Leila's Angel Day

 We celebrated Leila this weekend. Her angel day was the 11th. Three years ago we were miserable. Today we're ok. It's nice to be able to think of her with a smile sometimes. I didn't cry one single time this summer until the day before.  And this summer I lived, for the most part, in the present and not in the past. It makes me feel good to know that I can enjoy the thought of Leila and feel good about being her Mommy instead of sad all the time.

The girls and I began Leila's weekend with a visit to Miami Valley Hospital where we dropped off 128 Teeny Tears bereavement diapers for 64 families. The thought of donating these diapers in Leila's name really helped me get through this year. Leila's helping us to do something kind and generous for other grieving families and, while it makes me cry to type this sentence, it's heartwarming to help others during their saddest time. Families will cling to these special keepsakes the way I cling to the only little outfit Leila ever wore.

On Saturday we visited St. Albert the Great in Kettering. Right around the time the twins were born the church provided us an opportunity to dedicate a brick at their new tranquility fountain. Dave had one dedicated to Leila. After all this time we had never visited her brick. We stopped going to mass when Chloe came from the hospital and didn't know where the tranquility fountain was so it took a bit of wandering but we finally found it. Dave and Solana got there first. Chloe and I were slow to catch up. As we approached my heart was beating fast. I had this feeling of dread and fear like I was going to see something I didn't really want to see. It was weird. I took a deep breath and readied myself as we approached. And there it was. It was real. She's really gone and her name is memorialized on a brick. It's the one front and center before the fountain.

After Chloe's nap we sent Leila her balloons with special messages and then enjoyed some angel food cake with strawberries and whipped cream for her special day. The girls were happy for the cake.

If she were here today Leila Marie would look a lot like her identical twin, Chloe Bea. Beautiful.

Bye Leila

Today at breakfast Chloe started saying, "Bye Leila. Bye Leila. Bye Leila. Bye Leila." Over and over and over and over and over. It was cute and she kept changing the pitch every time she said it. I smiled and she knew she was being cute. She smiled back and kept saying it. First, I thought, "How cool. We don't say Leila's name a lot to her. It's almost as though Leila's sending her thoughts from heaven and they're having a connection."

But the truth is I know she's just playing with sounds and trying out new words. When she pronounced "Chloe" as "Lola" I thought, "Hmm. That's odd." She's been calling me "Lala" lately. That's what the babies call my sister so I've been trying to put a stop to that. But this morning was just too much. My mind went to that place...the sister she should be babbling with...the twin she'll never experience. I hate feeling that way and having those thoughts. I wish I didn't have to.

There's a set of identical twins on Solana's soccer team this year. I've taken to referring to them "the sisters" and it somehow makes me feel better.

Their Take on Leila's Day

Solana's Take:



Chloe's Take:

Leila's 2nd Angel Day

We spent yesterday remembering, thinking and talking about Leila. After dropping Solana off at soccer camp Chloe and I met my friend, Kim, for breakfast. She'd invited me several days earlier and I was looking forward to having my morning occupied but thought that she just happened to be off that day. When we arrived Kim gave us a beautiful little pot of flowers and said breakfast was her treat. I didn't think anyone would remember and was shocked and touched by her thoughtfulness. Cry 1.

Then my mom sent me a lovely text. Cry 2.

I don't talk about Leila a lot but sometimes it's completely appropriate and a fluid part of the conversation for me to mention her or the "twins." Sometimes I think it makes people uncomfortable and I imagine they rather wish I didn't. I feel like I certainly don't try to shove my grief in anyone's face and I usually speak matter-of-factly. But I also don't try to hide my thoughts of Chloe's twinness or Leila's existence either. If it comes to mind and makes sense I'll just say it. Yesterday I posted something on Facebook about Leila and 20 people commented saying wonderful sweet things about her. It felt so lovely to have her recognized and remembered. I love her so much! Cry 3.

My sister, Leticia, prefers to text me personal messages rather than comment on FB. She did and it was poetic. Cry 4.

After soccer the girls and I ate lunch and then Chloe laid down for her nap. Solana helped me bakc a carrot cake for Leila's special day.

Then we went to Kroger for cream cheese (icing, of course), balloons, and a few other things before stopping at the local bakery for a take-n-bake pizza. By the time Dave got home the pizza was ready and the cake only needed icing. He brought flowers and said they were for all of us but Solana was pretty insistent that they be for Leila. So be it. Solana, Dave, and I then gave a team effort designing and decorating the cake. It came out beautiful. And, if I do say so myself, Solana and I bake the BEST carrot cake.

Solana asked if she could make the peace sign in the picture. (?)


