You can imagine the questions Randy and I are working through as you probably share many of the same. This is why we really need a nurse to come with us and assist us coming home. In the best of scenarios, traveling overseas has its challenges - but now imagine this. Creativity and out of the box thinking is required for certain. Conversations with doctors turn into talks on saran wrap and building a custom foam seat with a hole.
And however awkward it might all be, it's not only debilitating but life threatening for Maxim to continue living like this without any medical intervention. We thank God for preserving his life, but we are pressing in and asking (and I won't lie - crying) for a deep compassion to fall on those who hear his plight and to pray for him. Truly pray for him. It is all we are asking for tonight.
Like your child was lost in the woods and you would scream for people to come help you find them- this is my heart cry right now. It's why it's really hard to answer the question, how is he doing? This is how he is doing. And the fact that he can put a smile on his face does not make THIS any better. Children who live in distress for long periods of time, may get used to living that way, but they DO NOT LIKE IT.
http://www.notdeadyet.org/2011/11/hydrocephalus-spina-bifida-and-medical.html He speaks of a global plague. We know it is not just an attack on spina bifida but on all who are viewed as weaker and costly to human convenience and pleasure.
In Armenia, at the baby house where we adopted Jubilee from, tiny precious babies with heads so large lay crying in pain. The pressure of the fluid continues to build but no shunt means death. I asked the sister why this was happening. She said, not all of the children will receive surgery. But she could not explain why some would and others wouldn't. Jubilee was one of the very blessed ones. We know it is an incredible gift from heaven that Maxim must have a mild case of hydrocephaly as it often accompanies spina bifida of his severe degree.
I love that he smiles and I love that he sees the world with hope. I love that he hasn't given up. That his spirits are high tells me someone is feeding his heart. Someone is speaking to him. Someone is praying.
We are in our last week of fundraising and advocating through Ten for Orphans. For the month of October they have been spreading the word and sharing about our Maxim and Lucia in Ukraine. I am asking that if you are reading this, will you pray for Maxim and Lucia before you leave this screen? Will you leave a comment and let me know? Will you share this link with a friend or bible study group? I am shameless to cry out on their behalf. If after prayer you are led to sow into our adoption of Maxim and Lucia you can go to Ten For Orphans to give.