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In Honor of Lila Claire

When you have a child with this diagnosis you are pushed overboard into an ocean that wants to swallow you whole while you desperately try to manage the unforgiving sea.  You and your baby are both new swimmers trying to survive by treading water. It takes all the energy you have and at times you aren’t sure how much fight you have in you, however, you push through because your child is relying on you.  A life raft appears and you muster up the strength to grab hold of it. You begin to roll the paddles and start to make gains.  You quickly learn to deal with the choppy waters, the hot piercing sun, hunger, and exhaustion.  Then a funny thing happens; you start to notice other people. You begin to realize even though each of you are in the same ocean, everyone’s life raft looks different.  Some have life vests, while others are still treading water. As you encounter others, you recognize that some of the rafts are newer, but other rafts are tattered-showing signs that their journey has

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