We sat down at the table to eat and I suggested Dave say the prayer. Have you ever noticed that, even in a moment of weakness when you are just a hairs·breadth away from crying, you can still be strong and stoic if someone next to you needs that of you? I ended up saying the prayer. Besides, I'd already cried 4 times that day.

Then we took our balloons outside and wrote messages to Leila. We each sent her one but Chloe got to send her two. Since she is her twin and all... It was sweet and perfect. I like celebrating Leila on her special day. It makes me feel happy and connected to her. And I think it's good for all of us.

Thinking of Leila

Today is the 2nd anniversary of Leila's angel day. I try to think of it as a good day for her - the day she got the privilege of donning her wings and joining the angels in heaven. We'll do a little something for her this afternoon.

The reality, though, is that this is the 2nd anniversary of a really really really sad day and sad time for us. It starts in April every year. I start thinking about what we were doing two years ago. On april 8th we found out I was pregnant. A few weeks later we found out we were having twins. On July 7th we found out we were having girls and that they had TTTS. I hid my pregnancy planner from myself last year - couldn't bear to read my notes and know the exact dates of the laser surgery and Leila's blood transfusion. I was sort of a mess. I secretly cried ALL THE TIME.

This year has been different. The sadness is still there but definitely dulled. Dave asked me a few times "What's up? Why are you so quiet?" Then a friend asked me if she'd done something wrong because I was being so quiet. I honestly didn't know what my problem was. In retrospect I think it was just the summertime blues kicking in for me and I hadn't recognized it. We were diagnosed with TTTS on July 7th. So between July 7th and August 11th my mind sometimes flutters back to what was happening two years earlier. Was this the day we drove to Columbus to have laser surgery? Or was this the day we had one of those marathon hour-long ultrasounds?

I went with a friend to see Harry Potter a few days ago and literally cried the entire movie. I often cry at movies. Any time there's suspense and the characters feel stress...I cry. It's silly, I know. But this movie really got me. Dave saw the movie right after me and, when he came home, mentioned that he understood my crying toward the end but didn't really know why I cried at the beginning. To this I responded by sobbing and then felt stupid. Still crying and acting somewhat like a lunatic I left him to wonder what in the world was happening and ran to the back room to dig out my old pregnancy planner for the first time in a year and a half. It wasn't until then that I knew for sure - that was the day Leila had her blood transfusion. Just a few days before she died.

For the most part I've been fine. It even occurred to me once or twice that perhaps I should be a bit sadder. I haven't cried all that much this year. Of course we don't need to mope around like zombies all the time missing Leila to prove that we love her...but that little Mommy guilt slips in every once in a while. Maybe I should write about her more..talk about her more...think about her more. No. It's fine. She knows.

I have a very busy day planned and am anxious to see how it goes...

Moment of Personal Weakness

We went out to dinner Friday night and I said/thought/felt something that I regret. We were seated right next to a big table of about 10. It looked like two sets of grandparents, parents, and children. Among the children were two little girls - identical twins that looked to be about the same age as Chloe. The mother was seated in between the two high chairs.

My first thought, "Oh great. Here we go." And then one of the twins started screeching and throwing a little tantrum in her seat. The mom, who looked like she just left an important business meeting, was at a complete loss for what to do. For a moment, I wondered if it was perhaps, an aunt...? Then the other twin got in on the action and they sort of took turns making dinner as unpleasant as possible for the mom.

Did I feel sympathy for her. Nope. I felt evilly satisfied. I sort of enjoyed her misery. At one point I noticed Dave look over at them and I thought I saw a look of longing cross his face. I snidely remarked, "It's easier being around twins when they're being totally bratty."

He smiled politely but did not comment. I have no idea what he thought of my comment but I know what he should have thought. It kind of sucks to get caught being ugly. I know that was me protecting myself. But perhaps I can take care of myself other ways than being mean to others who have what I lost. After all, I graduated elementary school years ago...

Stephen Parrish

An old friend from Germany recently asked me if it would be ok for him to write an essay inspired by Leila. His name is Stephen Parrish. He used to be my boss and we were out of touch for about 9 years until I found him on Facebook. He's a published author (his novel, Tavernier Stones, is really good) and a blogger. Of course I agreed. As you'll read in his essay, his daughter was also born very premature. He's followed our story since I was pregnant with the twins and obviously felt a connection. I love his essay and his message. It's beautiful. Please take a read.

Stephen Parrish - Leila Marie

After Steve posted this essay he notified me that, inspired by my story, a prolific author decided to write a book about her life experiences (including a miscarriage). Another friend told me that her cousin lost her full-term son a few days after he was born. Her family wasn't incredibly supportive and told her she could "have more kids." She finally got the nerve to share pictures of her son and the blog "really made her very, very happy--it put into words what she had been feeling." It's amazing how many people Leila has touched. She's one amazing little angel. I'm so thankful for her...and to Steve and anyone who keeps Leila alive in their thoughts and words.

