July 27, 2011

brief update.

May: Living hell.
June: Living hell.
July: Pure bliss.

Pin is now doing well. I have not seen a seizure or spasm for three+ weeks and we are BEYOND grateful. She is on one anti-seizure medication and one anti-spasm medication and these seem to really be working. She has been off phenobarbital for 5 weeks and we are seeing MUCH more emotion, movement and overall stronger muscle tone. We have an overnight EEG this Monday (August 1) to make sure the spasms are truly under control. If they feel like she needs a "boost" to clean up her EEG even more, she will start two weeks of spasm/steroid shots.

Prayer Requests:
1. Pin's development.
2. Our hope (this roller-coaster ride has left us cautiously preceding forward for our hearts sake).
3. A total healing.

We love you all so much.

July 26, 2011

waiting is not fun. i like fun.

Two things I read online recently have stayed with me:
"Today I feel like the kid who missed the deadline for summer camp and stayed home all summer watching cartoons." Zooey Deschanel (via twitter)
"As we wait, we relinquish control, surrender our wills, give up our false hopes, and realize that if anything is going to happen at all, it will have to be God's doing." - Steve Smith, The Lazarus Life (Posted by my friend, Dennis Massaro via facebook).

It's been a weird summer. I'm realizing I'm a girl who likes order and routine (which is funny seeing I'm half Italian. Have you ever waited for a train in Italy?) and there is very little of that in the summer. That is the best part of summer and the worst.

I'm feeling a bit stuck in life right now. I know MANY of you are feeling the same way because I keep hearing it again and again from so many people. We continue to contemplate the next career steps for Jer. I keep cleaning our condo for house showings that never get feedback. We are in a weird place. Trying to change something, anything to get us out of the rut we have been living in. Lets be honest, my two new dining room chairs have brought me more joy than I care to admit (see photo above. Aren't they cute?).

Yet, we wait. As the quote above says, we relinquish control and surrender our will. I'm having a tough time doing that these days. I would rather read Hello Giggles than give up false hopes. I am scared that the Lord will have me living HERE in this place forever. I know in my head that is not true but my heart is SO ready to move beyond this 'tiptoeing' through life stage.

I have worried over and over again about Pin's future. She turned 15 months yesterday and is still not sitting up. I DO realize that if anything is going to happen at all, it will have to be God's doing. I'm just tired of waiting. I'm confident the wrong thinking is entirely MY fault. The life I have in my head is not matching up in the reality. I keep repeating the same simple prayer, now in my thirties over my daughter, that I did in my twenties over a husband: 'I will trust You even if it kills me.'

It's true. No matter how I feel, He is God and I am not. He knows and I don't. I want His reality and not the one living in my head (well, it would be amazing to be stick thin and only be allowed to wear J.Crew).

As for me and my house, we will wait on the Lord, while watching cartoons.