Wednesday, February 20, 2008

Elijah's 4th Birthday.

Sometime circumstances mean that you are parted from your loved ones on special occasions. These occasions thankfully are rare. Not in my wildest dreams did I ever expect to be celebrating my son Elijah's birthday without him being present, for me at least not until I had gone before him. I don't expect the firsts of anything to be easy as many people have shared with me.

In preparation Julie and I wanted to make Elijah's 4th birthday a celebration of his life, Feb 7 is still Elijah's birthday even if he isn't with us in body to celebrate. So we arranged it so. We invited some close friends to join us at the cemetery to pray and to sing and then back to our house for chocolate cake and ice cream and we had some time with one of these families we shared some more time and food at a favourite eating place a place that we had celebrated together as families (with Elijah) before.

I didn't work on the 7th - just wasn't sure how i would be - I spent time making a wonderful chocolate cake - boy I know this was a favourite of Elijah - I watched him eat cake at his 3rd birthday at preschool for his 3rd and how he could hardly wait for it to be on the table let alone wait for the singing of Happy Birthday before he at least got his finger tips to the cake. I also spent some time in the afternoon preparing a DVD movie for his forth birthday. Recently I have become a big fan of the recording of somewhere over the rainbow as recorded by 'Iz' Israel Kamakawiwo Ole -

And so I spent time putting together some video from last year and photos of friends and family - we have so many photos of Elijah to choose from. Lots of tears as the final touches came together.

Julie and I went to pick up Francesca from the school and went to a balloon shop and got a bit helium filled yellow smiley balloon and a bit yellow balloon to write on for Eiljah.

We met our friends at the cemetery and had some time for chatting and sharing and some prayer and singing - " These are the days of Elijah"

Following that we had time together over gluten free wheat free chocolate cake and ice cream and watched the DVD movie I had prepared - I hope to break it down and upload to you tube some time soon. Over all it was a great celebration and we invited people to wirte greeting to Elijah on a big helium filled balloon which is now in the lounge by his picture.

It was a great celebration of Elijha's birthday !

One of the things that struck me was that the previous year as we had the year before that we prayed for Elijah and invited peole to lay hands on him and pray and in February 2007 I prayed "Lord let Elijah walk in this coming year before his next birthday and heal him Lord from his gentic condition" You know the Lord did answer my prayer bittersweet be it how he answered it. The days following Elijah's birthday and in fact the weekend was a time when I didn't feel like being around people and was really a malencolic time - time to cry and grieve.

As often I do I just felt the need to be closed to Elijah and to here him and to see him and so I spent quite a bit of time over the weekend watching snippets of him on video and some of his funeral. I guess there is a fear in me that I will forget what he sounds like. It's hard cause you can't hug televisions and so I hugged Francesca a bit more than ususal.

Elijah inspires me everyday.

Elijah I love you beyond words - continue to inspire your Daddy

Saturday, February 16, 2008

It's been a busy week and a couple of days since I last wrote - there has been alot happening in the Angel world and outside it as well.

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.

The email

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.

Thursday, February 07, 2008

7/02/08 - Elijah's 4th Birthday

Elijah - gives Matthew a push. I will share more about Elijah's birthday celebrations today in a later post. Apart from telling you that there is more new footage of Elijah on my Youtube site

There is footage from Elijah's 3rd Birthday. It was a bittersweet day today - I spent some time with Elijah by myself at the cemetery this morning talking to him. I did ask him to pray especially for Matthew today - for those of you who have been following. I told him it would be special if Matthew could stir on his (Elijah's birthday) Last night I posted this sentiment on the Angelman Syndrome and some one responded by saying " It would not surprise me in Matthew awakens tomorrow on Elijah birthday. No doubt in my mind the Elijah is right there looking over him with you and may just give Matthew the little extra strength to awaken seizure free. "

To God be the glory - thanks to all of you who have prayed for Matthew and ourselves today - Elijah's ministry and legacy continues - I do believe this will be the case as long as I have breath in my body. The following it and update on Matthew.

Until next time - Peace be with you and yours.

I received a text from Fay tonight to say that Matthew has opened his eyes a little. This text came right at the time some friends who were at our house were asking if I had heard anything about Matthew today. Initially they thought that the movement in his eyes - flickering was seizure activity - but there has not been any other signs of seizures. Matthew has also responded in opening his eyes also when he heard his day speak in the room and so there is some responsiveness - this is fab news. There was rejoicing in our house tonight.

I have spoken with Fay tonight - understandably she is not getting he hopes up too much at this point in time except to say that this is a good sign. The other news is that Matthew will have another scan this coming week and Fay and Nick have been told that what they had been told about on the previous scans may not be correct and that it is completly possible that the damage that showed up on the previous scan may be reversible. (Darren says - I am praying and holding out for a completely clear scan)

Fay is in good spirits and has been overwhelmed by the support from those who have sent her messages and emails and have been praying and thinking of Matthew and Fay and his family. I would like to extend on her behalf a big thank to you and appreciation and gratitude for you care and support during this time.


Monday, February 04, 2008

Update on Matthew

I have been able to speak with and share with Matthews parents during last week at the hospital and to be able to share with them something of Elijah' journey, and our time in the hospital and the last days of Elijah's life. I felt that I needed to reach out to Fay and Nick's parents and look for opportunities to serve them. I knew this was something I had to do and I was and continue to be inspired by Elijah.

Matthew is still in need of prayer, he was sedated and had his seizure meds changes and then slowly the sedation removed but he was still having seizures and so he was sedated again and his meds changed, even in the coma he was having seizure and so the medical staff have changed the sedating and the seizure meds. Matthew has also overcome a dose of pneumonia, he was for a day or so not tolerating his food, but now he is taking the food through the feeding tube. Thanks be to God.

I have been able to get the message of Matthew's situation out to many people locally and accross the country lots of the same people who stood with us during Elijah's life and especially in the last days of his life interceding before the throne, people have been praying for a miracle for Matthew and grace for his family across New Zealand. I have been in touch with Matthews' mum each day by cellphone texting - thanks be to God for technology and have been able to facilitate email updates and coordinate some of these people's responses. I just know how it was when Elijhah was unwell and when he went to the Lord, how grateful we were for those who helped communication with people. It's something small to be able to do for his family when I am here in NZ and physically seperate.

Yesterday at Church I received the following txt message written by Matthew's Dad

A Prayer for Matthew

For some of us
It's easy to run, to live to fly,
to soar thru dayd to day as challenges come by,

For some of us
It's easy to paint or sculp a work of art,
to leave behind a legacy, others think is great.

For some of us
It's easy to write or speak out mind,
to articulate precisely what others need to hear.

What's easy for you my little man,
is to love without condition,
to expereince the joy this berings in your daily mission,

Ypu've shown us whta it means to love,
this we never forget,
I'm proud so proud of all you've done
my precious little boy.

This is they prayer I have have to night,
please combe back to us soon.

Wriiten by Nick Matthew's Dad

It's Elijah's 4th birthday on thursday 7th and we will be going to the cemetery and having a birthday cake Yeah - my son will be 4 this week !

until next time which I hope will be quite soon