an unexpected village

Three months ago yesterday was the day our lives changed forever. I remember the night we came to this hospital. I came in with Caemon on the ambulance, and when we got off of the elevator and turned a corner, I saw a sign reading “Children’s Oncology and Bone Marrow Transplant Unit.” I froze. This wasn’t for us. Even as we made our way to our room, met the on-call oncology fellow, and began to process that our son did, indeed, have leukemia, I couldn’t claim this place or these people. I didn’t know them, and in my terrified mind, they couldn’t possibly know my son if they thought he had cancer.

If I could give myself–that scared mom who couldn’t stop shaking–a bit of comfort, I would say, Look around at the doctors and nurses. Take a good look. These people are going to fall in love with your son.

I imagine at the time that would have provided little comfort. I didn’t want a place like this to be familiar, to know what it was like to live in a children’s hospital or for my son to know hospital life or cancer life at all. In those early stages of learning a child has a life-threatening illness, all one wants to do is flee. Knowing now, though, what a special community we have here, I am actually grateful to be here. Of course I would give anything for my boy to be healthy, but if he has to be sick, I’m glad he’s sick here.

Before Caemon was diagnosed with leukemia, he lived in a fairly small world. He had just embarked on preschool, and we were so looking forward to the opportunity for external help in raising our boy. We had the help of Grandma and Grandpa when they were able to come to us or us to them, but as parents, we were learning we needed to broaden Caemon’s exposure, to find ourselves that proverbial village to help us raise our son. I don’t think we ever imagined we would find it in a hospital, and certainly not under these circumstances, but as the months have unfolded, we find ourselves every day surrounded by people who are not only taking care of our son’s medical needs, but are nurturing him and shaping him as well. It is remarkable to watch.

Just yesterday, his child life specialist came in to spend time with him. She chatted with Caemon, tickled him a bit, got him to think about eating, and as she looked at him, I thought, She loves him. The day prior, when the social worker came to check in with us, she and Caemon immediately began repeating a favorite line from one of his Dr. Seuss books, and they made crazy banging sounds as they did it. They were completely absorbed in their funny antics, this private joke the two of them share, and then they sat down to read a book together as though I wasn’t there. Again I thought, She loves him. And my boy loves these people right back. Knowing this, knowing that other people see what a special boy he is is good salve to a mom whose heart breaks every day knowing what her child is enduring. In the hands of these people, I cannot say he is suffering. In fact, I can say that in many ways, because of their love, he is thriving. 

Daily, the providers who tend to Caemon’s needs take their care so much beyond vitals and medications, and procedures. They bring their hearts here, and when they leave, they take these kids with them. We received a message this week from one of Caemon’s favorite nurses while she was traveling with her family in Ireland because she was thinking of our boy. A patient care assistant brought in Christmas lights after Caemon told her he was afraid of the shadows at night. Another nurse stepped in to help us redefine some boundaries with Caemon’s excitement for medical supplies and in the process taught him how to give back to others. They teach him to be kind to his moms, to be polite, to make decisions, to navigate disappointments. They help him through rough moments, and they celebrate every little victory, from taking his first pill to making it through a scary procedure. And through all of this, Caemon has gained role models: nurturing, gentle, funny, brilliant souls–both male and female–who are the only types of superheroes Caemon knows.

It is hard to believe a place like this can start to feel like home, that the people can feel like family. Three months ago, I never would have imagined that Caemon’s oncologist, one of the leading experts in the world on Caemon’s illness, would be bringing him chocolates from England and working with him on potty training or talking politics with us. I never imagined nurses would come in, even after their shifts were over, to hang out with my boy, or that they would compete to be the one who takes care of him. But this is what we experience here on a daily basis from everyone who works here, from the patient care assistants who take time to make crafts or read with Caemon, to the nurses who involve him in every aspect of his care, to the doctors who have so much pride when they see him taking such interest in medicine. It really is no wonder he wants to emulate these people and do what they do. These people are made of special stuff–the sort of ingredients that make angels and fairy godmothers and Mary Poppins and Albert Einstein who they are. They are equal parts brilliant and compassionate, creative and  competent, and somehow, amid all of this bad luck, we get these people to help us raise our son.

Today, we’re missing celebrating Thanksgiving with our family, and while it is hard that we won’t be seeing Caemon run around with his cousins, or that we won’t be sitting in the warmth of the people who know us and love us best, we are not without family here. Here, behind that Children’s Oncology sign, there is a whole lot of love, and for that we are very, very fortunate.

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9 thoughts on “an unexpected village

  1. B Mama

    I love this post, and have bookmarked it to read again. Today I am thankful for the incredible team who has become your family, and for the fact that they love Caemon.

    Reply
  2. Roni

    Sister,

    As I sit here reading this with tears running down my face, I am so happy you, Jodi and Caemon have that support system there. They are all so amazing! Celebrating the holidays seems incomplete without your beautiful family here with us. We’ll miss you today. Can’t wait to see you tomorrow. Happy Thanksgiving! Love you all!

    Love, Roni

    Reply
  3. Carol Allison

    My heart is so full as I read this. I have been lucky enough to meet most of the superheroes of whom you speak, and see them in action – just a peek into your day to day life, but enough to know how beautifully you have captured their love and energy and generosity. Yes, they truly do love Caemon, and how could you have imagined all this on that first terrifying night? Gifts come in such unexpected packages and places. And your gift, this gift of writing and of being able to see what is unfolding and to share it with us – it is a gift for which I am so grateful. Love to you all, Carol

    Reply
  4. shroomie

    <> thank you for helping me to remember what is really important today. and every day. Even in the toughest of moments you are finding grace and beauty. It is awe inspiring and heart warming. Much love to you and your family today.

    Reply
  5. Helen

    I am so thrilled that you all have the caring and support of the wonderful staff at the hospital…it truly does make this difficult time so much easier. I know that Caemon is very much loved by those who are fortunate enough to meet and get to know him. He is such a special little boy. He also has people who don’t know him, and have not met him, but who care so much about him (and his mommies). Thank you for sharing your beautiful boy with us, we are on this journey with you, and pulling for Caemon every step of the way! The photos are just beautiful, you can see how the staff love him (How can one not fall in love? I wish I could scoop little Caemon up and give him a big hug…he is clearly so full of personality and way too adorable). You are doing a great job as mommies to your boy!

    Reply

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