What a difference a year makes!!!
March 2, 2013
March 2, 2014
Today, you are five years old. It is impossible to express the weight of this statement in words. Once, we didn’t know you would ever be five. We certainly didn’t know that you would be this kind of five: strong, happy, vibrant, charming, beautiful, funny, and full of the kind of determination that gets you across each monumental challenge that has been thrown your way. In the past year you have gained an organ and a whole new life. You were so, so fragile a year ago. Today, you enjoy what I always hoped for you: a normal, healthy childhood.
Every morning, you bound into our bedroom, your feet thump-thump-thumping across the hall. When you catch my eye, you flash the most glorious smile, bright enough to see in the dark. You have only been awake for a few minutes, but you have things to say. You climb into bed with us, and you cuddle. You are generous with kisses and cuddles, demanding even. I always wonder if, having once shared my womb with a twin sister with nothing between you, you will always crave physical closeness. In those morning moments, you want to know the plan for your day. Is there school? Who are we going to see? What are we going to do? You tackle your day with gusto. This year, you were finally healthy enough to become an integral part of your class at school, and you have absolutely blossomed. You have learned, made friends, and gained enough confidence to participate in all activities. Watching you develop close friendships has been a particular treat, after having to keep you isolated from the world for your first few years. You are a good friend, the kind of friend who wants your birthday cake to be the kind that your friend likes, even if she likes vanilla and you prefer chocolate.
You adore your big sister, and she loves you right back. Lucy always says that your laughter is the sweetest sound in the world. I know that being away from her is a little uncomfortable for you, but you are slowly becoming your own person, in addition to Lucy’s little sister. The two of you can play in peace for hours sometimes, which is a sign of how big you now are. Your mind is busy, and you have a constant twinkle in your eye that can go from joyful to naughty, depending on your mood. You are bold, strong-willed, and it is almost impossible to change your mind. As frustrating as these qualities can be sometimes, I know they have kept you alive. I also know that they will take you very very far, wherever you want to go.
My darling child, I always tell you that I love you like crazy, which you think is really funny. When you were first born, that love was mixed with such fear that it felt mostly like pain. Now, it is painted with pride in your strength, joy in your accomplishments, awe at your managing to be a regular little girl through everything you have gone through. I never take you for granted, even when you press my every button. I am still amazed by everything you can do. I can’t imagine our lives without you, your joy, your noise, your delightful stories, your wacky sense of humor. You know that every day is an adventure, and I can’t wait to see all the fun you will have. Happy birthday, little Doo.
Daphne would’t eat, grow, or gain weight? Remember when we saw four different GI doctors, countless feeding therapists, and weighed her food and counted calories obsessively? Ah, those days sucked…. I share some of what we learned, the hard way, on Preemie Babies 101Babies 101. Click on over!
Lucy, today you are eight years and one month old. Why have I waited a month to write this birthday note? Because on your birthday a month ago you were sick, we had an ice storm, and we had to cancel the theater outing I had carefully planned months in advance. You were angry. You were angry at the weather, at me (for having you in January), and the germs that made you sick. Mainly, you were angry at me. At eight, you are starting to show flashes of the teenager you will be someday, and it scares me a little. Yet, sometimes, when your face is at rest I can still see traces of the round-cheeked baby you once were.
Everybody who meets you remarks that you are stunningly beautiful. You remain, so far, completely doubtful of this fact. Your very dark hair is still curly, your skin is fair, and you have freckles like Daddy but you look so much like I did as a child. Everyone who gets to know you learns that you are incredibly loyal and kind. You are empathetic to a fault. You worry about the feelings of those you know, as well as strangers. When I complain of having had a bad or exhausting day, you perch on the back of the couch behind me and rub my neck and scratch my head. You can sniff out injustices in the world and in your own home, and you are not afraid to stage a protest whenever necessary. I am so proud of that instinct, and hope you continue to be bold enough to speak out when something is not right.
