A picture of Jillian

Only a few people have seen this picture. I have been very hesitant to let anyone see it, and not just on the internet. Almost six months after she was born, I’m finally ready to share it with the world (I think). I’m still pretty apprehensive to post it, but at the same time, I want everyone to see how beautiful and perfect she was.

Only one stranger has seen this photo. It was a little girl sitting next to me on a plane last month. It’s the background on my computer, and when I turned it on, she asked if the baby was mine, and then asked if she was a boy or girl. Her questioning terrified me, because I was so afraid she would ask what the tubes were for, or why she was so tiny, or why she wasn’t with me. She was an unaccompanied minor, so there was no parent there to guide me with my answers. How would explain to total stranger, a young child, why my daughter is no longer with me? When I told her that Jillian was a girl, she just said, “she’s pretty” and went back to whatever she was doing as I sat there trying not to start bawling. It’s one of those moments that I’ll remember for the rest of my life. That little girl gave me the courage to share this picture here.

Exhale

We made it through yesterday. It actually ended up being a very nice day for us. We didn’t really do anything all day other than spend the day together. It helped to know how many people were thinking of our family. Actually, that’s probably what got us through the day. Thank you, anyone who is reading this, for that.

In other news, I had the ultrasound on my uterus this morning. I felt sick to my stomach on our way there. Sitting in that waiting room wasn’t much fun. The anticipation in so many couples’ eyes was clear. We were like that not too long ago, and I miss that hopefulness.

When we went into our room, I recognized the technician from one of our ultrasounds with Jilly. I’m certain that she didn’t remember us, but I wouldn’t expect her to, especially because everything was so normal and routine at those ultrasounds.  She asked if I’d had a test or anything that showed there may be an abnormality. I felt like it took me an eternity to answer, and eventually I was able to tell her that our daughter was born at 24 weeks. I held back my tears until she left while I got undressed. I cried because I hadn’t prepared myself for having to answer any of those questions and I missed Jillian so much. I missed her so much at that moment that I forgot about being nervous about the ultrasound. It didn’t matter if we got good news or bad news – I just wanted Jillian.

Here’s the good news: according to the doctor, my uterus looks great. There’s no dip, no septum, and everything looks really good. I burst into tears as soon as he said it, so he was probably wondering what was up with the crazy woman who cried upon hearing something good, but that’s fine.  There is no bad news.

So I guess now we just wait. I’ve been fantasizing about the perinatologist calling and saying, “it looks good, so go ahead and start trying whenever you’re ready,” but I’m 99.98% sure that’s not going to happen.

As for now, I think I’m going to resume working on the sweater I had started knitting for Jillian to wear home from the hospital. I haven’t been able to even look at the yarn since we came home from the hospital without her. I’m hoping that someday, I will be able to show it to another daughter and tell her the story about how she got to wear her big sister’s sweater home from the hospital. After this morning’s results, I’m more comfortable with letting myself believe that this could actually happen.

March 24, 2010

So, here it is.  Jillian’s due date.  It’s a day that we once looked forward to more than any other day of our lives.  We knew that we would either be at home with a brand new baby girl, marveling at the amazing life we created, or in the process of wearing a ditch into our block’s sidewalk by walking back and forth, trying to get labor to start.  In an instant, on December 9, it became a day that will forever fill my soul with dread.  It is now a day that means more to me than any holiday or birthday, only overshadowed by Jillian’s birthday and the day of her death.  I know that for the rest of our lives, March 24 will remind us of the lives that are gone forever: not just Jillian’s, but also our own lives that existed until the moment our precious daughter slipped way.

I remember a few times during our hospital stay when we weren’t sure that Jillian would make it.  These moments were caused by her initial brain bleed, being told she would likely need heart surgery (that issue ended up fixing itself pretty quickly and filled us with so much optimism), and waiting for the meeting with the neurosurgeon that the doctors had requested, which we knew could not be a good thing.  I remember crying to Dave that we could not lose her.  I was positive that I would not survive.  While it was a very real possibility that she wouldn’t survive, I couldn’t fathom it.  I did not understand how I could possibly go on without her.  It didn’t make sense.  That wasn’t something that could happen to us.  That kind of thing happens to other people, and I wouldn’t be able to handle it.

