Team Anna

anna_in_frozen-wideLucy, for the first time in her eight years, is coveting the hot toy of the moment: a Princess Elsa doll. A couple of weekends ago I took her to Target to spend a gift certificate she had gotten for her birthday. The shelf where Princess Elsa had once been had nothing but bare metal. Target had every other princess in the Disney kingdom, except for Elsa. Lucy paced the aisles to see if there was another toy worth spending her birthday money, but her disappointment was palpable. “Don’t worry,” I told her, like a fool. “Let’s go home and we will order one from Amazon. I am sure they have Elsas.” Well. The doll was available, sure, but the cheapest one was close to $50. For a glorified Barbie doll, which retailed for under $20 before the movie exploded, and before Adele Azeem, I mean, Idina Menzel became famous outside of Broadway geekdom.

“How come they have Anna dolls available everywhere?” Lucy asked, exasperated. I launched into an explanation of supply and demand. “You mean, nobody wants Anna?,” she asked. I asked her why she wanted Elsa, and not Anna. “Because Daphne has two of them,” she said. True, she got two for her birthday. They pretend one of them is Elsa.

What boggles the mind about the Elsa shortage is that Anna, clearly, is the heroine of the movie. Sure, Elsa gets the power ballad than won the Oscar, but it is her scrappy little sister who’s worthy of admiration.

Elsa: has powers, but sees herself as cursed. Shuts out her sister, technically for her protection, but with no explanation. Once her powers are exposed, she hits the road to “Let it Go” on her own.

Anna: rejected by her older sister, again and again, keeps trying to be her friend. At Elsa’s coronation, she holds no grudge for the isolation she has been forced to keep. When her sister’s weird powers are exposed, she is supportive. She goes through an awful lot of trouble to reach Elsa at at the top of her ice castle to save their village from eternal winter. When she offers unconditional love and support, she gets chased by an ice monster.

Elsa is pretty much the definition of passive aggressive. Anna is a problem solver, bold and empathetic. If only they had given her a better song.

Lucy, by the way, is waiting until Elsa is available without the hot toy premium.

Writing to connect, and heal

Ready for Air I did not blog, journal, or write in any organized way when Daphne was in the NICU. The emotions were too raw and ugly for me to sound coherent. Had I written, it would have been a combination of medical jargon and “this sucks,” with a lot of cursing involved. Not terribly inspiring. Also, I was afraid of something happening to Daphne, and the public exposure made me feel even more vulnerable. I do have records of how I felt and some details of what went on saved in copious emails written to a select few friends who got it then, and get it now.

Only after D had been home for a while, and after her heart surgery, I summoned the courage to write. Surprise, surprise, it was helpful in so many ways. It connected me to the preemie community, people I could count on for help, advice, and understanding ears (eyes?). Writing helped me organize my thoughts and sometimes come up with a plan, a course of action.  My semi-coherent flood of words sometimes even helped me understand what I was feeling, what was making me upset.

Long story short, I wish I had been writing all along.

Kate Hopper, a fellow preemie Mom, knows a little something about the power of telling a story. Today on Preemie Babies 101 I review her beautiful memoir, Ready for Air. I will let you click over to see what I thought of the book. If you want to win a copy of the book, you will have a chance. If you don’t feel like reading my review, read Kate’s book. There, I said it.

Anniversaries and memories

One year ago, we came home from the hospital after a grueling post-transplant week. I have said this before, but that week was in many ways harder than Daphne’s five months in the NICU. The NICU was five years ago, and some of that pain and trauma has been blunted by time, but what made the transplant post-op so difficult was that I was alone with Daphne pretty much the entire time, and I never got to leave to clear my head. In fact, I had few chances to leave the side of her bed, and she demanded physical contact with me every waking moment. By far, the most heart-wrenching aspect of her recovery was that she was clearly in pain, and expressed her misery and discomfort in a way she couldn’t when she was a neonate. There was whimpering, screaming, wailing, and begging. There was fear, protesting, and utter lack of cooperation. All completely understandable and expected under the circumstances.

Last week, when I mentioned to the Daphne that it had been a year since the surgery, she said “I remember that. It was painful and hurtful.” She has been using those two words interchangeably lately, but here she used both for emphasis. I was about to tell her that now she was OK and so healthy because of her new kidney, but I caught myself.

It’s a funny thing that we parents do. There is nothing more painful to us that our children’s pain, sadder than their sadness. To protect ourselves, and them, sometimes we have a tendency to try to convince them that their pain is not real, that their suffering is done. “You’re OK,” we say, when they are crying because they got hurt. We tell them that procedures aren’t going to hurt, when in fact they will. When they recall painful memories, we tell them that it’s passed, now everything is OK. I get that it is not good to dwell on the negative, and that we are happy when our children are happy. But in doing that, we rob them of the opportunity to talk about what bothers or hurts them, which, as all of us who blog know, can be an important way to make sense of the pain and hurt, and an essential part of healing.

Daphne is five years old. She can’t completely understand the fact that the kidney transplant saved her life and made her healthy, but she can definitely remember that it hurt and she was scared. She is entitled to share that memory, express that pain, no matter how much it hurts me. 

“It was very hurtful, and Daddy came to see me and showed me the pinch on his wrist. Daddy got to go home and we had to stay longer. You held my hand when I slept. Jill brought you coffee every morning. They made me blow bubbles, but I didn’t want to.” 

The details that she remembers come out in different ways, at different times. Thankfully, she does not remember that the resident botched inserting a Foley that she didn’t even need, and she doesn’t know that I still blame myself for not making it stop. She doesn’t remember that she didn’t smile for days, and that I was terrified her personality would never come back. She wouldn’t even believe that every time she had to take a medication, I had to beg, plead, and finally threaten. She does, however, remember how she felt that week, and only now, a year later, she is starting to talk about it. The road to healing is long, but we keep walking.

Happy 1st Kidneyversary!

What a difference a year makes!!!

March 2, 2013

Image

March 2, 2014

Image

Happy 5th birthday, Daphne

Dear Daphne,

P1030686Today, 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.

Remember when…

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 is 8 (and one month)

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.

ImageEverybody 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.

Image

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.

Image

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.

Mindbending

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.

All Caught Up?

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.

Nine-Month Transplant Update

Six-Month Update here.

ImageDaphne 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.