST's.  This nurse's name is Ellen.  That day, she made sure she would be scheduled for the delivery of Declan, and told me as much.  What comforted me was that she didn't know me as a patient, she knew my backstory, she understood it, and she knew me as person and she treated me that way.

Often when we are in a medical setting, as "civilians" we can become overwhelmed and scared and we can shut down and become difficult to deal with for our medical team(s).  This is a huge wall that nurses scale every single day in various ways that I don't think us civilians will ever fully understand. What we can do is try to remember that when we are faced with a medical problem and are seeking help from a medical professional, in this case our all powerful and knowing nurses, the least we can do is try to be a good partner with them in the care of our own personal health.  That's really the thing, we are partners with our nurses; so...be very very nice to them, they will make all the difference in the world to your well being.

It was very hard for me to trust anyone after the experience we had with Lillian's birth; but Ellen...she scaled my walls and thank god she did because she made our experience for Declan one of the most wonderful experiences we've ever had.  There are just some nurses that are talented enough to just melt down that reserve and to eradicate any walls you have up because they're just that good.  Ellen is one of those nurses.  Ellen helped to bring our rainbow baby into this world and I will be forever grateful for her.  She wasn't even assigned to me for some of the days we were in the hospital but she still checked on me; she got to know Jason better and my mom and she walked/wheeled us down on our day of release.  She is amazing and I will always make sure that Declan knows exactly who she is to him; and how important her presence was in bringing him into the world.

Thank you Ellen, you and your fellow nurses at St. Joseph Labor & Delivery are an incredible group of people.  Thank you for helping us to bring our Rainbow Baby Declan into the world.  Hopefully, we will always make sure to stay in touch with you; we want him to know that we had some outstanding help getting him to us.

Second, not only do I come from a family that has many medical professionals in it, but I have an incredible amount of people in the periphery of my life that are nurses.  I frequently hear their tales of their careers; I see their late night posts; I know what holidays I will and will not see some of them because they are working.  I see their plight from a very up close perspective, and sometimes I just can't believe they do what they do.  Not sometimes, all of the time. I thank every single one of them today.  I want them to know that we see you, we know what you go through to keep us healthy and to we know how much time you give up being with your families, so that we can be with ours.

There are no words to fully and truly thank you for what you do every day, but from the bottom of my heart, my husband's heart and my son's heart, thank you...for everything.

This is a shot of Declan and Ellen while we were still in the hospital:

The Day Has Come!

I know it’s been forever since I’ve posted. There’s a reason for that. I’ve wanted to keep these last handful of months to myself and my very close friends and family. It’s been a crazy, wonderful, scary time but we have an unbelievable ending to a really worthwhile journey.

I made a video for the very special occasion. Thank you for watching and as always thank you for reading.

Jealousy Of The Bliss

I have been avoiding writing about this topic but I have to now.  There's this shitty piece of grieving your lost child that I absolutely cannot stand (well all of it obviously), but: the overwhelming feelings of jealousy toward the following people:

• Those that have living babies that you can't help but do math in your head about (obsessively) to figure out how close they are in age to your lost child.
• Those that are able to quickly get pregnant seemingly because they just had the thought to do so.
• Pregnant women who have zero connection to loss (and thank god), and are blissfully unaware and get to experience their pregnancy in a state that I can never be part of ever again, which was one of my most favorite parts of being pregnant.  I also recognize now, how annoying I must have been to those that had already gone through a loss.

Whew.  I feel better just typing all those out.

The hardest one for me is that third bullet, and man it's a bullet.  I envy the women that have that wistful, blissful, dreamy and perpetual half smirk on their faces because they are that lost and into their pregnancy.  I don't blame them at all because it's the freaking coolest thing that's ever happened to me personally, so I get it.  Seriously.  I loved it.  I loved my tummy, I loved rubbing it I loved talking about it, I'm positive I was super annoying to those that had already experienced heartbreak and loss.

Now, all that goes through my mind are all of the terrible things that could possibly happen; and not just in the beginning, tenuous stages of pregnancy, I mean the entire freaking 10 months of it.  There's a huge part of me that wishes that I had never gone to that group therapy after losing Lillian because it was there that I truly saw the struggles of women at all stages of pregnancy, and pre-pregnancy.  You guys, I'm here to tell you, it's not pretty.  It's gut-wrenching.  At the time, those were my people.  At the time, I needed to see others that had gone through full-term losses like I had and had come out the other side, but now that I have some distance, all I see are all the possibilities of heartbreak.

I feel so robbed.  I'm not just robbed of getting to raise my daughter, I'm robbed of that blissful, unaware, happiness.