Amazingly, as terrified as I was of a life without her, at that time, I totally underestimated how devastating it would actually be.  The pain that comes from losing a child is completely unimaginable until it actually happens.  It is a physical pain unlike any other.  Somehow, though, I have survived.  I know our promises to Jillian are a big reason I’ve been able to go on with my life, but it’s also because of Dave.  I’ve been so independent for as long as I can remember, but now I don’t know how I’d live without him.  When we got married, we promised to be there during the bad times, but neither of us realized how bad it could be.  We have a bond formed by something that most people are fortunate enough to avoid during their lives, and it has made us realize how strong we are together.

In addition to today being Jillian’s due date, we’ve also been thinking about the fact that if she had survived, we would hopefully be preparing to bring her home around this time.  We were told during one of our first meetings with the neonatalogists that we could expect Jillian to be in the NICU until around her due date.  Having her in the hospital for at least three and a half months felt like an eternity.  I look back on our four days in the hospital and remember how terrified we were of the idea of leaving her there, knowing that being ten minutes away instead of a floor away would mean an even worse inability to fall asleep at night, jumping ten feet in the air every time the phone rang, feeling an ache in our hearts every time we left her bedside to go home for a shower, meal or work, and waking up before dawn to call for status check, relieved that the phone had not rung in the middle of the night.  At the time, it seemed like the scariest thing in the world, but I’d obviously take it over our reality.

I felt a strong need to look at Jillian’s face the other night, so we looked at our pictures from Now I Lay Me Down to Sleep.  They’ve been very difficult to view because of the pain in our faces, so we hadn’t looked at them in months.   I realized as I stared at them that it was the first time I’d really looked at them, and they overwhelmed me.  I know parents tend to be biased about their children, but my goodness, she was beautiful.  Seeing these pictures – really looking at them – makes my heart overflow with so much love.  As much as I think about Jillian every day, I hadn’t felt that feeling since I handed her to the doctor after she died.  I am so happy that I decided to ignore my fear of these pictures and look at them.  It made me realize that my connection with Jillian will never go away and I am so lucky that I get to experience that.

I know that we’ll get through today, but it’s not going to be easy.   We are trying so hard to be optimistic and focus on the future, but that’s not easy either.  We have so much to be thankful for, but it’s not enough.  We’d give up everything to have our sweet Jillian back.  I’d give it all up for just another moment with her.  I’d do anything for the chance to hold her, to kiss her perfect little nose, and to feel her heartbeat against mine again.  I know none of this can happen, but it’s so nice to think about how wonderful that would be.

One of my internet friends, who sadly lost one of her daughters last year, recently added this to her signature:  “Some people only dream of angels… I held one in my arms.”  I smile every time I read it because I held one, too.  Before Jillian, I didn’t really believe in angels.  Now I do believe in them, and I have one of my very own.

Daddy and I love you so much, Jilly bear.  We love you so much that I can’t even put it into words.  You are our sweet, beautiful, amazing little girl, and we miss you more than ever.  One of the books we read to you has a line that reads “I love you to the moon and back.”  While that line will always remind me of you, it doesn’t suffice.  The universe isn’t big enough to measure how much I love you.

Peace

I think I’m getting closer to the point where I’m making peace with what happened to our family. It has been very gradual and it’s not like I’m over it (I will never be over it; I’m just learning to live with it). I still have moments of incredible anger and sadness, and I’m still prone to bursting into tears in the middle of the gym or grocery store, but these days, my thoughts about Jillian usually make me smile. I don’t dread going to appointments or even just out in public because of my fear that someone will ask how my baby is or whether or not I have kids. I know that those questions will probably always make me sad, but they’re not as overwhelming as they used to be.

