The Glue that Holds My Heart

  I remember, for the first time in my life, not even being able to shed tears even though it was the deepest sorrow I had ever known.

The heaviness of the news sat on my chest and weighed me down, causing me to retreat back into my own world.

I was sad, confused, angry, and hopeless, but tears rescinded back into my eyes, hiding away. I don’t know if the tears were seeking refuge, because they too, had been tired of being overworked.

In these first moments after diagnosis, I was numb.

I remember crying and saying that at the end of the day, I was her mother, and it was solely my responsibility to be her caretaker. It didn’t matter who else was there, because in the end, it was me who was her mother.

 I remember feeling so burdened by a diagnosis and felt like I was alone. Of course, my husband and extended family would help us in any way, but it felt very isolating during that time. I felt like no one could truly understand a mother’s grief in the way that I was experiencing.

            But, as time went on, the process started, healing began, and the open wound in my chest, slowly closed. I started putting back together the broken pieces of my heart. The glue would hold together the shattered parts- they would never fit together perfectly the same, but they would fit in a different way- perhaps a little messier, perhaps not as sturdy, but it would be repaired in its own way.

            There are times when I experience loneliness or sadness. I wouldn’t be human, or truthful, if I stated otherwise.

            But I found a true army, fighting for Hailey, for me, for my family, in every way possible. A true squad, working together to create a plan for my child.

            I had an idea- I wanted the team behind my daughter to wear shirts on Rare Disease Day.  My sister created them for us- but what I found was that it was overwhelming. The amount of shirts made were in the twenties. Over twenty people representing Hailey as her squad. And that does not account for all of the others fighting in our corner.

The shirts were created for Hailey’s direct front-line team- her teachers and therapists. Seeing pictures all day long on this special occasion, a day designated just for my girl and her friends fighting the good fight- RARE DISEASE DAY- brought up so many emotions and feelings that are indescribable.

It has been three  months since Rare Disease Day and I am simply reflecting on that special time- I think it has finally hit me-  we are so fortunate to have this network.

Each therapist that works with her- it is not just their job- the relationships we have formed with these wonderful people is something unmatched. Besides the amazing work that they do with and for my daughter, they communicate with us, share pictures, share our sorrows, our wins, our losses, and our fight for Hailey. The love that we all share is evident. The teachers that nurture and teach her every single day, care for Hailey as if she is their own. They take time to make sure that she is in an inclusive space- she is taught, loved, and mostly, she is cared for and treated with kindness and respect.

The seclusion I felt in those early days have subsided. They still come out to haunt me every now and then, but when I feel as though I need more support, I know it is there. It is a text, call, picture, or a hug away. And with that, I thank you, Hailey’s therapists and teachers.

This month is Occupational therapist month, but every month, every single day, we celebrate you all- OTs, PTs, SLP’s and beyond.

You may not be related to us by blood, but you are absolutely our family. We are forever grateful for the support you have given us- and the love that has been shared. We thank you, we admire you, and we love you.