I don't see pregnant women anymore and get a warm-fuzzy, I see them and I say a little prayer, "God, please don't let them count their chickens before they hatch".  That makes me feel like a terrible person.  Who am I to begrudge another women's happy pregnancy?  I just am so pissed off that I have the knowledge that I do now and I wish I could just go back to being blissfully unaware.

Know this pregnant people: those of us that have experienced heartbreak and loss are super envious of you.  You remind us of what we don't have.  We love you still, very very much, but sometimes you make us want to cry and kick and punch a wall.  It is very hard to see you so pregnant and so ecstatic and so alive because we want that again; we want those feel good emotions to flow through us and to flow through to our families and to experience that collective bliss that you get when you are pregnant.  Those unmatched levels of love that seep out of you and to those around you is such a gift because when a woman is pregnant, her feel good hormones and all that love is felt amongst everyone that she is near.  We want that too.  Desperately.  It is a portion of life experience that is one of a kind.  So while we definitely are happy for you, we are jealous all the same because there is no other more beautiful feeling that the one that you get when you are actively creating a life.

So...there you have it.  I've been struggling a lot lately with feelings of jealousy of the bliss.  It's weird, it's almost like when I listen to newly pregnant ladies talk about their experience, I look into their eyes and I can see where they are and it really is truly beautiful.  I think what's happening is that I'm mourning ever being able to be there again.  Regardless if I get pregnant again; that unaffected, pure happiness is gone because of what I know now.

I think I have to allow myself some time to grieve that part too.

For Tomorrow 7/30 - Lily's Would-Have-Been First Birthday

After our visit to All Saints in Des Plaines, we will head to Montrose Harbor. I completely realize that just saying "Montrose Harbor" is kinda like saying "come hang out with us in the city"...Here's a geotag of approximately where we will be, at the Harbor.  Note:  As you travel East on Montrose, go all the way INTO the harbor, driving past Lake Shore Drive, keep driving until you see Montrose open up; where 1 way you'd hit the beach (left), the other way (right), you'd begin going down the actual boat harbor.  Go all the way around until you can see that lighthouse and the downtown skyline jutting out onto the water.  Here's the geotag below and a view of (sort of) what's in front of where we'll be.  Look for a canopy...and a gathering of peeps.  There's PLENTY of parking all over the harbor and actual public bathrooms right across from where we'll be:

(see below for what the view is from where we'll be.  excuse the horrible blur, my phone camera stopped focusing on far distances...but you get the idea)...

An Invitation

I've been overflowing with sneaky anxiety since this month began. Panic attacks in traffic, dry heaves for no reason and waking up with a racing heart for what I'm guessing are nightmares but vanish the moment I open my eyes.  I stood in line at the grocery store on Thursday night, reading an article about grief and loss, and sobbed onto phone screen.

Everything affects me right now.  I'm super touchy, I'm taking everything personally, I'm worried about every...little...thing.  I run to my car at the end of my work day because I can't hold it all in anymore and I just want to be in my car so I can cry without making everyone around me uncomfortable.

We are 1 week away from Lillian Angeline's one year birthday/anniversary of her death.  I am holding on by a thread.

There is at once so so very much I want to say and yet I can't organize my racing thoughts enough to make any sort of sense about any of it.  I've attempted six times today to sit down and write a blog post, and I just couldn't get through it.

Instead, I will extend an invitation...a couple of them:

Next Sunday, on our daughter Lillian's first birthday we will be celebrating her and remembering her. I invite anyone reading this post to partake in any of the following, and I do mean anyone. Maybe you read this blog but you've never met me, maybe you're part of the group therapy I was part of for the better part of the last year, maybe we're very close friends and you've been with me and Jason each step of the most horrible year of our lives, maybe you're an acquaintance that knew what we've gone through and have followed along as we've tried to make it through; maybe we know each other and you've not said a word because you have no idea what to say, (it's okay btw, there's nothing perfect to say), maybe we used to be close friends, but we haven't seen each other, but you've followed along on social media...however we know each other...I invite you to any and all of the following:

On Sunday, July 30th, at 12:00 pm we will be visiting Lillian Angeline's gravesite at All Saints Cemetery in Des Plaines, IL. Lillian is buried in the baby section, very close to the cemetery road.  If we are still there, look for Jason's orange car.  We will likely stay for about an hour.  That's typically as long as I can handle being there.

When we leave the cemetery we will head to Montrose Harbor, the actual harbor part, not the beach, drive through the harbor drive until you see a huge bunch of pink and purple balloons.  We will be there, hopefully with some friends and definitely some family members.  Share in us remembering our beautiful daughter Lillian.  We invite you to write a message in her honor, write words of love or peace or wisdom, write something that you need to release; write whatever's on your heart, then tie the message to a balloon.  We will release all the balloons together before sunset.  If I can get it together enough, we'll have refreshments and some food, bbq/picnic-style.  Bring anything you'd like.

