I find it hard to breathe when I imagine my world without my beautiful little boy. For almost 7 years, we have cared for him, helped him to grow, and have loved him fiercely. We fought to share the same experiences that all parents wish to share with their children…we packed up our emergency bags, oxygen tubing, suction machine and wheelchair and set out to the zoo, the family events, and the park…trying to hide what was behind our smiles. Mixed with the joy and intense love we drenched our son in, were the feelings of utter exhaustion, the twinges of fear,and the depth of grief that we have carried through our son’s whole life.
When Isaac was born, his life was filled with hope and a whole lot of “normal.” Just 10 days later, everything changed. With a 104 fever, Isaac’s family brought him to the emergency room. And two weeks later, after it was determined that Isaac’s brain had been catastrophically and irreversibly damaged by an infection that had attached his brain. His first family did not feel they could care for him… they could not imagine life with a child how often screamed for hours at a time. When Isaac turned one year old, we adopted him and committed our lives to provide the best care we could for our precious son. We did not know how difficult it would be, nor did we imagine the depth of love and commitment we would have for this amazing little guy. We had no idea how blessed we would feel to have been given the chance to walk alongside our son… all the way home.
Isaac is dying. We just know it. We have become so in tune to very subtle changes in his condition. We know him with a depth that can not be explained by words. We have our own communication that others will never understand… it’s our secret language and it filled with joy and with pain. It appears that his brain can no longer manage this body that it is in charge of running. He is no longer tolerating his tube feedings. His bouts with pain and distress are more frequent. The seizures that have developed are taking their toll. Our precious, beautiful, wonderful son is dying. I fear that my heart will break into so many pieces that I will not be able to pick up the pieces to create anything out of its rubble.
We need help. Our other children need help. My husband and I want to have enough left to give that we can support them as they grieve as well. But we are spread so thin. Each member of our family has their own unique needs in this journey and we so want to be in touch with their needs, but frankly all I want to do his hold my baby… my Isaac. I want every moment I can have with him to be filled with snuggles, and smiles and stories shared between us. But, life must go on… and I must live it. I must make dinner, and help create science fair projects, and keep up on my work so that we don’t drown financially. Sometimes we feel like our world is spinning out of control… and we just want to scream… “STOP and let me off!!!!” We just want everything else to stop and allow our family to come together and cherish the moments we have. Once Isaac is gone, our family will never be complete again…our family pictures will always be bittersweet.
We want to live with no regrets. We want to celebrate the life of Isaac while is here. Families like ours need support. We need the services that a specialty Children’s hospice and palliative care center can give us. We need Crescent Cove and its services. We need them now. We need to know how to help our other children move through this process of grief in the healthiest way possible. We need a place that understands the unique needs of children and their families. And as parents, We need someone to hear us when we have no words to express the sorrow that we hold within our hearts. We need Crescent Cove. And we need people like you help make this happen. For Isaac… and so many others like him.
In loving memory of Isaac who died peacefully in his parents arms November 22, 2015.