This will be the 7th year that I’ve written a blog about Christmas without Sean. I’m not sure how I’ve portrayed my feelings before; though, I know that I’ve tried to be positive. Nothing is worse than a downer during the holidays. Thing is, Christmas, like every other day can be a challenge for the person without a mental illness; for someone struggling with bipolar disorder, it might be too difficult to handle. As Sean’s struggles escalated, his ability to enjoy the holidays diminished. He would request that only family be there (I would be happy to include anyone without a better place to be). His issue was his being able to be social, asking: “Mom, was I nice enough?” Sean was always aware of his social anxiety and wanted to be seen as appropriate as anyone else. By his last Christmas, he told me he wasn’t up for it, but managed to join the family for a short time in the afternoon. This is the truth about someone who has a depressive or anxiety related illness. Try as they might, sometimes, they just can’t rise above it. The pressure of the holidays: buying gifts, being social, looking happy, is just too much when added to what they deal with every day. The families do not go unscathed. We all want to enjoy a day of ‘joy.’ Images of gaily wrapped presents, plates of homemade cookies and a room full of family around a crackling fire… a Hallmark card day. However, when a child or spouse is struggling, there is an undertone of worry and disappointment. We don’t really understand what the problem is, nor can we fix it. We just try to work around it. I think this is just a snapshot of what every day is when you care for a person with bipolar disorder. You don’t know what to do, you want to fix it but can’t, and you learn to dance around it, hoping for a good day. Losing a loved one leaves you with that same dilemma. Why are they gone? What could I have done better? How do I live with this pain, and how can I learn to live next to it, being ‘nice enough. Such was my last Christmas with Sean. I say all of this today, not to put a pall on your holiday, but to share the truth. There is nothing glorious about having bipolar disorder. It is a daily struggle. Some are lucky enough to find a practitioner that is knowledgeable and compassionate, and they find the balance of medication and therapy that works for them. Often, this has taken years, and too often, there is no such person for them. This was the catalyst for the Fund. Sean never found that person, and in the end, the program he went to begging for help, let him down; in fact, according to one expert, put his life in jeopardy. I lost my son due to lack of information about how to treat a person with bipolar disorder who is also an addict. The sad, sad thing is that I am only one of too many who are facing this holiday missing that one stocking on the mantle; that one special gift; that one, joyous laugh. Six plus years into working tirelessly for the fund, we’ve been able to accomplish some amazing things: the donation to Right Turn, ground breaking research, multiple benefits/educational opportunities, Treatment in Tune, just to name a few. There is still so much more to be done, however. We haven’t been able to raise the funds for the research I had hoped for, and grant monies are just not there. Seems unbelievable given the fundraising campaigns we’ve sponsored and the fact that we are an all-volunteer organization, and that our family has donated all proceeds from sale of Sean’s CDs to the Fund; however, research requires major funding. We are lucky in that we have no office rental, no administrative staff, no professional fundraiser, and, obviously, no expert newsletter writer! Our website and social media are handled by amazing volunteers. The Fund has considerable competition for donations, as there are just so many people asking you for help. We are just one in a crowd and nowhere near as engaging as a puppy (even I am moved by the sad face of a little puppy, or the pleading face of an adorable child). We represent the common face of your father, your brother, your sister, your spouse. Almost 3 out of 100 people will be on the bipolar spectrum; if you are in a room with creative people, you will be one of the 30 out of that 100. It’s an incidence with enormous social and financial impact; yet, you will not be at the top of the list of charities with the highest donations. Sean’s legacy has had an amazing year this year…. Georgia Music Hall of Fame, AJC spread (though I was disappointed that it did not represent Sean as a person; rather, Sean, a musician with an addiction) and the release of ‘Sean in the Magic Shop.’ The accolades of the latter have been nothing short of amazing; however, they leave me feeling rather empty. What good are they if Sean is not here to enjoy them? It is his passion, talent and determination… the charisma of his soul… that reaped these honors. I accept them, but do not own them. How much sweeter would it be for all of us if Sean were here to show his excitement and share it with us? Imagine what he had left to give. I must confess that I told my sister that the award meant nothing to me. Perhaps it was my comeuppance that it was taken and has yet to be found. It obviously does me something to me. I am devastated at its loss and will replace it; however, like Sean, the original is the one with the meaning. In this season of giving, it is often hard to receive with grace. I can balance my feelings of loss of my son with the realization that his being has showered me with many unexpected gifts. Sean touched others with something special and that magic continues today, through the charity of others who volunteer, donate and write to the fund. The emails I directed to the fund give me the blessing of knowing that Sean is still here with people other than me. Some have known him; others, have discovered his music; still others just want to connect. It is this last group of people who have become the dearest to me. In them, I witness Sean’s beauty and vulnerability. With them, I have a chance to extend an understanding hand. Through them, I feel hope. This year, we have the blessing of the story of Amy. I’ve never met Amy in person, but I feel that she is my friend. I can’t wait to meet her. The warmth and beauty of her personality permeate her emails to me. Luckily for me, I’ve been privileged to accompany her (virtually) through some very difficult times to a point where there is light in her world. In this season of Christmas and Hanukkah, two celebrations with light as their center, Amy shares with us her own personal gift and gives witness to the light in the soul of a person who happens to have a disease called bipolar disorder. My family and the Board of the Sean Costello Memorial Fund wish you and your family a season of light. May your stresses be few and your joys many. In your prayers, remember those who cannot see the light quite as brightly as you and wish for them a brighter New Year. If there is room in your heart, please consider a way to help us help them. With Warm Wishes this Holiday Season,[signature color="black"]Debbie aka Sean and Bridget’s Mom[/signature]