When I learned that my son, Avery, had a “life-limiting” illness, I felt that I had again failed as a mother. Why? I had previously lost three babies before they even had a chance on this earth, and I was now hearing that the life growing inside me was “more than likely never going to make it.” If he did, the prognosis was very grim. Avery was diagnosed with two very rare brain conditions, schizencephaly and Walker-Warburg syndrome.
Many people think I was given Avery because I am such a “strong, brave, knowledgeable” mother. The truth is that I am the one who was given the gift of a child like Avery. In turn, our family discovered the gift of a team of people who have supported us throughout our time with Avery.
During one of our many hospital stays, I was introduced to the “Butterfly Program.” Things like palliative care were discussed. Not wanting to feel as though I was “giving up,” I didn’t pursue this option for Avery. Several months later, I was again offered this service and it was the best decision I have made – for my son and my family as a whole.
From the initial phone call through today, the program has been a huge resource and comfort to our family. It has brought the most caring, compassionate people into our journey. Our team includes music and art therapists, a social worker, nurses, doctors, and a chaplain. His nurse, Kat, is an extraordinary woman who has always put Avery’s comfort and our wants and needs first. She collaborated with me to give him what we wanted for him – a quality of life, not just a harsh existence. His chaplain, Paul, has prayed and sung with us, and enjoyed simple moments with us, as has the whole team. I truly cannot put into words what our social worker, Suzanne, has given our family. She has walked us through the hardest choices a parent would have to make – funeral plans for a child that you still hold in your arms. Suzanne was by our side helping us pick a spot for my son, something I thought unimaginable. Yet, because of Avery’s team, I have peace in my heart and mind that I am doing what we feel is right for our son.
There is never a moment that I do not have these amazing people there to help, to cry, to laugh, and to support his life, his journey, our journey. To say that this care is a great resource would be a huge understatement. Our team has been a gift of comfort, love, and sometimes the push that we needed to embrace Avery.