If you can't see us in person, please purchase a bouquet of lilies and place them in the most beautiful, sun-drenched area of your home and take a picture of them and tag me and tag Jason on social media, in memory of Lillian Angeline.

Thank you.  Hopefully, we'll see you next Sunday.

***UPDATE 7/25:  Because I wasn't thinking clearly when deciding what to do to commemorate my daughter's life; I didn't think about the fact that balloons are the often the culprit of ending the lives of innocent animals. SO...because Sunday July 30th is a day I'd like to not add to the ending of lives but rather celebrate the life of our Lillian, we will not be releasing balloons, but will rather be utilizing "Flying Wish Paper", where you can write your thought or message, and then you light it, and it flies up into the ether and it burns away in the air.  Also feel free to bring lillies and to scatter the petals in the water nearby along with a loving thought or wish. Still at the harbor, still after the cemetery.

Also:  All children are absolutely, 100% welcome at our memorial celebration of Lillian Angeline, do NOT feel like your children make us sad.  That couldn't be farther from the truth; your children bring us joy, and would have all been friends with Lily; so please know they're included in this invite.

I don't need a headcount, I don't want rsvp's. Make it if you can, if not, it's really okay. This is mostly for myself and Jason, but we're including our whole nucleus of people because we love you.

Okay...that should do it.

Time Changes Everything And Nothing

We are approaching the 1-year mark.  How the heck did that go by so quickly?  The closer we get to it, the more anxious I get.  I worry not about the sadness and grief that will wash over me (that's a daily thing), but I worry about the passing of time.  I get seriously sad about every single day that passes since we lost her.  The further we get from that day, her birthday to me, but the day she died to me as well, I am sick with sadness that I don't have her with me and as time moves forward, I am further away from the day that I held her in my arms.  I hate that.

I rely on "4 hours and 29 minutes".  The length of Lillian's life.  You know who I'm jealous of?  The mommy that got her baby for 4 hours and 30 minutes and in order, then I'm jealous of the mommy that got her baby for 4 hours and 31 minutes...all the way to the mommies that just simply get their babies.

These last months have been a blurry mix of sadness, bittersweet happiness, deep love and nostalgia along with panic, pain and heartbreak, loneliness and a longing that I cannot describe.  I still have that physical hunger for my daughter.  I don't think that's something that will ever go away, not when yours was the body that grew hers.  It's a terrible feeling; and one that you can never ever understand unless this has happened to you.  It's very hard to describe.

Each day that ticks by, and I lift my head up again, and I move about my days again, I notice things that I didn't notice before.  I look at little kids and I know exactly how old they are by looking at them.  I always notice the ones that are Lillian's age...(or rather what would be Lillian's age).  I see her in their faces.  If their moms or dads are holding their arms up and above their heads, as they lead them in taking those adorable, shaky first steps, or are wiping their messy faces while they take tiny bites of things, I think of her.  I try to imagine what her face would look like now.  What color her hair would be.  I long for the deep exhaustion that comes with a new baby.  That over this any day. Then, I think of her eyes.  Would they look exactly like mine?  Like Jason's? Or would they be a blue all her own, that would be a perfect mix of both of ours?  Uniquely Lily's?

Everything just looks and feels and is different.  Including me.  I have various people in various areas of my life that probably don't realize just how different everything is for me, for us. Most do of course, but there are definitely some that don't get it.   Just because we both get out of bed every day, and we go to work every day and we fake it through things like meetings, and gatherings (when we actually say yes to attending something), and Mother's Day and Father's Day (this weekend), doesn't mean we're "all better".

Every single thing shifted the day we lost Lillian.  There are priorities, actual and emotional, that have shifted for me.  I no longer have space in my mind or in my heart to inherit other people's grudges or traumas or dramas.  I don't care about anything else other than my husband and our family and close friends. There is no more room for anything else.  The loss of Lillian is way too big and takes up way too much emotional space for me to care about anything else.  I think in my younger days I would make other people's battles my own, I'd made that my way of being a good friend to people, "stand with your friends and help them fight their battles" was a thing I lived by.  I just don't have that in me anymore.  The people that think that I do, are simply remembering a version of me from the past.  Like I said, everything is different.

There's nothing like a major loss like this one to force you to reorganize your priorities.

There's both an unpenetrable aspect of what has become of me, and a fragility that has emerged.  At once, I feel untouchable - "go ahead, give it your best shot, nothing's going to get to me", because, after this, there isn't anything that can get under my skin anymore; yet there's a vulnerability that lives just under my surface that brings me to my knees regularly.  It's a terribly conflicting feeling.

