I am a Hopeful Parent.
In January of this year our oldest son, who has multiple and complex neurological and mental health needs, began to deteriorate before our eyes. He was in crisis and we did not know why and we certainly did not know what to do to bring him back. We struggled for many, many months to get him the services and treatment he needed in an attempt to stop the downward spiral and save our family.
One day this past June I found myself sitting in front of a Social Worker at the residential treatment centre my son had been admitted to 200km away from our home. This kind man looked at me at the end of our session and commented "your resiliency is astounding". A sentence meant to be empathetic, for some unknown reason, made me unravel and it suddenly hit me that I had not one ounce of hope left in me. I'm not sure how or when it had happened, perhaps like everything else in my life at the time it just slowly eroded each day until finally there was nothing left.
I then cried for two days straight. I sobbed while I was driving, I had tears rolling down my face as I went through the fast food drive through (those poor people!), I sobbed so hard during my son's case conference that those present began asking me questions that I could answer with a nod or shake of my head because I could not speak. I woke up in the middle of the night with my pillow wet and tears streaming down my face. There was nothing stopping the tears and I was too exhausted to even try.
I felt like I had nothing left to give. For eight years I had poured my heart and soul into this little boy. I loved him so deeply and completely. Now I sat there feeling as though there was no hope. No matter how hard we all worked, no matter how hard we loved him, there was so much we just could not make better. I was terrified for his future and for the future of our family.
After the case conference I drove two hours home, sobbing the entire way. Later that same night we were scheduled to attend an annual general meeting of our local Family Network - a group of families of loved ones with disabilities who offer support, resources and training to other families and the community. I had been looking forward to it and now I dreaded it. I contemplated backing out at the last minute but something deep inside told me to go.
That night my husband and I sat in a room filled with families who were also walking this road with us. Some were many years ahead in their journey, some were just starting out. It didn't matter the specific diagnosis or severity of needs of our loved ones. We all had experienced similar, difficult things in our journies - rejection, pain, fear, exclusion. But all of these people also held onto something else, something I desperately needed. HOPE. They believed in their loved ones, they had hope for the future. They saw the strengths and gifts, not just the diagnosis. There were women there who had given birth to children in a time where no one with a disability was referred to as "special". They were instead thought to be burdens who were better served being signed over to live out their lives in institutions away from the rest of society. These men and women had refused to give up their children and dared to blaze trails. They dared to dream and fought for inclusion and held onto their hope for their children's futures. These people had celebrated their children and their unique strengths and gifts. They held their heads high as they built communities around their children and families. They lobbied governments and changed policies and services. They had faced an uphill battle the entire way and yet there they were that night, celebrating and smiling.
I sat during the speeches and presentations and tears once again began to stream down my face. This time instead of feeling like I was in a deep dark hole of hopelessness I was crying because I was overwhelmed with feelings of joy, love and HOPE. The hope that had been chipped away at slowly over the years was restored in a single night. I knew the families that surrounded us understood our pain and sorrow even though we had not shared our story with them. I knew when I made fleeting eye contact with a woman that the details of my son's story did not matter, she intimately knew my grief, my desperation and my hopelessness. Toward the end of the evening that woman approached me and took my hand, pulling me close to her. She said in a quiet and even voice, "I remember those days I felt hopeless, ready to give up. It's okay to fall down, just make sure you get back up".
I just wanted her and my son and all of you to know that I am back up.
mom2spiritedboys is the mother of two very spirited boys and is now embracing extreme parenting in the trenches after trying to fight it for many years. She is married to a wonderful man who works hard to ignore the state of disrepair of their home and made her the happiest woman on earth when he took over laundry duty in its entirity in September 2009. You can read more from her at her personal blog Spirited Blessings