Charlotte is off at her first full day of fifth grade. How did that happen? No, really, where did the time go?
I’ve been a negligent blogger, largely because co-chairing the 60th Gold Coast Fashion Award Show has taken more time than anticipated because we’re inventing an entirely new event. We’re in the home stretch and as I did some research to fact check our program book, I came across the following post. It’s been a long time since I did an A-Z post, but if I had to write a new one, it wouldn’t be much different than what follows. I’m certainly less angry and weary, but the emotional response to Charlotte’s medical complexity still lies below the surface. I don’t think about it often because I’m way too busy hanging with my 5’1″, funny, sweet, happy FIFTH GRADER. How lucky are we?
(Your reward for reading the whole thing? Photos, of course!)
Charlotte is 5 months old today. I can hardly believe that much time has gone by. Yet so often the time has ticked by so darn slowly.
Last week a friend commented on the blog, how upbeat we seem, how informed we are, and how steadfast we remain in maintaining our sense of humor. I responded, “What choice do we have?” Trudy said, “Yes. But, how are you and Philippe doing? Really?” A lot of you have been asking the same question and we’ve done a good job deflecting your concerns up until now. But, the dam might break soon, so here’s the update you’ve all been asking for. Two caveats: First, I can’t speak for Philippe and wouldn’t even try. Second, the following may not be pretty.
How do I feel?
Angry that our little girl and we have to go through this. As Rabbi Greenberg said on Rosh Hashanah, nothing happens for a reason. There is no reason for this. It’s simply not fair (imagine me screaming that like a toddler). I feel like I’m angry all the time—I want to throw things and slam doors. But that really wouldn’t help anything so I focus on the tasks at hand each day.
Blessed to have such a beautiful, sweet little angel-baby. Charlotte has the loveliest disposition and a gorgeous smile. How could I not feel blessed when she smiles up at me first thing in the morning? And even more blessed to have the most incredible partner a girl could ask for. This is the family I was meant to have, despite our rough beginning.
Calm, from time to time 🙂
Determined to do what is best for my daughter.
Envious of people who have healthy babies, especially when I see them taking that for granted. Endlessly envious since I spent my pregnancy being envious of pregnant women whose Level II ultrasounds came back with no problems. Envy is not pretty and it is one emotion I really hate having.
Frustrated and frightened. Need I say more?
Grateful for our team of doctors, our friends, our family and our clergy. Grateful for more blessings than I can count, really.
Hopeful that Charlotte will be able to lead a long, full life.
Impatient to experience normal childhood milestones, to get through this very long recovery period, to have no more new diagnoses or issues.
Joyous when Charlotte giggles, plays, squeals, and drools.
Lucky to have good insurance and to be within driving distance of Children’s Memorial Hospital.
More in love with my husband all the time (when I don’t want to scream at him). Lots of people have told us how normal it is to alternately want to wring each other’s neck and to feel closer all the time in the first year of any baby’s life. I think Philippe and I have felt the pendulum swing both ways. Ultimately, however, we’ve been able to talk about everything and I feel that we understand each other better than we ever have. (That doesn’t mean I don’t want to slam the door in his face sometimes, just that he knows I feel that way and likes me anyway.)
Nervous about Charlotte’s future, her follow-up surgeries, her prognosis. Truncus arteriosus is a fairly rare heart defect and the repair is rather new (40 years, more or less). We really don’t know how long a life span our darling can expect or what physical limitations she might have. Clearly, she won’t be an elite athlete (was that ever in her future?!), but will she be able to ski?
Overwhelmed. I’ll let you all use your imagination—start with a medication schedule, doctors’ appointments, feeding logs, keeping house, and trying to have a life as well.
Powerless. There is nothing worse than not being able to fix what is wrong with your child. I’ve never considered myself a control freak, but right now I feel completely out-of-control, maybe “without control” is a better way to phrase it. Being at the mercy of Charlotte’s condition makes me want to scream sometimes.
Restless. My yoga practice has suffered enormously. I get to one class a week, but have not been able to reestablish a home practice or to get back to the gym regularly. With flu season coming on, there’s a good chance we can’t take Charlotte to the gym daycare until spring, so my yoga practice likely won’t improve until then. Given that yoga is the main thing that helps me stay calm and centered, I’m imagining a very long winter.
Surrounded by the love our friends and family. I take comfort in my mother-in-law and father-in-law’s phone calls—though they have not yet met their granddaughter, their concern embraces her from across the ocean. My mother, siblings, nieces and cousins have been a source of strength to us. And the outpouring of support from our friends continues to take my breath away. Charlotte will grow up knowing what an incredible community she has entered. Your thoughts and prayers give her such strength. As Valerie Slotnik would tell us, Charlotte is lucky to have been born into this family, and to have all of you in her life.
Tired. Tired like a toddler who cries for no reason just because she’s tired. I do that a lot. It makes Philippe crazy.
Very blessed, grateful, privileged and lucky. In the PICU we’ve seen parents who have to deal with so much more than we do. I really don’t know how they do it. I’m constantly inspired by my friend Debra’s sister Lauren. Lauren and Richard’s twins were born very early, ten years ago. The girls are medically complex, to say the least, but their mother makes sure they lead as regular a life as possible (including sleep-away camp). Lauren has been my hero for a decade and now she is my role model. I still don’t know how she does it.
Weary, bone-weary. It’s different than tired. Weary is an emotional exhaustion that is hard to explain.
X is impossible
Yoga-mama. Okay, this isn’t an emotion or an adjective. Yoga helps me feel centered and strong, emotionally and physically. My teacher, Dorie Silverman, reminds us that in yoga philosophy your birthday is the day “the divine” chose to inhabit you. On our birthday each year, and every time we step onto our yoga mats, we remind ourselves of this divine spirit. We go to the mats to love and take care of ourselves; Philippe and I go to synagogue and celebrate Shabbat for the same reason. To take care of Charlotte we have to take care of ourselves and our relationship. Yoga has proven more helpful to me in that respect than therapy ever was.
Z, like X, is impossible. But it gives me an opportunity to end on this note: No matter how angry, frightened or weary I am, I am always grateful for the blessings. In many respects, I have no choice. Charlotte needs us to remember how much we wanted her, what we went through to get pregnant with her, and why we fight every day to get her healthy. Some of you may remember our wedding vows—Rabbi Cohen had us write letters to each other about what we loved in the other person and he talked about those qualities in our ceremony. I’m embarrassed sometimes by my blessings and privilege–Philippe is still my best friend, my pillar and my reality check. He makes me smile. I’m so grateful to have him in my life. If we’ve maintained our sense of humor, it is because we know the only way to make it through this difficult time is to be grateful and to keep laughing. Laughing is what we do, what we’ve always done, and what we do best. Really, as I said to Trudy, what choice do we have?
(p.s. We have sold 710 tickets out of 1,015 available for the philanthropic event of the season. Don’t miss out.. Go to http://www.gcfas.com and buy your tickets now. You’ll get to see how great Charlotte is doing if you attend the soirée with us!)