Question

Tuesday, Dr. G. asked R & I what we thought about going through this again. He delivered Will for us - a child with a very rare syndrome (13 diagnosed cases ever) & watched us we became first time parents and all that that entails along with suddenly dealing with the realities of a child with a disability. Plus, Will spent 9 days in the NICU - not for anything related to his syndrome but rather for low blood sugar.
And here we are again - preparing to deliver a baby with several undiagnosed issues. We're embarking on becoming a family of four and rocking our only child's world and all that that entails while also wondering if Ellie can live and preparing to parent another child with a disability and who is medically fragile.

Have I mentioned I am overwhelmed?

So Dr. G. asked us if it is easier knowing (sort of) what lays ahead - the doctors, the specialists, the testing, the evaluations, the NICU, the unknowns, the stares and questions and comments, the therapies, the emotional exhaustion that completely drains you when your child is enduring so much, etc. - since we have done it before?

Are we more prepared because we have been there before?

It was a hard question to answer.

In some ways, I feel more emotionally capable - I know the absolute joy that is raising Will. I know the fierce protectiveness that is being his mommy. I know my life is more full because of our unique circumstances. I am excited to watch miracles occur for Ellie - as I do daily when Will runs or feeds himself or does anything really. (Yesterday, he climbed a ladder at a park all by himself!!! This is a HUGE victory - we've worked on ladders for probably about a year!!! when milestones don't come so easily, you celebrate!) When I keep the perspective that Will has somehow figured out how to do life, and so certainly Ellie will too, I do better.
I feel more prepared to fight insurance companies and organize medical bills. I kind of understand the system better.
I have become more confident with doctors - I don't just always take their advice but I research and I seek second (& third) opinions and I follow my gut instinct.
I have learned to advocate for my child. (I'm not good at it - but I'm learning.)
I have learned to respond to stares and comments when necessary and my skin has thickened in that I have learned to let a lot roll off my back - or to laugh.

But, in some ways, it is far more difficult to have a reference point in our past for the journey ahead.

I won't go into how overwhelmed I feel when I consider doing double everything above. (I beat that horse to death a few days ago, didn't I?!) Because I now know how exhausting living in "hospital world" is - I am feeling very apprehensive about that - & doing it for several months, potentially. (Will was only in the NICU for 9 days and I was wiped out.) Because I know the ups and downs of life in the NICU with a baby, I am fearful. Because I know the anxiety that comes with preparing to let your baby go into surgery (three times), I am anxious.

Because I know the pain that comes with cruel comments, I dread experiencing it for Ellie. Because I know the toll it takes on a marriage to deal with such unique, extreme circumstances, I am overwhelmed and unsure how to make it all work.

So I don't know how to answer Dr. G.'s question. In some ways, I feel we are better prepared emotionally. Maybe things won't be so shocking this time around. Maybe we won't be so hypersensitive this time. But, we're also gearing up for the exhaustion and overwhelm that we know is to come based on our past experiences.

As I look back over this, I keep noticing certain words - overwhelmed, anxious, fearful, exhausted. I'm horrible at scripture memory but I am suddenly reminded of verses that tell me to "not be fearful," to "cast all my anxiety on Him," to "come to Me, all who are weary." I am so thankful for a God who can meet me where I am at. I am so thankful for the ability to lay my burdens down at His feet. I am thankful that He can hold me - when I can't hold myself up anymore. I am thankful that He is a big God - that He has planned this family for me from long ago - when we were all just "figments." :) These children are created especially for me and I am thankful for a God who is always in control - even when my circumstances do not feel in control.

And maybe I'll have an answer for that question in a few weeks or months or a year from now (or whenever I come up for air.)

(As a side note, I do think it is better to know about your child's medical condition prior to their birth. Not that I've been on the flip side so maybe I don't really deserve to have an opinion here. It's just that in knowing ahead of time, I feel I am better prepared for the birth, can have the appropriate medical specialists lined up and present, have worked through some of the emotions, grief, etc, have better prepared family and friends, and can focus more on the blessings and celebration of life at the birth. Just a side note but I get asked all the time if we would have rather not known anything about our children's medical conditions until birth.)