I had a phone conversation today and an email that enouraged me.
The phone call - I cried as I talked to a lady in TN in the USA (Lady A) and told her of the journey of the last days of Elijahs' life and of my passion for sharing and caring for other families with Angelman Syndrome. The reason I rang her was my chatting in the Angelman Forum chat room with a mum who lived in TN USA (Lady B)w hose recently diagnosed daughter has started haing seizures - atonic (drop seizures) and had had lots, I along with another mum encouraged her to go to the ER because of the numbers of seizures. Turns out after five hours and no cessation of the seizures they sent her home with an appointment for the neuro. When I learned this I was angry and felt compelled to help her so I looked up a state contact for the Foundation in the US (Lady A) and have been able to put her in contact with the lady(Lady B) I had been chatting to. The lady who was the contact encouraged me and really blessed me telling me that the Lord had placed me in the chat room at the right time to connect with this lady. The last thing I felt like was that Lady B was going to be facing some of the same stuff we did when Elijah frist had seizures. Turns out in the course of the converation that Lady A has also done research on seizures and meds of children with Angelman Syndrome and she was the right person to call.
Tech nology has helped creat a global village. The short email which in fact was generated by a recent comment here on the blog reads - "I so appreciate the frankness that you use in speaking about Elijah and the blessing that he was and continues to be in your life. I have loved viewing the videos on youtube of your beautiful son and the testimony that you shared. The Lord is using you and Elijah in mighty ways! I've thought of you all often and continue to pray for you."
The time around Elijah's going to the Lord was so very painful that I thought I would you know write a final entry in this blog and let it be it, and yet I was encouraged by a close and dear friend, to keep on writing and sharing the journey, that it might be a testament to Elijah, a testament of the journey, the journey of pain and suffering and loss that these writing of mine might be an encouragement, and inspiration and hope for others, but also to chronicle the ongoing legacy of Elijah Michael James as he inspires me, and inspired by him and by the Lord to reach out and to share hope and peace.
Update on Matthew - please see previous posts.
Matthew had continued this week to have a high temperature and seizures and the team in the hospital are trying different medications to break the seizures which now have not abated for some days - his mum has asked for more prayers and so if you are a prayer please pray for a mircale for young matthew and his mum dad and family - matthew is 3 and a half, and a little boys body can only take so much.