I think I came to the realization that I’m making peace with Jillian’s premature birth and premature death when we passed a very pregnant woman on a walk this past weekend. My first thought when I saw her belly was jealousy at her ability to be that pregnant, but then I realized I’m actually the lucky one. I’m Jillian’s mom, and I wouldn’t trade that for anything.

Just a few updates

1. Jillian’s due date is one month from today. I’m having a very difficult time with this. My heart is aching about the fact that I’m supposed to be 36 weeks pregnant today. I have tried very hard not to think each Wednesday about how far along I’m supposed to be, but as her due date gets closer, it’s impossible not to think about it. I keep trying to remind myself that just because she was due March 24 doesn’t mean that she would have been born that day, but it doesn’t help. The instant I saw the line on that pregnancy test, I knew that March 24 would never be just a regular day for me again (I chart, so I knew before I even took the test what my due date would be if it happened to be positive). I thought it would be a day that bring happy thoughts about my first child. Instead, it’s a reminder of the heartache and pain I feel because my first child was born too far before her due date and is now gone forever.

2. My high risk consultation is on Friday. I’m so anxious about it that I could cry (and have already cried). I’m looking forward to it because it’s a step forward, but I’m terrified that we won’t hear what we want to hear (which just means we will look for another doctor, but the thought of having to find someone else totally overwhelms me).

3. I’m about 95% sure we’re naming the dog Baxter. Things are going pretty well, but I have a whole new understanding of separation anxiety (his, not mine).

4. If you’ve given me a blog award, I’m sorry I’m such a slacker and haven’t posted about it. My goal this week is to make a post with all of them. That’s my one goal for this week. That’s how high I’ve been setting my bar lately. Go ahead, roll your eyes at me. I just did.

Mail and Daydreams

We get mail for Jillian pretty regularly. Sometimes, it’s addressed to “Baby Girl L_,” because her name wasn’t entered into the system at the hospital yet. Most of it is now addressed to her. No matter how frequently we get mail for her, my heart always skips a beat when I see it. I think my attitude has changed about it, though.

Today, we got a couple of explanation of benefits statements from the insurance company. I wasn’t upset by them, which is a change. Normally, they cause a meltdown, but today, they made me smile. I don’t think jaw-dropping NICU charges normally make anyone smile, but I felt like these statements were proof that Jillian existed. I immediately became protective of them and wanted to ensure they didn’t accidentally end up in the shredding pile. I want to hold onto them, not for record-keeping purposes, but as a memento, like the snips of her hair and her footprints. Seeing her name printed on these statements shows that she wasn’t just a dream or a figment of our imaginations. She was a beautiful, living, fighting little girl.

I’ve been doing a lot of daydreaming since Jillian died, but lately it’s been about the future. I’ve been visualizing the birth of our next baby. I think about Dave and I both crying tears of happiness and relief, and being astounded at the seemingly enormous size of that baby (even if this imagined baby only weighs five pounds, he or she will be more than three times Jillian’s weight). I haven’t held another baby since I held Jillian, and I can’t imagine the weight. I’ve already started referring to our next baby as a “dinosaur baby,” because I am trying to convince myself that he/she will be full term and GIANT).

I also think about how sad we’ll be because Jillian won’t be there, and because that baby won’t know his or her amazing big sister. Sometimes, when I’m thinking about it, I worry that I’m setting myself up for disappointment in case it doesn’t happen, but looking forward to this is often my only reason for getting out of bed. I have to believe that somehow, we’ll eventually have another baby.

Six weeks

It’s hard to believe it’s been six weeks since Jillian was born. I can’t help but think about the fact that Jillian would be that old today if she had lived. It’s hard not to picture a baby that age, even though she would still be tiny and still in the NICU. I was thinking the other day about how nervous we were to be leaving her in the hospital when I was discharged. I’d give anything to have that situation instead of this. I’ve been sick for the past two days and I keep thinking that if she were alive, I wouldn’t be able to visit and it would be next to impossible to stay away. I imagine that someday I’ll be able to live without every thought going to what could or should be, but not yet.