You remain your sister’s everything. She looks up to you, follows you around, wants to do everything you do, the same exact way. She demands your attention, and sometimes goes to extremes to get it (she likes to use her teeth as attention-getting tools). When she was in the hospital after her kidney transplant, she did not smile for days. The first time she saw your face and heard your voice on Skype, she smiled. Anybody who knows Daphne, knows you by extension because she talks about you nonstop. With great power comes great responsibility, and you do not shy away from it. You are a kind, patient, affectionate older sister. You put up with so much crap from her, I don’t know how you do it. You instinctively know to protect her when she needs it, and to push her into the world when it’s safe. She is so, so lucky to have you.
You continue to love learning, and this year you have become an avid reader. I enjoy reading with you and to you, but nothing beats listening to you read out loud. For the record, you hate it and always start out whispering. A few paragraphs in, your voice comes out and it is magnificent. You continue to enjoy dance and all kinds of music. You love arts & crafts. You do not, at this point, enjoy sports (I apologize for the unathletic gene you definitely got from me). I hope you know that even if you shy away from organized sports, you can still love moving and keeping your body strong and healthy. I had a chance to stay home with you guys for a couple of months when I wasn’t working, and every time I picked you up at school you had so many stories to tell, fresh from the day in your busy mind . It’s amazing to hear the details of your day.
My beautiful, sweet, Lucy-Loo, life has been hard for you sometimes. Having a sister who has been so sick, parents who can be very stressed, changes, more changes. You have proven yourself a resilient child who holds no grudges, and we continue to love seeing you grow up. I love you the mostest.
Last week I took Daphne into the city for a clinic appointment (everything is fine, uneventful). We got stuck in traffic and our usual 30-minute drive to the hospital took almost two hours, which meant the parking lot was packed. We drove all the way up to the roof and ended up parking at the same spot where my mom and I had parked almost five years ago, the morning I was admitted for observation with the twins. I cannot swear it was the very same spot, but it was close. Something about the frigid morning, blustery winds, and that walk to the elevator with my chin tucked into my scarf took me right back. My memories of that day are as sharp and jagged as the city’s skyline against the winter blue sky. The wilted asparagus on my hospital tray. The blood on my gown from the steroid shot. Mostly, I remember how I felt, relieved to have the two babies on monitors, finally.
This is where my mind likes to take a little journey. This is how it goes: it goes back to that morning and the hope that I would be in the hospital for a month, and deliver the twins safely. The next stop is: this outcome is not what I wanted. This is wrong. Then, the mind takes a sharp turn and races in the opposite direction: another possible outcome would have been to lose both children, and we have Daphne. We came so close to the horrible outcome, so many times. Next stop: horrible guilt, immediately followed by an urge to grab Daphne and squeeze her tight, protect her from all the horrible things life can throw at her. This process takes maybe 10 seconds, and I know it is a natural result of the trauma we experienced. I don’t even try to stop it anymore. I just acknowledge it and move on.
This particular morning last week, Daphne happened to be standing right next to me as my mind took its little journey. I gripped her little rainbow-mitten hand, kissed the top of her Hello Kitty hat. She was blissfully unaware of the storm inside my head, and gave me grief about shutting off the car engine while a song she really liked was playing on the radio.
Daphne will be five in a month, and being her mom has been my life-defining experience. Losing Leah, keeping Daphne, fighting like mad to keep her healthy, make her strong. The duality of this experience colors everything in my life, like the darkest pigment. You can mix it, you can water it down, but it’s always there.
I know that awful things can happen, I expect them to happen. I also know that life goes on no matter what gets dumped on your head, and wonderful things keep happening too.
We are back from Brazil, and if you follow us on FB or Twitter, you know that it took us over 40 hours to get home – our luggage arrived even later. The vacation was wonderful, and I’ve had to spend some time looking at photos to remember that. Daphne did great. Better than her mother, I have to confess.
For now, I’d love it if you could read my piece on PreemieBabies 101 today. The issue of “catching up” creates a lot of anxiety and angst among preemie families. Please feel free to share your thoughts, whether you agree or disagree.
Six-Month Update here.
