Samuel's 5th Birthday

The last nine days have been some of the longest, most exhausting, and most encouraging of our lives. Samuel passed away Monday night, Feb 18. He had several seizures earlier in the day, had suffered in the previous three weeks with numerous illnesses and infections, and had been 'worked on' for over an hour and half in the ER before there was nothing left to do but hold him, sing, pray and give him back to the One who gave him to us in the first place. 

We have been surrounded by family and friends - who not only watched our son die with us but also prayed and sang Samuel into the Kingdom of heaven and would not leave until we did; who have held us, prayed for us, and cleaned our house (twice!); who have taken Colin to soccer practice, Anna Catherine on fun girls dates and both of them bowling!; brought us an army's worth of food, given generously of their finances and given financially again!; who have wept with us, reminded us of God's love in Christ and given us freedom to grieve; who have, above all, actually been the embodiment of God's love to us in Christ.

Today is Samuel's fifth birthday. We celebrated tonight here at our house. We broke out glow sticks and spinning light toys. We looked at pictures and watched videos. We cried and we laughed. We are so thankful that this was by far his best birthday ever - free of pain and suffering and the limitations of his broken body, and present with the fountain of delights. 

We miss our Sambo. Our life is very different and we are just beginning to learn what that different looks like. We are grateful that God gave him to us for a time (nearly five years) - we have learned and grown so much!. And we are (learning to be) grateful that God has taken him from us - though more for Samuel's sake than our own.

(These photos were all taken on Dec 5, 2012.) 

4 Years Old!

There are several things that strike me as difficult to believe this morning:

1. Yesterday, Samuel turned 4. We've gotten so used to saying 2-27-08 at every doctor's appt and prescription pick up that it is simply hard to believe that that date happened four years ago.
2. It's been a year and a half since I last posted. Geesh! I guess that can be a sign of one of two things: lots going on or nothing going on. In our case, it has most certainly been the former. We've moved to North Carolina, I've started pastoring a church here, we completed a significant home renovation & are still trying to help Samuel make the transition. Which brings me to the third thing that is difficult to believe this morning:
3. I've been up (and so has Samuel) since 1am. The most recent troubles we've been having with Samuel center around his sleep. For years he has been a great and reliable sleeper. However, in recent weeks and months, he has gone from one bad night of sleep a month, to one night a week, to now, 5 nights in a row. Last night he went to sleep at 9pm and was awake at 1am, wide awake, 'No thank you, I'm not planning on going back to sleep anytime soon' awake. And that is with the max dose of melatonin that we're allowed to give him.

So ... would you please thank God for 4 years! It's simply crazy to believe. And would you continue to pray that we would find not only our strength for today in Jesus's love and power toward us, but also our bright hope for tomorrow?

Of course, there is substantially more to tell about the last year and a half, but all that will need to wait for now. In the meantime, here's a link to some videos of Samuel. The most recent one being last week. And here's a pic of him yesterday morning, sitting proudly at the island in our kitchen:

3 Days Post-Op

Well, we've been home for almost 48 hours now and Samuel seems to be doing really well. He is certainly recovering better than from his most recent other surgery (3 weeks ago). There doesn't seem to be lots of pain - more annoyance at either having his arms restrained or his head wrapped, or both. Despite all that, he has slept well both Saturday night and last night.

Samuel is out of school all this week so that means Sara is at home with him most all the time. Trying to keep an eye on him so that he doesn't do any harm to his incisions is a pretty draining task, so prayers for her endurance and energy would be much appreciated. We have sweet friends who are feeding us and checking in on us - we are grateful. I'm not sure how many times I've said this over the course of this blog, but I can't say it too much ... I can't imagine going through any of the stuff we've been through without faithful and loving and supportive family and friends. Jesus has been so good to us (and to Samuel) by putting us in such a community.