So, I have been thinking of and sitting with my thoughts and feelings about this sweet little boy Shane Haley; better known to us now as, the “bucket list baby”. For those who have not heard, this beautiful baby boy was diagnosed, while still in his mother’s womb with a very rare and terminal brain disease called Anencephaly: http://www.cdc.gov/ncbddd/birthdefects/anencephaly.html. What made this heartbreaking local story a worldwide one of incredible love, hope, honor, selflessness, respect for life and the duty and responsibility of parenthood, is that Baby Shane’s parents opted to not only carry their son to term, but knowing his brief life-expectancy after birth, they, created a list of things they wanted their son to experience…and did them. Baby Shane, while safely enveloped in his mother’s womb and protected by his father, was taken on a journey of love and wonder that has changed many lives worldwide.
From the moment this story entered my life, I have been shifted; for so many reasons. I remember thinking in that moment how incredibly proud I was of his parents and how much I smiled for their son – as the tears rolled down (as they are doing right now). I remember thinking that God makes no mistakes; that sweet little boy was given the very best parents for him (and for those who scoff at the “God makes no mistakes” part, wondering how I can say that in the face of his disease and death, please trust me; I would never lie to you). Baby Shane was blessed with parents whose love did not stop (and may in fact had grown) when they were advised of his diagnosis and prognosis. They honored him with life, love and memories. They gave their son a story and a legacy.
This story touched my raw spot. For the past week, I have been surrounded by memories and the pain and sadness of my own loss; the loss of my son, Baby Wiltshire-Alabi. A little over two years ago, I miscarried; to this very moment, I still feel and live the loss of my little boy. I still wonder who he would have been and how very differently my/our lives would have enfolded. I cry (as I am doing in this moment) imagining him running around with his father’s smile and my laughter. I do ache at my ‘vision’ of his going to play baby-football with his father.
There is something that has to realign itself when one is told that something has happened to their child; and, when that something is permanent, when it is terminal, the process to realign can manifest itself in so very many ways. Life as we know it takes on a different color; it is never the same from that moment on. Since that day, I have lived such a different reality; my ‘normal’ has been rewritten. Stay with me here and, let’s address this:
While this pain is new, while it is raw – you know that type – absolutely everything that remotely rubs up against it removes the scab and reopens the stitch; spraying blood everywhere – every little movement you take is painted with the brush of this reality. Every breath, every road, every thought, every single decision, and all fucking emotions are tied to the pain and the anger. You hurt because you have lost. You are angry because you have lost. Raw pain. But eventually, hopefully, you get to the place where you (or at least I) are able to lift the elephant off of your chest just enough to breathe without constriction; the pain does not go away, but it rolls back enough to allow for other emotions.
These “other emotions’ are what I would like to leave you with. My baby boy did this for me: because he came to visit for such a very very brief moment in my time, his presence was even more poignant and lasting. Like a rare moon, he illuminated my life with beauty, hope, wonder and magic. His visit solidified in me the unwavering certainty that miracles are possible; he brought hope back to my heart and healed a lifetime of difficult lessons. As I continue to miss and cry for him, I am also now able to honor all that he has left me with – by being the kind of woman a mother to him should be.
Please trust me, out of a broken heart so very many beautiful things can be manifested; just hold on. The reason for the beauty is a simple one – there is no purer emotion than pain; which means, there are few outcomes more honest or heartfelt. In your moments of hurt, allow for the sister-emotion, hope. In those moments of devastation, turn on both the auto-pilot and the GPS – let something else guide you, sit back and trust. Breathe. Cry. Yell. Curse (yall know I am a huge fan of the cursing). And…feel. Feel it all; please. Do not deny yourself that experience. Feel. Please. Feel.
Baby Shane, if you ever get scared, please ask someone for Baby Wiltshire-Alabi – he is a little older than you and has been there a little longer – he will take care of you. Play now, little angels.