Blog created & maintained by Brayden Alexander Global Foundation for Hydranencephaly, Inc. which does business as Global Hydranencephaly Foundation; a registered 501c3 nonprofit organization supporting families across the globe who have been given a diagnosis of hydranencephaly.
Monday, April 7, 2014
Bee-ography: Loving Angelia
I recently stumbled upon this blog post by Holly, originally published nearly a year ago on April 8, 2013. Thanks goes to this mommy for sharing her precious girl with the world by means of her blog:Holly in the Home
Have you ever wondered why any mother would voluntarily choose to get her heart broken?
I’m sure every mother knows what it’s like to check on a sleeping baby, just to make sure they’re still breathing.
I’m also pretty sure every mother knows what it’s like to have her heart skip a beat when she wonders for just an instant what life would be like if she lost that precious child.
Some mothers – far too many of them – DO know the devastating grief of burying a child. They have lived through long, anguished nights wondering “Why me?!” and “If only….” Only those mothers who have walked that path know the soul-crushing pain that leaves you breathless and drained – as if you had run a marathon uphill, in the rain, with no preparation.
So why would any mother voluntarily choose to adopt a child she knows will die? Why would she put herself through that kind of pain? Is she crazy? Is she a saint? Would you believe me if I told you the answer was neither craziness nor sainthood but simply love?
At least it was for me.
In the early summer of 2007, my husband and I had a full house – 13 kids at home, to be exact. With 4 by birth and then 19 by adoption, you could say we had our hands full. Not all 23 lived with us – 3 were stuck in Africa waiting for US visas that have never come, several were grown and gone and 2 of our daughters had passed away.
In the middle of June, I got an email forwarded from a forward, desperately seeking a family for a little girl who had just been born. This baby was missing most of her brain and would be severely disabled all of her short life – and she needed a family.
My heart leapt at that email and I knew that sweet baby was meant to be my daughter. Every child deserves to be loved and cherished and I knew we could offer this baby a lifetime of love.
As a family, we decided we wanted her to join us and when she was 9 days old, she came home from the hospital, straight into our hearts.. Because of her diagnosis of hydranencephaly – meaning she had fluid where most of her brain was supposed to be – and her prognosis of a very short life, where 50% of the kids with hydranencephaly never even see their first birthday, we made a conscious effort to treasure every moment we had with her.
We named her Angelia for the sweet angel that she was. She couldn’t sit up or roll over – or even hold her head up, but she could be held and loved and – so she was! That sweet baby was held almost every second she was awake. I typed many a blog post with her on my lap and when all the other kids were at school, the two of us would laugh and giggle and sing – and even twirl around the living room. And pink – there was lots and lots of pink – pink ruffles, pink bows, pink fingernails, pink toes….
I knew there would be a coming day of sorrow, but I did not guard my heart or hold back in loving her. In fact, I opened my heart as wide as I could. I poured myself into her. I cherished her. I adored her – and I wanted her to know it. She was blind and could never see my face, but she felt it every day as I held her close to me. I touched her and talked to her, held her and even sang to her for hours – even though that’s not something I’m particularly talented in.
When she was 3 ½, she left us on a cold February morning. My heart broke into a million pieces, as I knew it would.
It remains one of the hardest losses I have ever experienced. The tenderness has lingered longer and the tears still come regularly – and yet I have never, ever, regretted adopting our sweet Angelia.
We all do hard things because the trade-offs are worth it.
Some people train for – and complete – marathons, trading sore muscles, blisters, fatigue, running in bad weather and hours of precious time because it’s worth it. Virtuosos trade years of their lives to become experts in their craft. Young married couples sacrifice time and money now as they work 2 jobs to pay for school so that later, their family is provided for in a comfortable manner. For me, loving Angelia was worth the trade-off in grief.
Every long, lonely night, every tear-stained pillow, every bout of empty, aching arms that long to hold her, EVERY MOMENT of sorrow is STILL worth the trade-off in the joy and love she brought to our home, the joy and love that came to me as her mama and the joy and love I believe she felt during her life with us.
I would do it all again – in a heartbeat. Not because I’m crazy or a Saint or have some special talent.