Tuesday, February 17, 2009

This New Normal...



The Barclay 5, here we are on any given pizza night. Maeve had sketched this depiction of our family, its truth shocked David and I. If you had asked me to picture my family, Eamon would come without wires, but the reality is that he has many. And Maeve notices.

I was cleaning tonight, as I dusted around I couldn't help but see that reality, our new normal. The signs of life in our home include various pieces of equipment each singing it's own tune. And while I pay little attention to these peculiar sights and sounds, Maeve notices.


The Prince's feeding pump and IV pole, loose o2 tanks in the background.
The monitor that measures Eamon's oxygen saturation levels and heart rate

Empty o2 tanks lined up behind an end table


A tank in waiting



There are more, but these have become the everyday fixtures in our world, and have become part of our normal.
Maeve adores Eamon, no question. But, I have noticed a change in her lately. A surge of separation anxiety has emerged where deep security once reigned. Some behaviors are becoming negative "issues". So recently, I asked Maeve, what was troubling her? At first, she mentioned the "What-ifs" of a potential "break-up" of David and I. After reassuring Maeve of our marital commitment and love, I felt impressed to ask her if she ever worries about Eamon. Maeve crumbled into tears reporting that she "worries" all the time!
We talked, I offered reassurance, and tried to explain to my 6 year old how we handle concerns, fear, and prayers answered differently. I found myself saddened that chips had been taken away from my daughter's innocence, and I could not offer absolute answers for Eamon's future. I explained that we, as a family, trust that God will work all things together for our good because we love and believe Him. And for whatever reason, Eamon as he is, is bringing God's son the greatest glory. That we can rest in the promises that God has given through his word. Maeve seemed quieted, we prayed, and snuggled with each other.
Maeve is aware of much and has amazing sensitivity. The last several nights after I have prayed for her, Maeve has asked to pray for me. Maeve prays that God would give me sleep, and thanks me for caring for Eamon through the night saying, "that's so nice of you, mommy!" I shared some details with Maeve's 1st grade teacher, who said Maeve often reports that Eamon had a hard night, the alarm was going off alot and she can hear the nebulizer. All this without a word from me, or David, as to the events that transpire. But she knows, even though I work to protect her, she knows.
And, so does God.
"Those who sow in tears will reap with songs of joy." Psalm 126:5
"And God will wipe away every tear from their eyes." Revelation 7:17
I pray that the grace given in abundance to David and I would also blanket Maeve and Myles.
The Barclay 5 are all well-equipped for "such a time as this!"

2 comments:

Superhero Mom said...

Maeve is so blessed to have you as a Mommy. You are so wonderful with words. I love that the Lord has given your girl such a sweet sensitive spirit. God grace is covering your children Tracy Catherine, it is evident in their hearts of deep love.

Lisa said...

I find it AMAZING how Maeve embraces "The New Norm." She is just trying to figure this all out, WHY her life is "different" then others around her. THis is where we sit back and let God take control. He will give you all the answers you need to help Maeve through this moment in time. "life is Good"