"A parent’s love begins at conception. Our love grows at every moment of caretaking. When they leave us, our love is even greater........"
Travis C - In memory of Elsie
Several months ago, I was asked to share a little about Elsie’s journey, my experience with grief, and how I carry on since she has passed. Instantly, I agreed to do it, well aware that the audience would be my friends and fellow caretakers of severely ill children. At the request of the LGDA organization, I decided to wait until I felt I was truly prepared and in a good place to share. After about 4 months, I believe this morning to be a good time.
Today marks 1,311 days since Elsie passed. Some of you may be unfamiliar or have forgotten about her, but she was my little girl born with what was later determined to be Gorham Stout Disease. Her body would produce abnormal lymphatic vessels that would constantly leak throughout her upper body. She began as a 7 to 8 lb baby leaking 1-2 liters of fluid daily; fluid that was filled with vital nutrients necessary for development, growth, and vitality.
Elsie was flown to the Children’s Hospital of Philadelphia in search of her cure. While there, we experienced everything: The numerous near-death experiences; the joys of her triumphs, milestones and special occasions; the countless surgical procedures that induced anxiety but gave great hope for answers and her healing; the heart-warming camaraderie from the hospital staff and fellow parents - feeling their joys and disappointments all the same. It is a lonely and unfortunate club. Though I would never wish that on anyone, though given those circumstances, I am grateful to have to had an association with so many smart and loving individuals. I cannot begin to name them all. I just know I remember so much, some things I wish I never witnessed.
Elsie was amazing. Given the severity of her condition, she was bedridden her entire life, unable to detach from wires and tubes that sustained her. I made the sacrifice to be with her daily, not allowing her to go through this journey alone. As a father, it is our primary mission to love and protect our children. That was firmly embedded within me. There was no other option than to give her my all and more. I didn’t have a single night of good sleep in 4 years. I spent every night putting her to bed, doing her cares, entertaining her, constantly thinking as if I were a medical professional viewing her vitals and trying to find her cure.
Perhaps I lost myself in it. I will never know. Maybe I neglected other people and situations in my life. When under such circumstances, life and other responsibilities continue, but even the small challenges that come with daily living can be so overwhelming when you have a child in intensive care. I focused on making my baby’s life as comfortable and as enjoyable as possible. I advocated hard for her. Though we were blessed to receive care at one of the best places anywhere, there were many times I had to speak up on behalf of my child.
As a father, you see, you hear, and you feel things. I was so in tune with Elsie. There are times when I would wake and feel something was off and advise the team to look into something and my intuition had validity. I was a professional advocate before Elsie, but left the hospital a true expert. I can say that I gave her my all, everything I had. However, I was still unable to fix her, and that eats at me a bit to this day. I understand I did all I could do, but being unsuccessful in the most important battle of my life still doesn’t sit right with me and I don’t think it ever will. That’s just who I am. There are days I question myself, my personal value, my choices, I ask, “God, if you are real, why did you take her from me? Why did I lose everything? What did I do to deserve this?” I am sure some of you, understand your varied circumstances, deal with these questions. Just know you aren’t alone.
My heart goes out to you as you continue to fight your battles with your loved one, neglecting yourselves, other children, and significant other. There isn’t enough time in the day and the pressures of keeping someone alive are unrelenting. It can be difficult to find, but I encourage you to find some grace.
Today marks 1,311 days since I last seen Elsie’s beautiful eyes and Cool-Aid smile. Some question why I fought so hard or why I let her suffer. People can be cruel, but they aren’t and were not my focus. My focus was in the right place - on my child. Perhaps my determination served as a lesson for others how not to give up, even when everyone around you does. I knew that if this very day came, I’d give anything to see her smile again.
Now a few years in the aftermath of that experience, I wish I could tell you things are easier. Overtime, you learn to function again, getting some semblance of normalcy back as life’s responsibilities resume. There is so much about Elsie that is deeply embedded within me. I still see her, feel her, hear her as if we are dancing to music or she is in dire need of my care to relieve her of severe swelling due to the retention of liters of fluid in her tiny body. When you are in tune with and providing such an intensive level of care, their loss is compounding.
Losing a child is in many ways a death as you lose a major part of you. Do not expect it to resolve any time soon. There is a lengthy process for recovery that requires dedication, commitment, and again…Grace. Remember you will have good and bad days. Those bad times and feelings can last a season so try not to beat yourselves lower than you already feel. I speak from experience. The struggle is real and it can be debilitating at times. Depression is not something to be ashamed of. It’ll be difficult to hide and it can kill you. Find it within yourselves to open up with a professional and trusted individuals who have proven to be in your corner. Find a cause and/or new hobbies to honor your loved one and to keep yourselves busy. Become active with the LGDA and the Rare Disease Alliance.
The caretaker experience is a lonely one. You may find that you’ve become very introverted, preferring to be alone rather than around others, even those you love. Do not feel bad. I went from being highly engaging and extroverted to someone who prefers to be alone all the time. Yet, at my core, I’ve always served community. I have found a few opportunities to do so and I found value in that. I’ve also launched the Elsie Soars Foundation (www.elsieSoars.org) in her honor. Soon, my time and energy will be given to building this life’s passion and initiative. I want to leave you with this, “A parent’s love begins at conception. Our love grows at every moment of caretaking. When they leave us, our love is even greater; missing them and trying to prevent the fading of any memory. Now that they are gone, we become caretakers of their legacy. Supporting others can be the elixir to healing.” - me.
Many blessings to each and every one of you and your precious loved one. My heart is with you.
