Monday, 11 February 2013
This weekend has proven to be a continuation of an emotional and physical roller coaster. So many ups and downs. So many worries that we can't even begin to wrap our head around. So many doubts. So many....
It's became apparent in our situation that NO-ONE knows what the future holds for us. People that have been in the palliative care field for years don't know the path that we will walk. The only thing our dear palliative care nurse practitioner did say is that she's 'worried Jacob won't rebound.' Enough said!! So tossed with tempest!! We LOVE our boy beyond what words will ever be able to express. We are tired of watching him suffer, many times praying 'Lord, take him Home.' Take him to that place filled with heavenly mansions. A place where he will have perfect vision, a place where he will breathe in perfection, a place where his hearing will be accurate, a place where he will have full understanding and a place where his body will be whole. Truly beautiful. Yet.... how can we part with our own flesh and blood. At 22 months, he's still so young. Yet... in God's timing his life will be complete. It feels like we've just begun to know him (notice I didn't say begun to figure him out, because we don't feel like we've ever really figured out Mr. Sometimes.)
Tomorrow the palliative care team from London are coming for a home visit. Hopefully this will clarify some questions. We know enough of their thoughts, when they tell us they are going to supply us with a 'symptom management kit.' They want us to be prepared to deal with the road ahead. From now on, we are to treat the symptoms. Clearly, this is a scary road to be travelling. One I had never even dreamt of prior to having Jacob.
This morning was indeed trying. I called our case manager this morning, who has ALWAYS had a listening ear. I wanted direction from her. I wanted her reassurance. After some time, I got hold of her, just to hear her sounding more than slightly under the weather!! After a short conversation, she informed me that her father had suddenly passed away, and she would be taking a leave of absence. Wow. My sounding board was gone. Then I realized that God wants Him to be our 'sounding board.' He wants us to go to Him with all our cares, worries, concerns, apprehensions and fears. Even if we can't utter a word, He knows the heart. He is the one who we should be seeking direction from. He has the perfect 'listening ear.' I have so much to learn.