Spooky Hens

Catchy title, eh? That's what a friend of mine calls women who seem so "spiritual" they are barely here. Recently, I unwittingly sought out a spooky hen. Ever since giving birth to Eon, people in our circle have been encouraging me to call this woman since her daughter has Down syndrome, too. I was unready to cold call a woman that I'd never spoken to, until a few weeks ago when heart surgery was looming. I knew that this woman's child had undergone heart surgery and thought I'd drop her a line.


Admittedly, my expectations were probably a bit high. I thought we'd immediately connect over shared experience and brag on our children, discuss doctors and therapists, and reminesce about the moment of diagnosis. A full 90 seconds into the conversation and I knew I'd made a big mistake. She seemed so intent on discussing angel visitations and heavenly things that she made little earthly sense.



Throughout the conversation, it became abundantly clear that she really had very little knowledge of Down syndrome, which was very surprising to me given that her daughter is four years old. Most of the moms I've connected with have become experts on the subject by the time their kids are a few weeks old.



Unfortunately, at the close of the call, the reason behind the ignorance was shockenly apparent. She informed me that her daughter is being healed of Down syndrome, that even the physical therapist has noticed that she has less and less features of the diagnosis. And then she assured me that my son will be healed as well.

I was speechless. I so wish that I had stuck up for him. I wish that I would've told her that Eon is perfect, that he was created in the image of an Almighty God, that Down syndrome is a wonderful part of who he is. Instead, I mumbled something about needing to attend to my children and hung up.

In telling this story to other Ds moms, I've had some think that my point is that healing of Ds is impossible because a third copy of the 21st chromosome is in every cell of his body. Not true! I know that God could very well eliminate that extra copy if He chose to. He's God. My point is: Why would he want to? As Psalm 139 points out, God formed Simeon in my womb. His days were set before him before one of them came to be. God created him for a purpose and for His pleasure. I am blessed to be a part of it.

I'm sad for this woman's daughter. The best thing we can do for any of our children is to embrace them fully. I wonder what kind of message she is sending to her by insisting that she needs to be healed of the building blocks that shape who she is. Another friend of mine defended her by saying, "Well, she has a lot of faith." Does she? Is that what faith is - claiming that reality is different than it actually is? I don't think so and I'm pretty sure scripture backs me up. I'll get to that in a future post.

Pumping must go!

Well, after some soul searching after my last post, I think I might've figured out where my frustration really lies. I am constantly frustrated by my complete inability to accomplish anything. After spending a day looking at my time management, I realized that I spend SIX HOURS of everyday pumping for and feeding Eon! That does not include baths, diaper changes, therapy, consoling fussiness, etc.

No wonder I can't get anything done! Throw in the usual refereeing, soothing ouchies, detangling hair, buttoning buttons, tying ties, etc. that go with lots of littles, and it's a wonder they are even fed. What a relief to have a cause.

Now I just have to figure out what to do. I have nursed five babies for at least a year each. Since Simeon needs his milk thickened, I have been exclusively pumping for him for over four months. I really do believe breast is best and I wanted him to have the best start possible, but, at some point, you have to look to the needs of the whole family. His next swallow study is scheduled for next Monday. He'll be five months old on that date. If they don't clear him for thin liquids, I will begin to decrease pumping and introduce formula.

If they do clear him, I'll try to teach him to nurse. Is it even possible to teach a 5 mo.-old to breastfeed? Hopefully, we'll find out. I'm not hanging my hat on it. Any suggestions are welcome! Either way, pumping will soon be a thing of the past and I am looking forward to it. Maybe I'll actually get to complete a task once in awhile. :)

Functioning

The enormity of having a child with Down syndrome hits me at the oddest times. Just now, as I was changing his diaper, it hit me that I have a child with special needs. Probably because he doesn't actually have any special needs at this time, with the exception of thickened liquids, I have trouble wrapping my brain around that. (The recent surgery for the vascular ring was completely unrelated to Down syndrome - just one of life's quirks.)

But, when I think of what's to come, I am overwhelmed. I alternate between a fascination with articles and antecdotes about adults with Ds, and a complete denial that my child will be anything like them. At this point in the journey, I am simply overwhelmed by having six children, four of whom are under the age of six. But, I know what's coming. He's a wonderful baby and I am looking forward to his toddler charm, but with that will come more therapies and an ever closer determination of whether he'll be the elusive "high-functioning" or the dreaded "low-functioning" person with Ds.

There, I said it. While Simeon has equal value regardless of high or low, I want him to be high functioning for his sake, as well as ours. Why? Because life would be easier. No matter how much the Lord shows me about the value of suffering, I'm still human enough to want, hope for, even long for easy. Right now, everything just seems hard. It's hard to even complete a load of laundry without some sort of emergency around here and organizing the clan to even exit the house leaves me irritated and exhausted. I want to hope that someday, life won't be so blasted difficult. With Down syndrome in the picture, I'm not sure I can.

Home, sweet home!

We're home! For awhile it looked like we might have to stay, as his heart rate and temperature suddenly climbed, but after much prayer, the Lord had mercy and he stabilized. They decided to let us come home. The other kids are still at my in-laws until tomorrow so that we might settle in peacefully. He's doing very well.

My opinion of Riley, our local children's hospital, went up considerably because of this visit. The staff in the heart center is phenomonal (with the exception of one very arrogant nurse practitioner). They went out of their way to make sure Eon (and his parents) were as comfortable as possible. They obviously love what they do and they are great at it. We are very grateful!

The Lord is teaching me much about faith, spooky hens, and child advocacy. I'm sure I'll share most of it in another post, but for now, I'm going to enjoy the comfort of my own bed.

Out of ICU

Eon is doing great! He's been moved from ICU to the heart floor and there is talk that he could go home as early as Monday! He started the day looking miserable. I got here to relieve Shawn around 7:30 and he just looked pitiful. I asked Shawn if he'd been fussy and he said, "Only when he was awake." But, as the day progressed, they removed his chest tube, foley cath, and arterial line and he is starting to show us some smiles. Mostly he just eyes everyone suspiciously. His milk intake is good and he's tolerating it well, too. I finally got to hold him as we brought him to the 4th floor and that's the first time he really smiled, as well.

Praying for a good night, no infections, good pain control, and sleep for both of us.

Surgery a Success!

Surgery was a success! He's in the ICU, still sedated but stable. I'm exhausted and will post more later, but need to sleep. :) Thanks for all the prayers.

Surgery time

Spent the day in pre-op. Everything looks good and surgery is scheduled for 7:15 a.m. EST. We appreciate your prayers and I will update when I can.