Ramblings

So here I am again, past midnight, exhausted and can't sleep. I avoid sleep these days...I avoid the tossing and the turning...no matter how tired I am at 9pm, I can't get myself to just get in bed and go to sleep. Even on the nights that Richard has "baby duty", when I should get uninterrupted rest, I just can't. I've found that I'm not alone, the other bereaved mothers I correspond with say the same thing. They also have trouble focusing, which I certainly do as well. I am a tad bit better...I think the med changes have helped, I have more energy, I can get out of bed easier, take care of Avery and Lily, go to work twice a week...I even laugh and smile with Avery and Lily. But at the same time I feel like it's fake or forced, and I guess to some degree it is. I never understood, until now, that going about your life without having to will yourself to do something as simple as washing your face, was a gift. One of the moms I talk to said there was a line in a movie, I think it was Sleepless in Seattle where Tom Hanks is talking to the phone therapist about the loss of his wife and he says something to the effect of "I'm going to get up each day and tell myself to breathe and I'm going to do this each and every day until I no longer have to tell myself anymore." That is what this life is now. There is no living on automatic pilot...everything is deliberate, everything is an exercise in will-power, and God's grace.

I know that the times that I am truly happy and energized are the little rest periods God gives me to get through this. I only wish these rest periods would involve actually holding Zoe in the flesh. It's been said to me that we don't grieve for the deceased, we grieve for ourselves, our loss...and it's true, I grieve because I can't hold my daughter, because I can't play with her, because I can't see that gorgeous smile or those sparkling eyes. I know she's running around in Heaven, chasing butterflies, laughing, singing, surrounded by infinite love, warmth, and happiness. I know this...but she was happy here too. Look at those pictures of her...all those smiles and those that knew her, do you remember how her little shoulders would shake when she laughed? When she was truly tickled about something? Remember how she'd shriek with joy when you played peek-a-boo with her? I used to love to watch her watch her sisters...I could just see those wheels turning in her head..."If I could just get over there I could do that too"...and she could. She was just starting to have incredible control over her body, it was doing what she wanted it to do...she was playing with toys, grabbing her feet (even her last night on Earth, they put an IV in her foot and had to wrap it up because she kept trying to grab her toes), sitting up, clapping, shaking toys, everything her sisters could do, she could too. She was getting so strong...how could this happen? How can it be accepted that something as deadly as MRSA is still here? Is just living on our bodies and can get into the blood and run rampant? How can we in this day and age allow the flu to kill someone? How with all the science and medicine and research, how can it be that my baby would have to die? How are there not enough measures in place to save a life like hers? How, when she fought so hard through almost 10 months in the NICU, through two surgeries, 14 weeks of intubation, infections, and on and on...how could she survive all of that when she weighed a mere 1lb 10oz at birth...and she could not survive this? The doctor was impressed that she battled the flu so well, someone with her degree of lung disease most certainly should have been expected to spend a week or more in the hospital with flu and pneumonia, she spent just 5 days. And she never went up on her oxygen, was back on full feeds within two days of antibiotics...she was getting better...and then two days later, she's gone! My baby is gone!

I'm still asking for dreams about her so I can relive some tangible moment with her. I watch the videos we have of her...trying to remember the feeling of holding her, the weight of her body, the tone of her muscles, the heat she gave off when she slept...just trying to grasp at anything so that I can feel that physical bond. When she was so small and first born, I was almost afraid to bond with her, we were so terrified of losing her because of her fragile state, I was afraid to love her. But I fell in love with my baby, with all of my babies. And she pushed on through...our bond was always different because we couldn't hold her until she was two months old, so the physical mother-child bonding really happened in a different way, I was never able to breastfeed, in fact she didn't even have her first oral feed until she was nearly 6 months old! I also wasn't at the hospital every day once Avery and Lily came home from the NICU, for this I felt and still feel an enormous amount of guilt. I know I did the best I could at the time, but of course looking back I wish I could have and would have done more, spent more time alone with her, spent more time talking to her and singing to her, spent more skin-to-skin time with her...I will always wish I had done more in the past and I will always wish I had more in the future. I try so hard to hold on to the fact that she was so happy. That all these things that were done to her...really didn't seem to bother her much, unless of course you woke her up before she was good and ready to get up! I look now at the little scars on Avery and Lily's feet, legs, and hands...the IV sticks, the PICC lines, the CBG heel sticks...and I just feel like each and every one of those scars was a source of pain for them, a pain that I should have taken for them. Do they seem bothered by these scars? Do they even notice them or know what they're from? No, they don't...this is all just me...depression is so selfish, it really is and I hate it! I hate it and I don't want it anymore...but I am so tired how much more will power can I muster? Can God really give me all that I need to get through this? I know He can, but I wonder sometimes, I'm not going to pretend that I don't, I do wonder. But I have to believe. I believe in Him, that is the only way I know I will truly see Zoe again. And I know I will...Heaven knows no impatience, but I sure do!

