June went on hospice a year ago on Saturday, January 21, and I’ve been struggling more than I thought I would. This may not come as a surprise to others, but it did to me. I was anticipating her death anniversary as a difficult day, but I wasn’t expecting the hospice anniversary to sting so badly. It makes sense. That is when we realized June’s death was imminent. It’s when the hard part began. For two weeks, we held June as her body began to let go while every instinct in ours was shouting to hold on. In that instance, we learned what it truly meant to put our child’s needs before our own.

During most of June’s life, I kept a journal filled with medicine and seizures logs, questions to ask her doctors and therapists, and it’s sprinkled with my thoughts and feelings on the daily struggle and joys of caring for a medically complex child. I wrote something down about our experience on nearly every day of the 1,376 days of June’s life. Last week I finally mustered up the courage to read through parts of the journals. I found wisdom in myself from a year ago communicating to me now. Ten days before June went on hospice I wrote:

“We are doing things with George we’ve always wanted to do/experience with June. It makes me so happy.  I am also so scared…scared that June is going to die. When will she be taken from us? Whenever I start to go down this path, I simply try to think of something else, but it’s always there. The point is – and what I need to focus on – is right now, in this very moment, life is good. George is healthy and happy, June is comfortable in her crib, Matt is next to me sleeping, and I am in a good place. I love my husband and my kids. I have everything I ever wanted. I just want to take a moment to appreciate all the gifts I do have. 

The other thing I thought about today is how I am June’s mother, but she has taught me more than I will ever teach her. In fact, I don’t think I’ve taught her anything. I’ve loved her and cared for her, but all the teaching has been on her end. She’s taught me about smiling through the suffering, about love, acceptance, patience, perseverance, and humor. I will never know why some children face such grave circumstances, but I believe we can make meaning of these situations because they will change us for the better if we let them. Every day I try to cherish June because I never know if it will be my last with her. She is my angel here on earth, and I believe when she dies she will still be with me. As long as I am living, she will always be my baby, and I know our love can transcend..her love for me will find me here, and my love for her can reach her all the way to heaven.”

The last few months I have been kicking myself for not enjoying June enough while she was alive because of my concerns for her healthcare needs, and here is beautiful proof that I did cherish and appreciate her while she was here. Often we are so much harder on ourselves in the reflection of life events than what is necessary.

Life is so messy, and it’s easy to be fearful of the bad things that could happen, and – for some of us, will unfortunately occur. However, reading what I wrote during a scary time in my life was an important reminder to myself to focus on the present. Just one of the many, many beautiful gifts June gave me.