Yesterday, for the first time since Jillian was born, I didn’t cry once all day. I had some feelings earlier on that if I started feeling better, it would mean that I was forgetting, but that’s definitely not the case. She was on my mind all day, and I was still very sad, but I didn’t feel like I was being sucked into a black hole, which has been the norm since she died. It’s a relief to know I can feel better without forgetting. In a way, I feel like knowing this will allow me to feel even better as time goes on. Of course, I’m still a mess and have a very long way to go, but at least the pain is easing.

One month

It’s been one month since Jillian died. I’m trying to decide if I’m doing better or worse, and I just don’t know. If I’d written this a week ago, I would have better for sure, but it’s been such a tough week for me that it doesn’t feel like I’m doing better than I was a month ago. When I try to compare how I was feeling then versus now, the only difference is that I’m not in the state of shock that I was then. I think it was easier to bear then because I was in such a fog that it didn’t really feel like it was actually happening.

I was thinking this morning that I wished I had something positive to post. I’ve written this before, but I am so tired of being so sad all the time. I know this blog is such a downer, which frustrates me. The reality is that this blog is for me (and also to honor and remember Jillian), so I need to write what I need to write, but I still wish I had something happy going on. I could write about all the things I’m thankful for, but somehow even those things are negative. For example, I’m thankful that we got the time with Jillian that we did, but I can’t say that without also saying I wish she hadn’t died. I think maybe the grief is still too raw to find a happy topic.

There are things that make me smile, and I’m still trying to focus on those, even though they usually end up making me cry. My favorite thing to think about is the time the day before Jillian died when I’d ask her how much I loved her, and she’d stretch her arms out as wide as possible. I know that she didn’t know what I was asking, and I know that I was asking because she kept stretching her arms out, but it’s still one of the happiest memories I have. I also know that she really did know how much I love her.

Jillian’s hands

One of the hardest things for me is all the things that we’ll never be able to see Jillian do or experience. I remember seeing her tiny hands for the first time. They were so tiny, but so perfect, and her fingers were so long and delicate. The first thought that went through my mind was that we needed her to survive so she could grow up and wear a wedding ring on her hand. Looking back, I feel like it was kind of a strange first thought, but I still think of it every time I picture her little hands.

I have a very difficult time thinking ahead and thinking about all of the milestones she’ll never reach. I think for the rest of my life, when I see a child who is the age Jillian should be, I’m going to be thinking about her. Dates like her due date and first birthday are hard enough, but I’m scared that I’m never going to be able to get past what should have been. I know that in three months, I’m going to be thinking about the newborn I should be holding. In a year, I’ll be thinking about the baby who should be calling us “mama” and “da-da” for the first time. In 18 years, I’m going to be thinking about the girl who should be finishing high school. In 30 years, I’ll be thinking about the beautiful woman Dave should be walking down the aisle (sorry, Jilly, we weren’t going to let you out of the house until you were at least 25).

I hope that eventually I’ll be able to focus less on what should have been, but there’s a part of me that feels like I’m forgetting her if I don’t think about it. I’ve already forgotten what her first and only cries sounded like, and I’m terrified to forget anything else. I remember the moment, but I can’t hear it anymore when I close my eyes. I don’t think I can handle forgetting anything else.

A picture of Jillian

There is a wonderful organization called Now I Lay Me Down to Sleep that provides free photography to families who are experiencing the loss of a baby. A wonderful photographer came to the hospital the night that Jillian passed, and took pictures of us as a family as we prepared to say goodbye to her.

Dave and I don’t plan to share most of these photographs with anyone. We do have this picture framed and on display in our home, so I’m comfortable sharing it here. In this picture, Jillian is on my chest. I can’t help but smile when I think of this moment. She was so warm and snuggly and clearly very comfortable. Even with all the moments of doubt I’ve had about her knowing who I was, remembering the time I spent holding her makes it obvious that she knew exactly who I was.

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