No one has a child expecting to only have them for a few years and then lose them. This is not normal.
And yet, that is where we potentially are, defying the natural order of the way things should be according to God’s plan.
We are stuck in a waiting game: waiting for a miracle that may not come; waiting (and dreading) for her to pass; waiting for the disease to progress (while hoping for improvement with every test); waiting to see the purpose of it all. Waiting.
Waiting is terribly difficult no matter the circumstances; but, in the case of families like us, this waiting is the worst possible kind.
We are told the average life expectancy and live each day aware of the potential remaining months of our child’s life, but also knowing that some exceed that expectancy.
We make long term plans knowing that we might have to break them; or, we hesitate to plan anything more than two weeks out because we just don’t know. We wait.
We don’t know what tomorrow holds – no one does. But, our circumstances seem different than most. We know that a tomorrow looms ominously ahead where, without a miracle, our Tori will leave us far too soon. We don’t know what that will look like, but we have an idea because of those who have passed before.
It is a struggle between wanting to keep her here every possible second, but also wanting her to be free from Krabbe and to join Jesus in Heaven as soon as possible so that she doesn’t suffer any longer.
This isn’t what parenthood should be about.
However, that doesn’t keep us from living in the moment and loving Tori fiercely and passionately today. That doesn’t keep us home, afraid to leave the house.
Rather, this has inspired us to fill her life with normal experiences that we would do with a healthy, typically developing child. To truly LIVE life with her by our side.
Having a list of experiences to accomplish has filled our hearts with such joy and excitement. We are truly having an amazing time fulfilling each item on the list and creating memories.
If God heals her in Heaven, we will cherish these memories with her for the rest of our lives. And if God heals her on earth, we’ve simply got a head start on a lifetime of adventures and experiences to enjoy together.
Unexpected circumstances can derail us or they can push us forward – it’s a decision we have to make, daily.
And we choose to live.