Now for the update. My wife Rebecca wrote the following, so I will just share what she wrote:
“A long update on the wonderful world of getting to be Liv's parents - much appreciation for those who invest the time for the lengthy read:
Over the past six months we've been on a journey with Liv's health. She is a wonderful, smart, happy, hearty, healthy kiddo! But something with her vision triggered some concerns and through many many tests over half a year's time, we found out that she has a very rare condition. It's so rare that they have no definitive idea what we should expect. Her vision is impacted and may get worse. And there are a host of other things that might happen. We won't know until and unless they do. In the mean time, they have her on some supplements, they will run a series of annual tests and visit a number of specialists every few months to check in. One concrete thing we do know about her very rare condition is that getting sick is dangerous for her. If she gets a fever, we have to take her to the ER because fevers can go south quickly for kids like Liv. It's best for her to avoid colds. She's by no means a bubble baby, but we do need to be careful. So, if you don't see her around much, that's part of why. She loves putting everything in her mouth and getting really close to people. She's a friendly, huggy, extroverted toddler! And so, especially during cold and flu season, it's best if we give some care and bring her around a little less. Also, if she does get sick, it's important for us to pay close attention. I (Rebecca) am likely to take the day off to monitor her for something as often-dismissed as a bad head cold.
Now, let us be super clear on this one: She is in great health! Aces on all her tests except for vision. We're going to live with the assumption that she will stay in great health...at the same time as we keep up our awareness that there's a chance she may not.
As the parents of a kiddo with a rare condition that might be very mild and could possibly be severe, life sometimes is heavy. There is grieving to do. There is fear to sit with and invite Spirit into. There are doctor appointments and supplements to manage. But! I want you all to know that we have an excellent support system. We have worked hard to pull together spiritual and emotional helps for ourselves so that those we care for can know that we are being cared for as well.
We share all of this with you as Liv's parents. Not Liv. We share so that you know us and our path a little better. Liv's path isn't ours to share. She has a great story ahead of her and we don't know what it will look like or what parts of it she will want to share. I (Rebecca), as an extrovert, am most happy to have conversations with anyone about how I am experiencing being Liv's mom and about any concrete things that can be done to help her thrive. Luke is more of an introvert and may be best supported with presence over words. Other than that, we will probably not be sharing too much about Liv because she's not at an age where she can give us permission.
Rebecca and Luke Sumner”