I always start out writing with the intention of telling you about Avery and Lily and of course, in my ramblings about myself, they get lost and they shouldn't. They are doing amazingly well. Walking and talking, laughing...they're starting to really play together and they hold hands when they're in their highchairs and when they're in their carseats, it is the cutest thing on the planet!!! They're doing great with their swimming lessons, they can both float but haven't been able to learn how to swim yet. Our teacher says as they walk more they'll figure out the kicking part of swimming. The lessons are really interesting, now that Lily can float by herself for a minute, the teacher kind of simulates different ways that she could potentially fall into a pool to make sure that Lily knows how to get on her back and float. She sits her on the side of the pool with her back to the water, with her front to the water, she gently lowers her into the pool straight up and down...all these different scenarios and Lily just pops right up like a cork. Avery can pretty much do the same thing but likes to kick her feet when she's on her back which isn't really conducive to successful floating. So we'll keep working on that.

They love to play outside and we've even ventured out on a playdate with one of their former nurses from the NICU and her son. We all had a great time and I think they really liked all the new and different toys and Brice was a wonderful host, he let them play with just about anything they wanted. We've also been to Lekotek. Usually our Lekotek leader comes to us, to reduce their risk of exposure to the outside world. But since it's no longer RSV season and they've been so healthy we had a play session at Lekotek which was a lot of fun for both of them. We've also got some trips planned...Stone Mountain with a good friend of mine from college and her kids, and the aquarium with two other sets of triplets...I'm really looking forward to both of these outings. We are incredibly lucky to have very wonderful friends with a house in Hilton Head. They are letting us use it for our very first family vacation. So, you see, life actually is good...but at the same time it stinks because Zoe isn't here to do all these wonderful new things with us. I wil often replay an entire day in my head as if she were here...imagining what she'd do or say. One day I'm sure she'll tell me "Mom, I was always there, I never left you."

3 months

It has been three months since our angel went to Heaven. I think I'll plant her flowers tomorrow and whisper prayers of love into the Earth for her to receive as the morning glories grow.

I miss her terribly. Her sweet smile, her raspy giggle, her pudgy tummy, her tiny feet, her thick curly hair, her knowing looks, her wide open mouth when she was truly, truly thrilled with something, her little bity hands that always curled up near her mouth when she slept, the way she smelled after a bath, and oh how she loved her bath! I miss watching her read books, I miss playing peek-a-boo (her favorite game of all time), I miss being with Ms. Linda at the Speech School and sharing her joy in Zoe's progress, I miss our visits with Ms. Peggy from Lekotek who still comes all the way to see us, but whose visits seem like something is missing...because she is. I miss watching her watch her sisters as they play and climb on top and over her, I miss watching her taking part in "steal the paci" an ongoing game among the three, I miss seeing her face light up when her Daddy walks in the room, I miss seeing her wave bye-bye to Mema, Mimi, or Namo, I miss those funny little things she'd do with her lips and tongue after her oral stim exercises, I miss watching her play with her food, I miss seeing her delight in discovering a new toy, I miss snuggling with her on the floor, the sofa, or the bed, I miss watching her roll back and forth and back and forth all over the playroom, I miss watching her grab her toes (when she left the NICU we were trying to get her to realize she had feet!). I miss dressing her in cute dresses with bows in her hair and tiny little shoes, I miss having three daughters in the flesh, I miss kissing her fat cheeks, I miss rubbing noses with her, I miss the soft feel of her skin, I miss the treatments and the meds...because I felt like I was making a difference in her life, I miss dreaming about her future. I miss her so much.

Mother's Day

Today was a wonderful day. Richard did everything he possibly could to make it perfect. The girls got me a beautiful picnic basket filled with everything you'd need for a perfect picnic, some morning glory seeds to plant for Zoe, and I got a great waffle iron (which I've been wanting to replace my $8 Wal Mart special). We had a wonderful lunch that Richard prepared and got ice cream late in the day. We just spent a beautiful, lazy day together as a family. I feared this day...as I fear any holiday or celebration. As I've written before the joy is always followed by the piercing sorrow. We laid in the grass on our front lawn this afternoon and blew bubbles into the sky and sent them to Zoe. We said hello to her and I wished so badly she was here. I always wish she was here, that never goes away.

