Keep looking for answers, keep asking questions and keep sharing what you have learned. It truly takes a village to raise a child with a medically fragile and complicated condition, whether diagnosed or undiagnosed. You are now part of a world few get to see filled with children, parents, siblings, friends and family, doctors, nurses, technologists and many other care givers and hospital staff that make up this very special community.

You will discover a world with unimaginable joys with every small step forward and support and a shoulder to lean on during inevitable setbacks. Remember, there is beauty and love even in the middle of the storm. Believe it even if everyone else can’t see it.

Feel free to share triumphs, disappointments, advice and resources.