the tide and our journey

“The tide rises, the tide falls, the twilight darkens, the curlew calls; . . . . The little waves, with their soft, white hands, efface the footprints in the sands, and the tide rises, the tide falls.” 
Henry Wadsworth Longfellow



We met with Finn's sweet metabolic specialist a few weeks ago, these were her words to us as we talked about all that is going on with Finn, "There are going to be ebbs and flows, you will think you have something fixed or figured out and then it all goes to pot.  There is no winning,  your job is to make sure Finn is taken care of, an has the best life possible.  How you choose to do that is up to you."  Such wise sobering words and so beautifully put.  We will continue on finding that balance for our Sweetness.
  By nature I think like a fixer, I want to know the steps that are going to "cure" my boy, it is maddening to think  that we have "fixed" a problem only to have it reappear in our sweet boy.  Recently life with our sweet boy has tested us in so many ways and pushed us to limits that we didn't know were possible.  We are learning how to parent such a special child.  There isn't a magic potion or dance or diet that is going to change Finn's DNA, and so we are going to learn to live it up during the flows and forge through the ebbs.  We are blessed with an amazing team of friends, nurses, doctors and therapists that have the best interests of our sweet boy at heart, we would be lost on this journey with out them.

There is a lot of medical mumbo jumbo that I could write but it all sums up to our boy is struggling and finding that balance has been and is going to be hard, overwhelming and heartbreaking.  I am clinging to Psalms 89:9 "You rule over the surging sea;  when its waves mount up, You still them."

So we journey on knowing we are not alone.