It is safe to say that most of hemophilia has been unexpected. Even when you are planning for the unexpected you get another unexpected in its place, sort of a Murphy’s Law type deal. And yet, I am always finding things about hemophilia that I never expected from our experience. One of the most profound things about hemophilia I did not expect was the grief I would experience over the loss of my son’s doctors, nurses, and social workers when they retired or moved to other jobs.
These individuals had become family, and some of them knew more than our actual family. We poured out concerns and fears to them in the safety of small hospital and clinic rooms. And in roughly the course of a year, the two people who sat down with us in a NICU room the day he was diagnosed and explained all sort of strange things to us were both gone. One had retired, after countless years of service to the bleeding disorder community, and the other had found a new position somewhere else in the industry. These were the people who saw our first tears and who helped put words to our fears. And honestly, I remember very little about that first meeting, partly because less than an hour later we were dealing with a massive brain bleed, but partly because I knew these people would be there along with us. Although I miss these two from time to time, others who are competent beyond measure surround us and I trust them with my child’s life.
Our social worker told us quietly one day in the hospital, while we were dealing with a hip bleed, that she had taken another position that would allow her more flexibility with her family. I was so happy for her. We love her and want the best for her and her family, but I struggled profoundly when she left. She had spent hours in the NICU with me in that first month. I had confided fears and hopes. She helped us navigate our employer-based insurance. She was a sounding board when I was angry and she gave me confidence to speak up when we were unsure about a new care plan. I still remember her words ringing through the phone, “you can say no.” It was not even a matter of saying ‘no’ but more about making sure we knew we could speak up when we felt uncomfortable.
My husband may have thought I was crazy when I was almost in tears over her leaving. How could I come to trust someone again in that role? She had been there from the very beginning. Right now, only time with tell. We have a new social worker and she is beyond capable, but I find myself keeping things close to the chest. I do not know how to trust someone in this role again. It is such a vulnerable place to find yourself, telling someone you barely know personal details from medical history to financial security.
We have very limited opportunities to say goodbye when our providers move on and to show our appreciation. There are no big ceremonies; it isn’t like the end of the school year and saying goodbye to your child’s teachers. These doctors, nurses, and social workers give us their all and then fade into the background as they move to different positions or into retirement.
And even though we try to say thank you as much as we can in between tears and fears and celebrations, I would just like to say, thank you for your service to my family. Thank you for walking along us during some of the most difficult times in our lives.
We are beyond grateful for the time they spent caring for our son and for us. And no amount of Christmas candy could ever adequately be enough to tell you how sweet you are to us.
Emily, her husband, Geoff, 6-year-old son, Logan, 3-year-son, Ryan, and infant daughter, Payton, live in Minnesota.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.