"For you created my inmost being;

you knit me together in my mother’s womb.

I praise you because I am fearfully and wonderfully made;

your works are wonderful, I know that full well.

My frame was not hidden from you when I was made

in the secret place, when I was woven together

in the depths of the earth. Your eyes saw my

unformed body; all the days ordained for me

were written in your book

before one of them came to be."

Psalm 139: 13-16

Thursday, March 29, 2012

Its All About Perspective

Meghan is 4 weeks old today, and it’s funny how adding ababy to your life puts things in perspective!Before she was here, I was tired if I only got 6 hours of sleep…now if I get 3consecutive hours I feel like I could run a marathon (for at least an houranyway!), and feeling frustrated because you can’t get the laundry done, dinnercooked, spend quality time with your toddler, and balance the checkbook all inone day turns into feeling an amazing sense of accomplishment if you can take ashower AND get any of the aforementioned tasks completed in between feedingsJ

This week was the only week for a while with no doctorsappointments, but we have spent some time on the phone with them. Thegeneticist that saw Meghan in the hospital called to discuss the results of hergenetic testing. To our surprise, it all came back completely normal. We werehappy to hear that, however it means that we don’t have an explanation for whythis happened. We got the official “diagnosis” of VACTERL-H association (see http://www.webmd.com/brain/vacterl-with-hydrocephalusfor more details) because she has 4 features of the disorder- vertebral,cardiac, renal, and hydrocephalus. The frustrating part is that since VACTERLis so rare, little is known about the cause. Some sources say it’s genetic, andsome postulate an environmental cause. Either way, there still aren’t answers,and I am not a big fan of mysteries unless they are sandwiched between 2hardcover pages. It also means that we are excluded from a therapy that we hadhoped would help Meghan- giving her back her umbilical cord stem cells in hopethat it would repair damaged brain tissue. We heard today from Duke that theydon’t think it will help in her case. It’s frustrating to feel like the onething that we thought we could “do” for her had been taken away as an option,but I had been praying for a clear answer as to whether or not we shouldproceed with such an experimental treatment, and I suppose I got it- it justwasn’t the answer I was hoping for.

Its easy to allow myself to get caught up in the “medical”part of all of this, when all I really want to do is just be caught up in thesweet face of this little girl. Its hard to hear about all the things that are“wrong” with Meghan- especially when I look at her and see my baby. Besides theshunt, you would never know she was born with what the world calls defects. Iwas reminded the other day that the verse we claimed for her from thebeginning- that she is fearfully andwonderfully made- is still the unchanging truth.- because who she is is nother physical body, but the sweet spirit that lives inside. We are all imperfectin one way or another. It’s the reason we all require forgiveness. Sometimes wedon’t get the answer to prayer that we want, but I can choose change my perspective and align it with His, focusingon what I can do for her- care for her, support her, work with her physical bodyto help her grow, take each day and celebrate accomplishments no matter howsmall, and love her with everything I am. 

“And be not conformed to this world: but be transformed bythe renewing of your mind, that you may prove what is that good, and acceptable, andperfect, will of God”

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