I've had some encounters lately that make me realize how our society seems to discourage speaking of someone (especially a child) who has died. We went to a new fish market downtown and took the girls with us. Now that RSV season is over we're venturing out a bit more. Anyway, we had the girls in my Double Mountain Buggy and the owners of the shop asked if they were twins. I have resolved that I will always say "No, they are my surviving triplets." So I did and the wife went on to tell me that she lost her first son as an infant 17 years ago. We talked for a while, we connected, we shared, we even shed some tears. She said sometimes it feels like it was yesterday.

This past week I was in Florida for work and went art shopping with my client. The woman who was ringing us up saw my name and said "My daughter's name was Keira"...most people who have not lost a child would probably gloss over that one word "was" that lets you know that child is no longer here. Most people are afraid to go there...to ask about someone who has died out of fear for upsetting that person. But, I, needing every chance I get to talk about Zoe and figuring that she did too asked her "Was?...did she pass away?" She went on to tell me that her daughter died at 2 months of age due to SIDS, that was two years ago. We did the same...we talked, we shared, we cried a little...but it felt good to talk about our daughters. We needed to talk about our daughters. We exchanged emails and I hope we'll continue to correspond and support one another.

The bond you feel with mothers who have lost children is similar to that when you meet another micro-preemie mom or another high order multiple mom...there are just things in your existance that the "average" mom or person just can't relate to. I hate that I am now a part of this group...the bereaved mother's group...because it means Zoe is not here...but like I've found before, I have found a community of people who have lost their children. I have also found that, no matter the age at which the child dies or the circumstances, we all seem to need similar things...most importantly for our friends and family to acknowledge our loss, to understand that the pain will live on forever, and to talk about our children. Please, please talk about our children who have gone to Heaven. We have to talk about them, don't ever be afraid to upset us or be afraid of our tears...we will cry a day after, a month after, 20 years after the death of that child, don't ever be afraid to talk about our children, we desperately need to talk about them.

I want to share a few poems, one was sent to me by one of my readers (Kristy, thank you for sharing your story with me. I am honored that you are willing to share such an incredible and personal experience with me.) The second poem was posted in my e-newsletter from Compassionate Friends. I apologize that I do not know the names of the poets.


When God calls little children to dwell with him above,
we mortals sometimes question the wisdom of his love.
For no heartache compares with the death of one small child
who does so much to make our world seem wonderful and mild.
Perhaps God tires of calling the aged to His fold,
so He picks a rosebud before it can grow old.

God knows how much we need them, and so He takes but few,

to make the land of Heaven more beautiful to view.
Believing this is difficult, still somehow we must try.
The saddest word mankind knows will always be “Goodbye.”
So when a little child departs,
we who are left behind must realize God loves children,
angels are hard to find.


If Roses Grow in Heaven

If roses grow in Heaven,
Lord please pick a bunch for me,
Place them in my daughter's arms
and tell her they're from me.

Tell her I love her and miss her,
and when she turns to smile,
place a kiss upon her cheek
and hold her for awhile.

Because remembering her is easy,
I do it everyday,
but there's an ache within my heart
that will never go away.


And finally....some pictures of our incredibly strong survivors who are both walking and talking up a storm and even swimming! Yes, they are in swim survival classes which are going well. This program is incredible as it strives to reach all children to prevent drowning and gets us out of the house every day which is also very helpful. If you're interested go to http://www.infantswim.com/ to find a certified instructor in your area. The Today show will be doing a feature on the program on May 14th.

So that's it for now. I hope all my fellow blogging Mommies and readers had a wonderful Mother's Day.

Thanks for our cool hats Aunt Nomi

Our trip to the Yellow River Game Ranch with Richard's sister and her family, my mom and Richard's mom was a huge hit. Everyone had a great time. The girls got to pet some bunnies, we fed sheep, goats, bears, even buffalo!!

Little Cinderella Lily

Avery and Lily

I know I spend a lot of time talking about myself and Zoe and you may be wondering about how Avery and Lily are doing through all of this. I don't know exactly how they feel about Zoe's death or how their brains are processing her absence. I do know that they know who she is. We have photos of Zoe all over the house and our big beautiful canvas photo (courtesy of Stefanie Baldwin) of Zoe up in the playroom. We say good morning and good night to Zoe every single day. Lily always gives her a great big, open mouth sloppy kiss while Avery prefers to "pat" her.

When I'm alone with them I will sometimes just talk about Zoe. I'll remind them of the times they all played in the playroom together and stole eachother's paci's, or I'll remind them of our one public outing (that wasn't a doctors office or a hospital) as a family to the Christmas Tree Farm, or of their first Halloween together and how cute they were in their Disney princess costumes. I'll go on and on to try to ingrain in their memories these small snipets of time that they had with Zoe. I know they won't remember these times, but maybe, just maybe if they hear it often enough as they grow up we will have created memories for them to draw on when they start to wonder about their sister.

