It is well overdue that I posted. Last week as a family we spent special time remembering Elijah on the 2nd annivesary of returning him to the Lord.

One of the things that i have ound challenging is that other families withchidlren with Angelman Synrdome often have update and photos and videos to share of their children's progress and activities, but with Elijah no longer alive in the body I am unable to do so and so I decide that it was fitting that I commemorate elijah's annivesarywith a series of video clips. I was able to share these on my facebook account and also on a Facebook group that I have set up - Fans of Elijah.

Here are links to the videos I put together.

























And the latest is me changing Elijah - a month before he died






A number of people have commented to me as comments or by email etc about strength and the journey and questions like I don't know how you manage to continue to share. I would like to share two passages from the Bible that give me hope and courage and bring meaning to the Journey, the pain and the suffering

The first is from the bookof Sirah 2: 1-11 - I read this as a Mass reading on 24th of February this year a could of weeks after Elijah's 5th birthday


Sir 2:1-11

My son, when you come to serve the LORD, stand in justice and fear,
prepare yourself for trials.
Be sincere of heart and steadfast, incline your ear and receive the word of understanding,
undisturbed in time of adversity.
Wait on God, with patience, cling to him, forsake him not;
thus will you be wise in all your ways.
Accept whatever befalls you,
when sorrowful, be steadfast,
and in crushing misfortune be patient;
For in fire gold and silver are tested,
and worthy people in the crucible of humiliation.
Trust God and God will help you;
trust in him, and he will direct your way;
keep his fear and grow old therein.

You who fear the LORD, wait for his mercy,
turn not away lest you fall.
You who fear the LORD, trust him,
and your reward will not be lost.
You who fear the LORD, hope for good things,
for lasting joy and mercy.
You who fear the LORD, love him,
and your hearts will be enlightened.

Study the generations long past and understand;
has anyone hoped in the LORD and been disappointed?
Has anyone persevered in his commandments and been forsaken?
has anyone called upon him and been rebuffed?
Compassionate and merciful is the LORD;
he forgives sins, he saves in time of trouble
and he is a protector to all who seek him in truth.

The second is from the New Testament Letter from James - Chapter 1: 2 -12
Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing. But if any of you lacks wisdom, let him ask of God, who gives to all generously and without reproach, and it will be given to him But he must ask in faith without any doubting, for the one who doubts is like the surf of the sea, driven and tossed by the wind. For that man ought not to expect that he will receive anything from the Lord, being a double-minded man, unstable in all his ways. But the brother of humble circumstances is to glory in his high position; and the rich man is to glory in his humiliation, because like flowering grass he will pass away. For the sun rises with a scorching wind and withers the grass; and its flower falls off and the beauty of its appearance is destroyed; so too the rich man in the midst of his pursuits will fade away. Blessed is a man who perseveres under trial; for once he has been approved, he will receive the crown of life which the Lord has promised to those who love Him.

HOPE SPRINGS ETERNAL

Peace be with you all of you who read this and your families


Darren

In between sharing about the journey that I have been on let me share an exciting story from some friends of mine. They are the Fore Family and they live in the US and I have been in touch with Stephanie the mom for a few years now. They have a son Brady who has Angelman Syndrome - like Elijah.

The full story can be read at Brady's blog - http://www.sweetsweetangels.blogspot.com/ or at http://www.marcelcairo.com/BigHappyTent/Angels.html


In short the Fore family were on holiday - it had been raining - Brady loving water when it stopped couldn't resist playing in the puddles - que the kids of Marcel Cairo who met Brady in the puddle and both family enjoyed a time of puddle splashing together, the parents met and Brady's parent shared something about Angelman Syndrome.

Marcel shares "

Though our time with Brady and his family was short, it was one of those life-changing moments you hear about on Oprah, and maybe not for the reasons you would assume. Sure, Brady and his syndrome elicit an instant empathy, but I had an epiphany, not just empathy.

The epiphany I experienced was not instant, nor was it sought. It basically crept up on me, and then on my wife, Leigh. When we left the campground in Florida, there were no long protracted goodbyes, no fanfare, no exchange of phone numbers, no promises, only a simple, “look us up on the web wen you get home and I hope you stay in touch,” from Brady’s mom, Stephanie.

Two weeks later, when I started making the movie of our camping trip and saw the footage of my kids playing with Brady, all those joyous feelings returned, and that’s when everything just came together in my head.

Camping isn’t just fun, it’s therapeutic. For Angelman kids and their families, camping is also an escape from the limitations of the syndrome. Angelman kids love to laugh, make noise, throw things, horse around, play in water and socialize. Parents of Angelman kids want to give their angels the freedom to do all those things daily, but without wrecking the whole house or turning the neighborhood upside down."

And from this "Big Happy Tent" was borne - check out this work - a foundation to help AS families go camping.

As I reflected on this wonderful encounter - I recognised an ability our kids have to enjoy the simple things and take delight in sharing the simple things with others I am learning to take time to enjoy the simple things.