If I was asked to think of a simple phrase to describe the people I hold dearest to my heart...I could...for each and every one of my humans I could summarize what they mean to me in a brief sentence. But there's one...there's one human in my life whom I think so highly of yet barely know whom a day doesn't pass that they're not in my thoughts yet I can count how many times we've spoken...and for her I don't have a sentence. I have a string of words that defines her existence...at least to me. A string of words she has typed so many times that it is as much of her signature as her first name. I guarantee you in her close circles there is more to her but for me...and my guess is many others in the SCID community when the name Heather Smith is spoken or read the description that screams clear and true is...and means so much more beyond the written depiction is ^Brandon forever 7 months^
It's not a sentence, not a description of her character, there are no adjectives...but for those of us who know what those upward triangles mean it embodies every inch of her being.
Those 3 words and 1 number means she is a mother that lost a child. A mother that lost a child named Brandon. And he was and will forever be 7 months.
She's not alone...there are countless mothers who have lost children. Any one of you reading this may have, or may have come close or may in the future. I don't say that to be grim. I say that because the only certainty in life is death. The uncertainty is what you do with it when it touches you. Few do what Heather has. What Heather has done...the life she has led since her little boy has passed will continue to baffle me for the rest of my days. She has devoted so much time, so much energy, so much power, so much strength to a community that once had no hope but now because of HER...because of her determination, because of her relentless insistence, because of her super human compassion our children have hope. Did she do it alone? No. No one does anything alone. The greatest movements and triumphs are always backed by others...some outspoken and some silent. Some who do a little, some who do a lot and many who do as much as they're capable. There is no shame in any of those categories but Heather fits in none of them. Heather is a warrior. A warrior for a cause that those who've followed in her footsteps are lucky she was touched by. Because of her involvement, because of her life's tragedy, because of her unspeakable loss every single baby who is screened for SCID stands a chance.
There are days when I sit back and stare in awe at Riley...not because of her strength (which we all know there is no shortage of) but because of the humans who came before her whom she may never even know that made her life possible. Brandon was not the only child to have succumbed to SCID...there are many others. But Brandon's short life was held so dear to his mother that she's now spent hers giving us a chance at what he didn't have. A warning. An early diagnosis. A life. She may have dug a hole of grief and anger and resentment...hell she may have resided in it for quite some time and understandingly so but she came out, she came out fighting and she has not stopped. My daughter is alive partially because of a little boy that died 20 years ago on the other side of the country. And she's not alone. There are countless others who live because he didn't.
SCID is rare, yes. But for those of us it's touched it is reality and then suddenly there is nothing rare about the life you live. It becomes yours immediately, the moment you hear the words you can't pronounce your existence has changed. It's all you can do to get through it. To function. To keep going. Heather did all of that for a son she lost and then she did it again for her son Taylor also born with SCID but a survivor now in college.
She didn't just fight for her boys but for every one of or children. Our options, our hope, our future is owed in great measure to Heather Smith.