They always look at me while I talk and remain very still and quiet (not a common occurance these days). Lily and Avery have both pointed to the sky or the ceiling when I'm talking and uttered a little "uh?" To which I answer "Yes, your angel sister Zoe is in Heaven. She's watching over you." I don't know if doing this is harmful, I don't believe that it is. I believe we have to talk about Zoe, constantly, to keep her spirit alive. Just because she isn't here in the flesh does not make her any less a part of this family. I want her spirit to fill this house and fill our hearts. I want to feel her presence everywhere I go. I hope I'll get there soon...right now I still feel a lot of emptiness. It washes over me in waves, sometimes it's just a ripple and other times it's like a rip-tide that pulls at my heart and takes my breath away. And it's very unpredictable. I'll have a stretch of good days and then all of a sudden while doing the most mundane of tasks, I will be brought to my knees with sadness and longing.

I reached a very dark place not long ago...Richard was very worried and our grief counselors were as well. We had a very intense session that day, I was exhausted afterwards...but it helped. And I have had a good couple of days. We had a nice weekend - Richard and I actually got to be grown ups for 24 straight hours as we spent the night in Atlanta to see Bruce Springsteen and The E Street Band. We then spent the rest of the weekend with the girls, just the four of us. It was nice...almost normal.

As for that dark place...I saw a psychiatrist this week who spent an hour asking me lots and lots of questions about myself, my experience before, during and after my pregnancy, and about my family mental health history. She assured me that I am not crazy, although I often feel like I am, and she said my meds need to be adjusted. So she's weaning me off Zoloft and putting me on something else that she thinks will work better. I hope it does. She also told me to lay off the wine...did you know that a glass of wine is only 5oz! I thought I was doing okay with my "glass" of wine with dinner, but then I realized I was having more than just one glass, because my wine glasses hold more than 5oz. She said I could have half a glass...but 2.5 oz? What's the point? I guess that is the point...there isn't supposed to be a "point" right? So I haven't had any since Monday night.

She also wants me to get individual counseling in addition to the grief work that Richard and I are doing together. She also reinforced, or tried to at least, that the girls' premature birth, NICU stay, and Zoe's death are not my fault. Logically I believe her, I believe Richard, I believe everyone that tells me this...but there is still that shred of myself that says "I am their mother, I grew them inside of me, I am SUPPOSED to protect them from all harm, evil, and sickness." I know it's not logical, I know this. I know you can't do anything to get preeclampsia and I know preeclampsia takes it's toll on your body. When you develop preeclampsia, you either have the babies or everyone (including mom) dies, there is no other choice, there is no other alternative, there is no therapy to prolong the pregnancy. We bought five more days than they thought we'd have the day I was admitted...I just wish it could have been longer. I will always wish it could have been longer.

I will always wish the girls did not have to be thrust into a world of bright lights, needles, tubes, poking, proding, all this trauma they experienced so early on, when they should have been nestled in comfort in the perfect world that is a mother's womb. I know these lights and needles and tubes saved their lives, I know these medicines and therapies were necessary...but I will always wish they could have been welcomed into the world by first being brought to my arms, my kiss, my touch. I suppose I'm still grieving for that "normal" pregnancy and childbirth experience as well. I think there is a lot that has been left undealt with, because we have just been trying to exist, make it through another day, and stay together, be a family.

Richard has been so incredible, I can't say enough and I know I have a lot to say that hasn't been said. But he has been the rock through all of this. Were it not for his recent insistance I think I would still be in that dark place I found myself a couple of weeks ago. I'm getting the help I need, the help I should have gotten over a year ago. As my psychiatrist says I have Depression that is compounded by Grief. This is not something to take lightly, I know this. And for the first time in a long time I do feel like the fog is lifting, not much, just a little...like I can now see my hand in front of my face. I can see just a little of what Richard has been seeing and living with for the last 18 months and I know it's not what I want. I don't want Avery and Lily to grow up with a Mommy who is sad, lethargic, doesn't care, can't get out of bed, doesn't want to eat....I have a responsibility to show them how to work through the hardest challenges in life with grace. It is so obvious to me how early your kids start learning from you, how acutely in tune they are to your every movement and expression. I can not and will not allow myself to let them down any longer. Avery and Lily deserve better than that. Zoe deserves better than that. With God's will, this vast community of support (you all) He has graced me with, and the unconditional love of Richard, Avery, Lily, and my extended family I will make it. Day by day, baby step by baby step.