Impromtu at the PICU

I thought I'd share a discussion that happens periodically when we are in the PICU.  A Resident Dr. came by to observe Emily and here's how the discussion went:

Dr: Do you mind if I ask you a question?
Me: No, ask away. :)

Dr: You mentioned that you had another daughter with Spinal Muscular Atrophy (SMA), and now you have another one. Did you consider genetic testing? I'm thinking of becoming a neurologist, that is why I am interested.
Me: Sure. We understood the genetic probability of having another child with SMA, but had decided we wanted to try for another either way.  

Dr: Couldn't they test in utero?
Me: Yes, but we didn't want to have the discussions about abortion that would follow, so we chose not to test.  We were comitted to having a child, with or without SMA. (long story followed about Hopkins doing the wrong test when Emily was born, etc, etc)

Dr: Do you not believe in abortion b/c of religious reasons?
Me: Yes, religious and ethical beliefs. (should have expanded at this point b/c I have A LOT to say about this)

Dr: Even though her care would be so complicated?
Me: I don't believe that I should only make decisions in life that bring me convenience.  If I made decisions that way then I'd be compromising my beliefs at every turn.  We know we can care for Emily, so we chose the possibility of a complicated life to care for another wonderful child.  Everybody's life is complicated, everybody has a choice in how they will deal with those complications.

Dr: Thank you very much! (thumbs up)
Me: You're welcome! :)  Thanks for asking!

----  So, there's a little window into the life of the Lees.  We are an anomoly (along with thousands of other families). We make people wonder and consider life a bit differently.  Not b/c we're great, or selfless, or anything else - but b/c our life is severely out of the comfort zone that "normal" people live in.  It's either a curse, or an opportunity... a blessing.  I may whine and complain and kick and scream at times b/c... THIS SUCKS!  These days I feel it's more of a curse (in my head anyway), but I know that it's not.  It's just what we have to handle in our life.  But, we believe it is the life God has allowed for us, for His good reasons. So, we press on and make it to the next day - after all, we all suffer.

Thanks - Peace <><  


Anonymous said…
I really sorry you have not had the support that you should from JCMC. Please voice your concerns to the staff so that you can improve the conditions for yourself and for other families. We are lifting your family up in prayer. If you need anything please don't hesitate to let me know.
Jennifer Stuart
(the nurse that visited with you Thursday night)
Anonymous said…
God bless you and your family, Nathan! From the medical side (I take care mainly of dementia patients), it is (sadly) SO unusual to have people NOT think that living for convenience is the way to go.
There's an old English word that has fallen out of use - "thole" - that means "to suffer patiently." As believers, I think we are encouraged that our suffering (Emily's suffering, ya'll's suffering as her parents, etc.) is not in vain, but is, indeed, being used to perfect us - and is to be born patiently (except for the part about railing at the insurance companies, maybe!)and with great confidence that it is not without purpose.
You all remain in our prayers.
Grace Brooke Huffman (from CPC)
Visha said…
Nate -- that was so beautifully and eloquently said and handled. Your strength is amazing. God bless you, and we are praying you get home very soon.
Anonymous said…
Thanks for sharing that discussion, Nate. Good for the world to see!

Nate said…
Thanks for the notes. Grace - that's a great word. Thanks for introducing it to us!!

Jennifer - They've been great to us. I think we're stuck in a steep learning curve b/c our care is different than they are used to, and people have seemed very busy. We've had a couple conversations about it with the staff and they are spending more time with us and Emily to make sure we've got the help we need. Thanks for the concern and prayers!
Anonymous said…
as a HUGE pro-life supporter, I LOVE this post, and I have a lot of love for you guys too! Julie Goyette