I’m sitting here in the hospital room with the lights out, room lit only by the mid-day Durham sun through the blinds. Zoe is asleep, her mom is off to see our 3 year old, Maya, who is finally getting to come join us in town today. She’s been unable to join us since she had camp this past week, and we had to give her a few days past that to be sure she didn’t acquire some fun new virus from the petri dish that is preschool.
I’ve been trying to watch the World Cup whenever I find a spare moment, but sadly the only channel that it comes in on at the hospital is Univision, the Spanish language channel. As such the only sound here is the drone of the massive A/C above us and drone of vuvuzelas from the TV, with an occasional beep from Zoe’s IV. I have a couple of Father’s Day cards here that I haven’t found time to open yet, since it hasn’t really felt like Father’s Day yet.
Zoe has been doing pretty well so far with her Melphalan. She received her second and final dose this morning, and so far we’ve only seen some passing painful moments, nothing really persistent yet. She does have the first signs of Mucositis at this point. We have been giving her a little medication for pain whenever we see that — Zoe is really a calm and unfussy baby, so when she is actually in pain it’s easy to tell. I suppose we’d all wish we never had to learn how to tell when our baby is in pain, that they might not have to ever endure pain, but that’s not how things turn out.
I’ve been stressed the past few days. I haven’t been able to put a finger on exactly what aspect of all of this is causing it, but it’s there. It’s not the routine of the hospital, the living away from home, the poor quality of sleep or catch-as-catch-can mealtimes — I can manage those. If I had to try and pin point it, I’d say it’s the uncertainty.
I’ve always been an unusually optimistic person. I find myself constantly, compulsively, finding a silver lining in most everything that’s happened so far in life, to myself or to others in conversation with them. In time I’ve come to see it as a talent, one that comes in handy with great regularity in my marriage and as a father to a toddler. I’m sure it has it’s moments of being annoying too, but you’d have to ask my wife about that.
Having a child very sick has been a real challenge to that, the optimistic side of me. I can’t think of a time when I’ve ever been forced to really challenge my perception of the world at this level, such that I might wonder if my optimism is truly unfounded.
It’s not faith, per se, that generates my optimism, but rather an innate sense that things tend to work out for the best in time. It can be naive at times, and I know that, but it has served me well so I choose to embrace the instinct, not reject it. Those times that it turns out later to have been naive do not outweigh the general positivity that it gives me.
So I find myself asking, where is the bright side to this? I do not believe it serves a greater cause to have my child born with a dysfunctional immune system, but I do believe that when people are given opportunities to face hardships, it can change them for the better if they let it.
For my wife and I it’s brought us closer in many ways, despite the moments of stress. Our marriage is young still, but events like this give it depth that might take many more years to attain.
Before we were married, I took time off from work to take a driving trip across country. I had been planning it for a year, since before we began dating, but when the time came to go I invited her to come. We had been dating for two months and I wanted to spend a month with her in a car and a tent. Everyone thought we were crazy.
We made it though, it was one of the best months of my life. When we came back her friends told her if she could stand that she should marry me. They were right. The time in the hospital has only proven again to me that we can weather anything together.
For our toddler, Maya, it has been hard. She has had to be away from her parents much more than we would like, but it has also given her something she never would have had otherwise — a very deep and close relationship to her grandparents, who have taken care of her these past months whenever we cannot. I don’t yet know what she will take away from that later as a young woman, but I feel sure that the experience has been enriching for her.
The time in the hospital has also given Maya an awareness of medicine and doctors that she might not have had until later in life. She has already told us that she will become a doctor. Not wants to, will. I don’t recall what I wanted to be when I was 3, but I can assure you it was probably something much closer to Han Solo than a transplant doctor.
For myself, well, others could probably tell me more than I know myself at this point. I know that I’ve renewed my interest in writing, not just here but in other ways. I know that I am more aware, moment to moment, of my children than I was when we were in our routine. I know much more about what it is to be a father than I ever imagined there was to know, with still so much to learn.
None of this implies that it’s ok that Zoe got sick. It’s not. We’ve spent more time than we should have worrying about what we could have done differently, but unfortunately there just isn’t anything. The worrying is a way of coping. Another, for me, is finding the good that can come of this.
Zoe will get through this. I have my moments of uncertainty, but somehow I know she will. We have more confidence now than we did a month ago or a week ago, even. Seeing the 9 week old baby next door, who is a month past transplant, looking as healthy as any baby should will do that for you.
Our family will get through this too and, I have to believe, we’ll be the better for it.