Daphne has had Zev’s kidney for a little over nine months (insert your own pregnancy jokes here, I can’t think of any). Yesterday I took her to the clinic for a check-up and labs prior to our Brazil trip.
Our little girl is quickly becoming not so little. Yesterday’s weight: 35lbs. She has gained 3lbs in 3 months. She is a little over 40″ tall. The doctors are thrilled with how good she looks. At least two of them remarked that she looks like a different child. She is getting stronger too, according to her PT. Her endurance is better, and she is gaining more muscle every day.
After her scary little bout of CMV, she was on yucky antiviral meds for a while. After a few negative labs, they removed the antiviral and she was OK. Until today. I got a call from the doctor that the CMV has crept up and this time they want to try lowering the immunosuppression just a little bit and see if her body can clear it, since the virus is barely detectable. In three months, at the year mark, they will lower the meds anyway, so it makes sense to try, especially considering how toxic the antiviral is. By the way, I know this is not interesting at all to anybody who’s not related to Daphne, or a doctor, or another transplant parent. Oh well. I need to keep track of what has been done, and when.
I am looking forward to letting her immune system bounce back a little bit because she has had a cold pretty much since the weather got cold. She has no fever, continues to eat well, but the nose shows no sign of unstuffing. The 10-hour flight will be really fun.
Other than that, her iron stores are wicked low, so we need to be more consistent about giving her a supplement.
BUT – everything else continues to go well. The child is bouncier and naughtier than ever. She loves school, and this year we have witnessed such amazing social development. She has made friends (including one very special best friend she loves – a real one, not Bob Dylan), gained a lot of confidence, and has learned SO much.
We will repeat labs when we come back from Brazil to see what happens with the CMV. Until then…. fingers crossed. Again.
4 Trader Joe’s Fish Nuggets, dipped in mayo
One bowl of soup: chicken broth, chopped onions, carrots, celery, sweet potato, chickpeas, whole wheat Israeli couscous
It still hasn’t gotten old. I’d call it a miracle if I didn’t know how many hours of feeding therapy she has gone through. Oh, and the new kidney helped too.
Her sister, by the way, now eats pizza and mac n’ cheese. And that’s it. But she eats enough of it to grow nicely, so I am not concerned.
If you are connected with us on Facebook, you may have learned that Daphne has a new imaginary friend. His name is Dylan. As in, Bob Dylan. The friendship emerged during a long ride back to New York from Baltimore, and Daphne’s grandparents, aunt, and sister were treated to quite a few stories about him. For instance, she taught him how to spin a dreidel. When told that Dylan is actually Jewish, she said “yeah, but he doesn’t know anything about Chanukah.” Considering he did record a Christmas album, maybe the kid is on to something. Other tidbits we have learned: he likes cheesecake, he lives in the corner, and he wrote Positively Fourth Street for her. Yes, for her. The funniest thing is that, according to Wikipedia (the source of all out-of-pocket trivia), “the song also may concern Dylan’s stay at the University of Minnesota in Minneapolis, where 4th Street S.E. is one of the two main roads crossing through the part of campus known as Dinkytown, where Dylan lived and performed.“
You may not know that I often call Daphne Dinky-Doo. Lucy thinks this is absolute proof that her sister actually knows Bob Dylan. Never mind the song was written in the 60′s.
Just now, I asked Daphne to go get in the shower and she told me she can’t because she is meeting Bob Dylan. I asked her what she is doing with him: “I will tell you when I get back,” she said.
I’ll keep everyone posted.
On my first official day of unemployment, for the first time in my daughter’s almost eight years, I joined her class for a field trip. It was unseasonably warm and sunny, and a few clusters of colorful leaves still held strong to the trees, trying to delay the inevitable. We went to Phillipsburg Manor, which as the website description states, was once a working farm that used to “rely on a community of 23 enslaved Africans to operate the complex.”
The night before the field trip, I wondered out loud to my husband how much discussion of these slaves would take place during the visit. We have not discussed slavery with L yet. We have not told her about 9/11, or the Holocaust, and a year ago, I made sure she did not hear about the massacre at Sandy Hook.