As a child I found it odd that the Friday before Easter was referred to as "Good Friday" when I did not understand how anything as sad and painful as Jesus being nailed to the cross could ever be considered "good". On this day, we reflect so deeply about all the horrible pain and persecution Jesus bore for all of us, sacrificing his life on the cross and forever changing our lives. We sometimes forget to explain, however, to our children the important message that good outcomes sometimes require facing challenges, pain and sacrifice. God would never have intentionally allowed his only son to experience such a horrible plight had it not been for how much "good" to all mankind would come with Christianity and living a life that glorifys Him.
I talked to Bella and Sofia about this because they didn't really understand it. I explained how it was important for people to witness Jesus' good and miraculous acts like healing the blind and feeding the poor, they also needed to hear the less welcome messages he was bringing to them from God about what was wrong with their actions... the cold, hard truth, if you will. Future generations needed to absorb the actions of the politically motivated leaders and the mob on that horribly painful day and realize what it means to be a Christian now.
The symbolism of that day (over 2000 years ago) unveiled the good and bad in all of us and most of all, he rose from the dead and lived..and forgave us giving us all the hope of everlasting life. So when I think of all that we celebrate during Easter week, I am quite humbled by the "good" of this horribly wrong time in the life of Jesus.
On a personal level, this weekend brings much emotion to our home as we think back to last year and Sam having spent his first Easter with us, only to be ambulanced to Sacred Heart two days later after his respiratory and heart rate symptoms became quite serious at home. I actually started putting together a video of the pictures of those days and had to take a break as it was just too raw. It was not the kind of first Easter I would have wished for as what was supposed to be a time of homecoming from a week in the NICU. The kids were hunting eggs and happy to be new big sisters, meanwhile, I was sick with worry over the fragile little man in my arms. Here were some pics from Easter 2010.
This year will be different as he turned the corner Tuesday night and seems to be almost back to baseline right now. Since Saturday, he had 2 antibiotic shots and 4 Dr. appts and lots and lots of fluid and rest. He has been on about 1 oz of pedialyte per hour on top of his 19 hour continuous feeds of 24 cal formula. We just lowered to half the fluids after they saw him start to improve and gain some weight again. He had lost nearly all of the weight that we had been so proud of gaining after starting the MCT oil 2 weeks ago. But fortunately we gained it back with the addition of all that fluid. He is a walking water balloon now. Kidneys are doing good turning out lots of wet diapers and we are even keeping a somewhat more normal schedule on the #2s. Oh the glory in counting those!
Here are pictures of Sam feeling good and playful. He is doing well now at holding things up above his body, against the weight of gravity. Making much progress. We are awaiting a bath chair and activity chair to help with better positioning.
Tomorrow should be busy with a resurrection celebration at our church and the girls singing in the wee ones choir. I am also looking forward to a visit with some friends in town visiting. We had the great pleasure of a quick visit with another family of friends on wednesday afternoon when Sam seemed ready for some fresh air. Here are a few pics I grabbed off her blog..the boys had a great time interacting.
Later that night we had a fundraisers party for the ronald mcdonald house and it was a nice outing. I was worried about it taxing him after such a hard week but he seemed to love the breeze and the people watching. He is so quiet and good in his little stroller seat, all the while his sisters were running around like hooligans with all their buddies.
He did get to meet Ronald McDonald himself but I think the character was a bit nervous about holding him carefully. Sam wasn't scared in the least, cooing at the clownish man. I think the character scared me a little though (flashbacks to the movie IT.. yikes!). I was really glad we could support a cause that meant so much to us. I hope to do even more for them over time. It was such an easy fundraiser and each shirt meant a night in the RMH for a family of a child in the hospital.
I recently met with several new nurses who may become our permanent week day coverage and they seem very capable. We have had some other interesting encounters in this process. I won't get started on the smoking fiascos and learning some nurses have siblings serving hard time. We are learning to be clear about what we need for his health and also feeling comfortable trusting someone in their care. We had a day of new frustration when we found out the nursing company (who had suspended service way back in January because they said insurance would only cover 60 hours a year) had just discovered that we had actually 60 - 8 hr visits per year..so basically we could have been covered through much of the hard winter months of illness in January through March. I was frustrated but it is water under the bridge now.
It has been slow getting things rolling and we only had the nursing a few days this week due to staffing issues but hopefully we work out all the kinks soon. I look forward to getting into a more organized routine and can help support Jason's office with administrative and marketing tasks. Having some aid here has already been a huge blessing. Thank you, Lord, for a few extra loving hands.
Speaking of hands.. Sofie and I enjoyed some girl time and she experienced her first manicure. I have always been a little strict about the no polish on little girls rule handed down quite literally from my Dad's rules for me and my sisters. Well, it was fun.. a little touch of pink never hurt any girl!
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