Today I read two really special somethings written by mothers who have children with special needs. One from a friend and one from a stranger. They both touched my heart. The first was an opinion piece from the NY Times, written around this time last year. It's called Notes from a Dragon Mom. Emily Rapp talks about how her expectations for her child are completely different from most parents. She knows her son, Ronan, will most likely die by the time he's three because of Tay-Sachs Disease. So much of what we think about parenting has to do with the future, and her child doesn't have one. There's no phase he'll outgrow or a part she wishes she could fast forward through. She talks about how many decisions (like organic food or cloth vs. disposable diapers) don't matter to her little family. I love the wisdom she ends with:
Parenting, I've come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that's all there is. 
 The second was a letter written by my friend, Ryan, to her daughter who just turned one. Lucy was born with NKH. She has three older siblings, two brothers and a sister. Her sister also has NKH. I was thinking about Ryan when I read Notes from a Dragon Mom. She shares her journey as a mother so honestly. Often times, she talks about her relationship with God. I learn much about myself and the kind of person I want to be when I read her words. What we face in our every days as mothers is not at all the same. I don't have nurses and frequent unexpected hospital visits, I don't have four children and have to balance the special needs of two who have a rare disease and two who just need a sense of routine and normalcy. I didn't know before my children were born that they would struggle for their lives, I didn't think that I might never get to see them open their eyes or hear them cry. In her letter, she tells Lucy she is a light in her heart, one who is bringing her closer to the Father.

Some of my most sincere, connected prayers in the last few years have been for Ryan and her family. In a way, Lucy and her siblings and parents are a light in my heart too. I pray for miracles for them. And because of Ryan's openness, I've been able to see miracles happen. I've been able to see humanity elevated in the way friends and family step in to meet the needs of this one family. I've been able to see how a parents just like Jake and me, have shifted their expectations and dreams, and how they love their daughters and care for them, and how they help them live with maximum dignity.

I hope that whoever I meet, and whatever needs they might have, I will be able to help care for them with the same loving kindness I'm continually learning about from mothers like the ones who have taught me so much today.

1 comment:

  1. sweet blog! go tjek out mine and plizz follow! then i will get very happy!




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