Glimpses

We are heading south to Seward for a couple of days to relax with our extended family on Lowell Point. I promise to write a more coherent post when we return on Sunday night.

Until then I want to leave you with a few moments from this past week:

 
1) In my senior center writing class on Wednesday we used sounds in a short description of a favorite place. A 91 year old man wrote about Honolulu in the 1930’s and ended by saying that the women wore real grass skirts back then. The lady next to him asked in her deep southern drawl what the skirts sounded like. “Did they swish and sway?”

“What are you talking about,” he responded. “I wasn’t listening. I was looking.”

 
2) We received one of our therapeutic reports back from Elias’s assessment that placed him at an 8 to 12 month level for motor skills. And once again I made the mistake of choosing the report as my bedside reading.

3)Standing in the kitchen with Elias in my arms, I kissed Nick for longer then a second. When I peeked at Elias he grinned and said: More ki-ing. And then he put his left hand on my head, his right hand on Nick’s and pushed us back together.

4)A NICU nurse recently attended a lecture by a prominent doctor who advocates that babies born under 26 weeks should not be resuscitated. This means Elias would not have been saved. “What do you think of that?” she asked me.

I’ve been thinking about it ever since and I still don’t know what I think of that.

All I know is that I need Elias here, out of breath from laughter, as he throws a ball down the stairs to my Dad. I need him to push our heads together and demand: More Kissing. And I don’t care if in medical terms he is not a “positive outcome” due to his significant developmental delay because there is no measure for spirit.

Amen.

Comments

[amy]

I was just researching and reading about my son's delays and came across similar thoughts on resuscitation. I am still reeling from thinking about my kiddo not being here. About the people who fought for him just giving up on him. I don't think that was ever an option. You nailed it when you said there is no measure for spirit. I wonder if they might create an assessment for that? Our kids would score off the charts.

[paige]

What the hell?

That's an attitude that frightens me, especially coming from a doctor.

So. Only the people who he decides are "worth it" are allowed to survive?

No one is perfect. Everyone "has" something. Something that complicates their life...it's not always visible. But we're all, all of us, hurt in some way, delayed in some way. All, all of us are beyond precious and important.

We're all of us hard work and tears and joy, complete and unbridled.

I seriously would like to kick this doctor's ass.

[Kate]

My daughter Chloe was born (and died) the morning of my husband's funeral. She was born at 25 weeks, just 16 oz., and her lungs were too underdeveloped for her to survive. I wish they had been able to save her. I'm glad they were able to save Elias for you.
And so what if he's at an 8-12 month level for motor skills development? He'll get there, in his own time. (He's beautiful, really he is.)

[Deidre]

I would say that Elias is more than a positive outcome; he is a miracle and a true gift. He has a beautiful spirit. Who he is and the lives he has touched are proof that the choice of who to save and who not to save should not be left to doctors with their narrow vision, sterile emotions, and limited trust of the power and strength of love. Sometimes I just have to believe that there are bigger visions for our lives than we can ever gleam or know and that hopefully in the end it will all be clear. I know all this is hard for you guys, just know that each of you are so so loved. At some point the therapists and the doctors are going to need to start celebrating how far Elias has come instead of lingering on how far he “needs” to go. There are too many ugly things in this world to not hold Elias up and celebrate his shining soul and all of his accomplishments. He has fought harder in his short time here than many of us do in our whole lives, which is unfair and downright sucks. Knowing his parents, I know who he gets his strength from! Don’t let them bring you down Christy. Maya Angelo said, “I may be changed by the things that happen to me, but I refused to be reduced by them”. Elias is perfectly Elias, no matter where his development is at or where it “should be”. He is happy, unbelievably loved, and progressing each day, those are great things which don’t always go on charts or reports but mean so much more. Keep on holding your miracle son and kissing your amazing husband, knowing that we all love you and are rooting for each of you.

[Heather]

Shame on that doctor - where is his heart? My sons pediatric neurologist told us that as long as he was moving forward in his skills, he will be fine. It just may (and does) take him a bit longer to get there than some other kids. At some point in their lives, a delay of a year just won't matter. If that doctor spent any time actually looking at the kids he is dismissing, he might just see that we all have something beautiful to give to this world. I so enjoy reading about Elias and his hard won triumphs!

[Virginia]

That doctor is an idiot. I've only ever seen pictures of Elias, but that boy's got something in his eyes, in his smile - he's determined. He's not a quitter, and I think he reminds those of us who read this blog that we have no right to be quitters either. Elias is a miracle - and we need miracles in this otherwise messed-up world, where people fight wars of choice and idiot doctors don't have enough faith to believe in the joy, the wonder, and the inspiration of a child like Elias.

[Becki]

Someday Elias will be a happy old man with memories of watching pretty girls in his youth.

As for that doctor: he's had a lot of schooling, but he still has an awful lot to learn.

[laura]

i worked with a doc like that who told me to my face that he would not have resuscitated my former 24 week son.
My thoughts were like yours.
Now the NICU nurse in me would ask what does that NICU nurse who told you that think?
I have seen hard, difficult, sad cases in my 16 years yet there are many that I wouldn't have given a second chance and yet here they are today, alive, thriving and living....my son is one of them.

[Erin]

Well, that would mean that my son, Isaac, a former 25 1/2 weeker, would not have been saved and I cannot fathom that. For whatever reason, we have been blessed with a former micro-preemie that has no serious health problems anymore(that we know about yet), and I cannot think of ANYONE that could argue that he should have been resuscitated! Even if he had serious problems and delays, I cannot imagine my life without him, and don't want to. Shame on that doctor -- you can't make those decisions based on gestational age alone -- those decisions have to be made considering ALL kinds of factors.

I am so glad you are having a wonderful time with your family!

Erin