Here is one last side note for you to consider:

In light of what you have read, this information has been presented to stimulate new conversations on several levels (personally and with your supporting professionals). I mentioned my focus rested mainly on our medical challenges and it has, however our daily life encompasses so much more. Please remember that you are not alone. Your journey, as is ours, is complicated. Your friends and even some family members may not understand all of the challenges you face.

 Unfortunately, the divorce rate in families with rare disorders is higher in comparison to the national average. My wife and I have faced many challenges and have shared many tears, as well as many joys. All these personal encounters will be respectfully honored between us and our heavenly Father.

 There are many books and sites you may access to locate medical knowledge and acquire emotional support. The challenge will always be in applying the knowledge you find appropriately.  So, is there a source for application?  There is.  And it is called the Bible.  In its pages Jesus states, he will send us one (His Holy Spirit) who will teach us all things. (one reference is John 14:26) Check it out if you will; the Bible offers you a vital relationship of which you will always cherish and one which will never fail you.

            So, read on, have the conversations, let the tears flow when they come and remember the joyful times. We are in this together and when we face the bad times, know that through Faith we will see our loved ones again.