This weekend would have been Jason's first Father's Day with his daughter.  Instead, this weekend has become just his first Father's Day as a father.  Big difference.

Though it's probably not front of mind for Jason right now as I type this, I suspect it will sneak up on him on Sunday; and I'll be there to help him fight that battle because he is my priority.  We will still celebrate Father's Day on Sunday because he is still a daddy, even though the person that made him one hasn't been in his arms for 11 months, that doesn't change a thing for him.

Old Haunts and New Perspectives & Bryan With A Y

I live very very close to a Starbucks that has a drive-thru.  When I was pregnant with Lillian, I would go through the drive-thru every morning and grab a "Venti, unsweetened, iced green tea", and in the winter it was a hot tea.  Almost every time I would go through I got the exact same guy.  His name is Bryan.  "Bryan with a Y" is what I'd say in my head every time I'd see him, and I'd wonder if we'd ever be comfortable enough with each other for me to drive up and say "Good morning Bryan with a Y".  If I had to guess, I'd say he was about 32-35 years old, (around my husband's age).  He's got a very sweet, caring disposition, and we've chatted before about his two kids and his wife, a conversation that came about once my belly really began to pop out, and I would make funny references to it, "She likes her green tea", "won't be long now", and "soon my order will change to a triple shot vanilla latte since sleeping is soon to be non-existant".  He'd laugh, say he and his wife had just gone through that same rough patch with their youngest, and I specifically remember him, that day say to me "it's so worth it though." He'd always ask me what I was listening to on my way to work.  Together we jammed out to Little Red Corvette, I Would Die 4 U and Let's Go Crazy, the week that Prince died, and together we paid homage and it was really fun to watch him and his coworkers, dancing and lip-synching in the drive-thru window each morning that week.  One morning of that week, I randomly said to him "I have the same birthday as Prince.  June 7", and he said "when is her birthday supposed to be", (referring to my belly), I said "July 27th is the projection, but I have a feeling it won't be until we're well into August.  He raised his eyebrows, "August is a great month for birthdays, Aug. 16th!"  We high fived that morning.

I love my Starbucks.  I love the relationship I've built with Bryan With A Y, and when he's not working, there's Sarah and Mia, both in school at Columbia College (one of my Alma Maters).  After we lost our Lily, I had this very deep and very pronounced fear of going to public places and businesses that knew I was pregnant, and the last time they saw me, I had this big, jolly baby belly, and likely an even jollier disposition because I was probably the happiest pregnant lady you'd ever meet.  I was scared of "How is the baby?"  I was scared of the face everyone makes that finds out for the first time.  I was scared of the weird switch that happens, when the mother of the loss has to then comfort the one she's informing that her baby has died.  All of a sudden, you're hugging them to console them because they feel terrible they said anything, (but how would they know?), and then alternately they're looking at you with the most sorrowful eyes and expressions.  It's a very very hard thing to navigate, and it took me going to various places with my husband there to support me, and either going through that interaction together or finding out that nobody would say a thing to us about "the baby", and not necessarily because they suspected something was wrong, but because they just didn't think to ask.  I was so so grateful when that would happen.

I did not want that type of interaction with Bryan With A Y. I even thought that maybe he didn't work there anymore and the drive-thru window person would be a stranger.  That'd be better than having to see Bryan With A Y's expression when I told him that Lillian didn't make it.

I went to Starbucks this week.  I had not been back to my Starbucks in the morning in almost 10 months.

Bryan With A Y was totally there.

I drove up, he smiled and said "you know, I could never forget the lady with the green car who gets the green tea."  I honestly almost started crying happy tears.  I could have jumped out right then and there and hugged him.  He didn't ask me how the baby was, he didn't say "where have you been" and he didn't do or say any of the things I was scared he'd say.  There were no pitiful expressions, shocked eyes, apologies for our loss.  He was just my same ol' Bryan With A Y, and I was just the lady with the green car who loves green tea.

I realized that after a trauma such as this, that the parents worry so much about "what ifs", and create scenarios that are absolutely horrible in their minds about what might happen.  The reason we do this, the reason this just happens to parents of loss, is because the most horrible thing did happen, so how could all of the most horrible things also not happen?  Well sometimes they don't. Sometimes, our worries are much greater than what actually ends up happening.  To me, that realization is progress in healing.  I am not at all close to being "over" Lillian's loss, I know I will never be, but today I'm not as afraid as I used to be right after she passed away.  Don't get me wrong, I still ache for her, I still dream about her, I still remember what the top of her head smelled like, I'm still pissed as hell; but there ARE things that I can do now that I couldn't do before and sometimes, those things are as simple as going through the drive-thru at Starbucks.