When we went on our honeymoon or any vacation (at least prior to kids), I had the whole day planned out with extra events to fill in the holes (if there were any). We plan monthly camping trips through the warm weather months, annual trips to see family, weekly activities with the kids...
This journey that we are on with our Baby Rebekah is a really tough one. One of the hardest things at the moment is my inability to plan. I have absolutely no idea what lies in front of us so I can't even plan simple weekend plans past March... no trips to family, no weekend camping trips, no family vacations, no scheduled playdates at my house, no organized ongoing activities for the kids... Even people who don't like to plan would find this completely disconcerting! I cannot even commit to things I NEED/OUGHT to do. This makes me feel extremely naked and blind.
I see my inadequacies...
I find myself at times falling into the trap of comparing myself to others, or analyzing others' motives, or pridefully seeing something better in myself than other people. Pride is an area I have struggled with my whole life, and one that I pray about frequently. Well, God is stripping me of that sin and many many others. I am having to open up to people in a whole new way that is very uncomfortable, I am having to seek forgiveness in my thoughts and actions regarding those around me, and I am becoming blatantly aware that I cannot make it through the unknown future by myself. I am seeing my personal weaknesses in a whole new light and it is like a guady, flashy hotel sign blinking at me. It is exhausting and lonely at times.
I am angry...
I am trying so hard to trust God and to believe His promises, but I am constantly slapped in the face by a pessimistic and cold-hearted world.
Says my OB... "So Dr. Greig (my specialist) says that if the baby goes into distress during labor, you want to consider an emergency c-section. You know, that's highly unusual."
"Why is that?," I ask innocently.
"Because we don't usually do c-sections for babies that are not expected to live."
"Ummm... You do elective c-sections, don't you?," I countered.
"Well, yes."
"What's the difference?" (At this point, I am disgusted that we are even having this conversation.)
Separate conversation Michael has with a prominant neonatal doctor at Greenville Memorial Hospital...
Michael says, "We are expecting a daughter with trisomy 18 and we're trying to figure out the best place to have her. So I wanted to ask you about Greenville Hospital." (We are trying to determine whether to have Rebekah at a hospital with full NICU available, or at a smaller hospital that has a lower level of NICU available but would not do extensive resussitation measures.)
Doctor: "Have you talked to a geneticist?"
"Yes, and we're looking at this realistically."
"That's how you have to look at it." Thus ending the conversation and implying that it doesn't really matter where because doing what we can to give her a chance is not worth his time, the hospital's time, our time, or society's time. OUCH!
These are just two of many conversations we have had over the last month with a variety of people that doesn't just scream 'forget it, there is no hope!' but it leaves us with with a very bitter taste in our mouths that the world does not recognize the significance of this life God has placed inside of me.
Psalm 139:13-16
13 For you created my inmost being; you knit me together in my mother's womb.
14 I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.
15 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,
16 your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.
Psalms 127:3
"Behold, children are a gift of the Lord; the fruit of the womb is His reward."
I am butt naked...
I am in a place where I feel completely stripped to the bone. There is probably nothing more unnerving than imagining yourself butt naked in a house of mirrors. The thought sends chills up and down my spine. But here I am, butt naked in a maze of mirrors, with no immediate way out and forced to truly see all angles of myself and my life as I have never seen them before. It's very disconcerting, uncomfortable and how I would love to throw on all those layers of 'clothing' to 'hide' what's in front of (and behind) me.
Job 1:21
"Naked I came from my mother's womb, and naked I will depart. The LORD gave and the LORD has taken away; may the name of the LORD be praised."
Oh, Susan. Your humble heart makes me cry. My heart aches for how brittle and prickly I sense you feel right now. I know it's hard not to question people's motives, but know that everyone is on some sort of journey (although nowhere near as intense as yours, friend.) It is so hard to NEED help, but not WANT to need it. Remember that God knows all our secrets and loves us anyway. That is the cool part. He MADE us. He KNOWS and still thinks we are worth saving. I'm still praying for a full miracle. Why not. He can. And he is in control. You are one of his warriors (I'm bet you don't feel that way right now), but everyone around you can see it. Now, that is something I wish you could see in the mirror.
ReplyDeleteI can't believe the lack of compassion the professionals you are working with have. Makes me want to go all social worky postal on them!
ReplyDeleteAre you able to find a support group that may offer some options? Ugh..wish I could do something.
*HUGS*