Amazing

My sister, Leticia, called me today to tell me about one of her friends who has been following Chloe's story way back since we still had Chloe and Leila and were fighting TTTS. Unbeknownst to me, this friend (I'll call her 'Jane') continued following Chloe's blog even after the twins were born.

Today Jane called Leticia to tell her that they're pregnant with identical twins that share a placenta (putting them at risk for TTTS). Because Jane knew all about Chloe and Leila's story she immediately asked her OB about TTTS and if she would be switched to a specialist. His reply was something like: Oh, that's very rare and you shouldn't worry about it.

Knowing the dangers of TTTS Jane decided that simply wasn't good enough. She began seeing a specialist who immediately put her on bedrest (at about 20 weeks) and a high protein diet. Jane wanted Leticia to tell me that the only reason she didn't accept the first OB's flippant answer was because of our twins and the fact that we shared their story. I'm crying as I type this - unable to convey how it makes me feel to hear that. How amazing to know that we helped inform a mother so that she can do everything possible to save her precious babies! I pray that she has a long and healthy pregnancy!

Milestone for Cyndi

I don't think I blog a lot about Leila, how much I miss her, how I think about her every day and wonder what it would be like if she were here with us. The other day Chloe and I were playing in the mirror - waving to ourselves and having fun. Suddenly she was right against the mirror and looked away from it at just the right angle. I suddenly saw Chloe and Leila playing together side-by-side. I cried, of course, like I do sometimes.

Mid-December to January was a particularly difficult time for me. I was severely, yet functionally, depressed. Bedtime was miserable and I spent hours upon hours laying there crying - re-living my pregnancy. I analyzed everything I ate, said, thought, and did; trying to determine what I did wrong and beating myself up for any perceived mistakes. I'd torture myself remembering the surgeries, the "I'm sorry" moment, my water breaking, the birth. And then I topped it all off with a thick slathering of guilt at being such an ugly unappreciative person. Why couldn't I just be happy and thankful for what I do have? I dreaded rocking Chloe to sleep, going to bed, and waking up. Those were the worst times for me when the bad thoughts invaded my head without so much as a knock at the door. I cried all day and through the night but managed to do it in secret so nobody knew. I didn't want to blog about my misery so I didn't blog at all. After the second morning of staying in bed way too long I called a friend who also lost a twin. She said all the right things within the first five minutes and then we talked for another two hours just for fun. Her name is Megan and she was my hero that day. Anyway, I've been feeling much better since then and still plan to talk to a grief counselor but not until I feel bad again.

Whew! I'm glad to finally clear the air about December. Somehow I feel like I've been lying all this time since I never addressed it.

Now to the main reason for today's entry. Solana attended a birthday party today. It was a swim party and I sat on the bleachers with two other moms. I quickly learned that both of them have twins. They asked if Solana was my only child and I said that I also have an 18 month-old. Then I felt a little upset that I couldn't join in as another twin mom. "It's not fair that I have to keep Chloe's twin-ness and Leila a secret in order to not be a 'downer'," I thought. Then I said to myself, "what the heck!" I straightened my back and at the next appropriate opportunity, "Actually, Chloe's an identical, too." I quickly told how the girls had TTTS, we had surgery, lost Leila, 11 days later Chloe was born at 24 weeks, and spent 5 months in the NICU. "She's AMAZING," I said, "She may have chronic lung disease, brittle bones, vision problems, and developmental delays, but she's a firecracker and will probably be my tomboy!" It wasn't weird. I wasn't a downer. I did not compel them to say, "I'm sorry for your loss." It was natural and honest and it felt good! One of the moms went on to say how uncomfortable her pregnancy was because her twins were born at 40 weeks and over 7lbs each. Nothing. I recognized her insensitivity but it didn't bother me and I didn't judge her for it. I actually thought, "Yeah, that probably was pretty uncomfortable." The other mom said she'd love to meet Chloe because she sounds like 'somethin' else'. That made me happy.

I don't know what came over me or how I was able to feel so footloose and fancy free today. I came home and told Dave right away about my experience. I was kind of emotional as I told him. My voice quivered and my eyes welled but it was more because I felt proud of myself. I know I'm not "over" the loss of Leila. I never will be. I'm not even "over" the difficulty of seeing or hearing about twins. It's like peaks and valleys, I think. Today was a peak - maybe the highest one I've experienced. I'm happy for myself and hope this feeling lasts...at least for a while.