Happy Father’s Day! Keep the faith it will be ok. I thought it would be forever before we hti 1 year post tranplant and here we are day+319 keep the faith. Slow and steady wins the race
An excellent post. Extremely well said. We saw Maya and her mom Thursday at Camp Create at St. Paul’s when we picked Stella up. You have a strong family. Hang in there. (Andrew and Gina will laugh if they see my comment. “Hang in there” has been my profound advice to them for years. So far, so good.)
Evan, your post reminds me of a poem by Mary Oliver:
To live in this world
you must be able
to do three things:
to love what is mortal,
to hold it
against your bones knowing
your own life depends on it;
and, when the time comes to let it go,
to let it go.
All those who love must face the fact of loss. It is always a matter of time, and we never know how long we’ll have. Do keep fighting for, and enjoying, every moment with your sweet baby Zoe, as well as your awesome wife, darling Maya, and all the others you hold dear.
Thank you for sharing your hopes and fears in this way, and for reminding me what Father’s Day, and every day, should be about.
Happy fathers day!!
I’m so glad Zoe is doing well, always keep your faith Zoe looks like a strong little girl and has wonderful parents. Wish you all the best, god bless you all.
First and for most Happy Father’s Day to one amazing daddy. Now as for everything you wrote today, I hear ya. Everyday was and still is an uncertainty. Kris and I have felt everything you and your wife are feeling. Please know this with every passing day wether it be good or not so good, you are a very strong family and that in itself is something very special. Zoe is very lucky to have a mommy & daddy that love her so much. It’s times like this when I wish I could take all of the pain and uncertainty away for all our histio famies. We pray everynight for Zoe. Please feel free anytime you need to, to send an email. If you ever need to write and vent just put my address in the to column. You are strong and you will all get through this. We are all praying for you.
Much love and understanding,
Shana, Kris & Maya Gordon
Evan, I love this post. Your ability to be strong yet vulnerable amaze me. The way you communicate those feelings is so endearing. Our daughters are incredibly fortunate to have you as their dad. Optimism, yes, optimism!
First off Happy Fathers Day! I am Lynn a friend of your moms, I have been reading your journals for the past few months, with each entry it is evident you have your mothers gift of words. She is amazing woman and your dad is awesome as well. I am amazed at your calmness in this situation, your optimistic outlook is a gift from God. Not many people can walk through fire with the grace you have shown. Know that daily your family is in our thoughts and prayers. Go with your instinct is has and is serving you well. Again Happy Fathers Day to the most Amazing man I have yet to meet.
I so enjoyed reading for your post. You are an amazing father and from your post you can see how much you love all your girls,
Michelle, Zoe, and Maya!
I know you and Michelle must be happy that Maya can join you this week. It has to be hard, even though I know Sandra and Larry have taken great care of Maya, to be separated from your children.
Will be reading your post to see how Zoe is progressing. You all are in my thoughts and prayers.
Continue to be optimistic as this and your faith will give you the strength and courage to weather this storm!
Love to you all,
Thanks for sharing such thoughtful and beautiful writing, Evan. I’m reminded of a quote that is appropriate for Father’s Day. It was written by Theodore Hesburgh, former president of Notre Dame:
“The most important thing a father can do for his children is to love their mother.”
I know today holds the administration of a tough drug and then Zoe gets the day off before the transplant. Lots of optimism on my end :). Love, Mara
Evan, your gift of optimism will serve you well throughout your life. All the Pruettes lift you, Michelle, Maya and Zoe up for special measures of grace, comfort and healing as this week progresses.
Blessings, Eugenia Pruette
What a beautiful Father’s Day message. All of you are in our thoughts. All the best,
Margaret and Gene
Evan your Father’s Day post was great and I did appreciate being able to read it as I do with all of them. Our continued thoughts and prayers are with you all and a special hug for Michelle from A.J. and U.E.
I know you are glad to have Maya with you now and God’s care will be with Zoe, I’m sure of that.
Love to all of you from N.H.
As the parent of a Histio child I echo your feelings that it is the uncertainty that gets you “stressed”. When I let myself the uncertainty can drive me crazy with worrying about his future. Wondering if he can accept all that he knows about himself changing if the Neuro Degeneration continues. But then I remind myself of our family motto we adopted when Jackson was diagnosed the 2nd time, “we can do hard things” and we can, and you can. For us, seeing Jax do this at age 4 and now again at 14, almost 15 now, we can see that he is a stronger, more empathetic, kinder soul than most boys his age. He doesnt’ take much for granted, and he doesnt’ hesitate to hold our hands, and tell us he loves us. Maybe it’s because we are all going on such a tough journey together, but I’m not complaining these are the good things to appreciate.