After Holden was diagnosed with Pfeiffer syndrome, I stumbled through the five stages of grief: denial, anger, bargaining, depression and acceptance. A few months ago, I thought I had finally settled permanently into “acceptance” until I had to pick up a prescription for an iron supplement for Holden.
This seems like a simple act, but it sent me spiraling back through the stages of grief because it is actually the first step we are taking to prepare him for his first cranial vault surgery in August.
Holden is taking iron for two reasons: to build up the iron levels in his blood and to maximize his response to a drug called Procrit. Procrit is an injection that stimulates the body to make more red blood cells. The goal is to increase his hemoglobin (the protein inside red blood cells) levels by 10-20% with the Procrit injections. Since cranial vault remodeling typically involves a great deal of blood loss, we want Holden to go into surgery with as much of his own blood as possible in order to minimize or eliminate the need for a blood transfusion.
Since Holden will continue taking the iron every day up until his surgery, our family calendar is marked with at least one related medical task from now until the end of August. Now that the surgery date is written down where we can see it, gone are the days where we could try to ignore the fact that our son is about to face hardships we don’t truly understand.
Each day we tick off on our calendar, my fear increasingly causes me to weave in and out of those now familiar stages of grief. I think, “How will I just sit there idly in a waiting room while my child undergoes skull surgery?”. I think, “What do I tell Everett when we leave him for a week and his brother comes back swollen and bruised?”. I think, “How will it feel to touch and kiss the ear-to-ear scar that is about to be permanently etched into my son’s head?”.
And the hardest thoughts are about what will actually happen to him when they wheel him away from me and into the operating room. Slipping back into “denial” keeps those thoughts at bay for now.
On a happy note, each day also brings with it an advance in Holden’s development. Everyday he is keeping me on my toes with his endless curiosity. He chases me around with toy dinosaurs, scares me by climbing on the furniture, and throws fits when he doesn’t get his way - all typical, exhausting, one year-old behavior.
As I witness Holden hit his milestones, I do spend time in the grief stage of “acceptance.” I don’t want to accept the situation, but I do accept my son. So when I put him to sleep at night, I look at his perfect head and kiss it. I realize the days that I can do this without him having a scar running across it are quickly coming to an end. But, after his surgery, when he has that scar, I will kiss it and love him just the same.