Us. Them.

The past year has been identity shifting in many ways. One of the more surprising ones for me is that I no longer feel like a nurse. When I used to interact with healthcare providers I felt like an "us" who came in street clothes. Being on the other side of the reflex hammer through 2 hospital admissions and twelve specialists, though, has left me feeling that health care providers are "them."

The hospital stays really finalized the shift for me. When we did the Pre-Op tour I felt uncomfortable in my flip flops. I wanted to curl my toes under. I had never, ever been in a clinical setting with open toed shoes before.  But day after day of living in a hospital as the mom broke me of that. By the time we left I had no qualms as I sauntered about the place in my sandals.

As a nurse I never truly understood the families that would call to ask for help with simple tasks. I felt they were lazy. And I would cut a hard look when I found out they had turned off an IV pump. When my consecutive hours in a hospital topped 100 I understood the families better. 

Some days I wanted to do every task myself because it gave me something to do. Other days I wanted to do nothing because I was exhausted and couldn't think straight. 

Everybody on the planet knows those pumps are annoying. It's intentional. It gets the nurses' attention. But it also made my brain cells start dying at a rapid pace. Hearing it from the hall for 12 hours is different from having it by your head for a week.

I recognize that I started getting cranky during our hospital stays. Looking back I have tried to factor that in as I consider the way I was treated. Factoring in my irritability, there were people who truly treated me like I was an idiot. Which didn't do much to help my crankiness. Having my intelligence change each time someone new walked in the room was maddening. Some talked to me like I was an equally valuable part of the team. Others treated me like I was the child with a developmental disability. 

Being stuck in isolation made me hate everyone. That was not the nurses' fault, I had shifted from cantankerous to downright ugly at that point. 

I am fully entrenched in this Mommy-thing, but do occasionally wonder what I'll be when I grow up, now that I'm not a nurse. One of T's speech therapists suggested I become a Speech Language Pathologist, since I do it every day anyhow. I did investigate programs and the best ones in the country is near one of my best friends. We'll see if the wind blows me to Iowa in twenty years.  

I also think being a park ranger would be fun. 

I've dreamed of a ministry where some woman I know and trust comes and takes my healthy kids when I have a sick one at home I want to focus on. I'm pretty sure I would have to create, it, though. I'll call the ministry, and the women who volunteer for it, Owa. It sounds grandmother-ish without stepping on toes. At least I'm assuming no grandma goes by Owa, since I made it up from "older woman." Young moms shouldn't be the only ones helping each other out. We need some backup from those who aren't in the trenches. 

I've also thought about being an exercise instructor. That would guarantee me time in the gym. 

Microbiology still thrills me. I actually printed off the application for MITs program. I decided not to submit it at this time, though, as they want to know my career goals. I don't think "raising babies" will grant me admission. Maybe I'll look again in a few decades.

Though I'm not a nurse anymore, I do retain some nurse-ish qualities. I prefer military time. I write notes in medical shorthand. And I make Medication Administration Records when my kids go on antibiotics. Old habits die hard.

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

Blowing On Embers

The house we're renting has a wood burning fireplace. In the cold months we frequently start a fire once our littles are asleep. Everything about it is lovely. The pops & hisses make a melody of their own. The flames jump and pulsate in an intoxicating dance. The heat roses our cheeks and unburdens the furnace. And it has given me a picture of my heart.

Sometimes when we wake in the morning we find embers still faintly glowing, despite hours of neglect. It's fun to blow on them, watching their heat and light increase with our breath. A few times we have seen a pile of gray ash, assumed it dead, but discovered embers hidden underneath. Most days, though, the remains are cold and lifeless.

Like a neglected fire, the warmth and life within my soul has been slowly dying. I felt the cooling begin shortly after we moved from Kansas City. I fought valiantly, attempting to restore the flame through prayer and Bible study and exercise. The slow decline continued. Sometimes I would feel a brief flare up, but would quickly cool again. 

I'm tired of the flares. I want a roaring fire, or I want nothing. I don't want to go to a conference. I don't want to read a self help book. I don't want to be a good Christian girl. I want Jesus. I want the joy of my salvation returned to me.  Though there are moments I despair, the drive for a roaring fire hasn't left. I want to be joyful and peaceful and patient and silly and kind. I want to commune with God.

The ability to create a single flame clearly does not belong to me, though. I feel guilty for not praying more, or better, and for not reading my Bible more. Astoundingly, those feelings have not spurred me on one bit. I am incapable of breathing life into my own embers. I am completely dependent on God to rescue me from this mediocre soul.

But I know He will. 

Though I feel like a cold pile of gray ash, the desire to write this post serves as proof there must be at least one ember hidden somewhere. I am optimistic that some poking around will reveal a spark underneath. And I have faith that Jesus will breathe life into me again. He's the only One Who can.

Breath of Heaven, hold me together.

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

This Time A Year Ago

I've been feeling nostalgic for the last two weeks, but have found myself unable to plunk down in front of the computer. Two out-of-town trips, a birthday, a party and two major holidays left my words to percolate in my head. My heart has grown warmer and softer and larger and all sorts of -er adjectives as I have focused on the beauty of my daughter.

This time a year ago I had a baby in a wheelchair in triage. When I finished roaring the first words out of my mouth were, "Is she really a girl?" The nurse's affirmative answer caused a wave of joy and relief to join my endorphin rush.

This time a year ago my favorite portrait photo was taken. I was exhausted, but completely content. This picture captures my motherhood journey.

This year I'm even more in love with that baby girl. I'm still in awe that I have a daughter of my very own. I enjoy so much about her: the delicate mannerisms, her stubborn determination, her gorgeous scrunchy face, her love of cuddles, her patience with her brothers, her irritation with her brothers, the way she tears across the room when her daddy gets home, and ever so much more. 

I love this child.

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

I Love This Apple

Ms Jan* brought some fun Fall activities a few weeks ago*. I found this apple behind the T.V.* after she left. I found it again with tooth marks* in it.

Ms Jan - This woman has loved us all really well the past year. And loving us isn't in her job description. Jan is T's Early Intervention Specialist. According to my handbook she is trained to, "address all areas of development." Though it's a large bill to fill, she has exceeded it. 

Conversations with her last year helped me recognize that T's delays weren't just a bump in the road, they were the road. She hugs T. She brings activities for N. She tells AB how delightful she is. She was the very first person to ask me how I was doing as our path to awareness was becoming clear. She is patient and kind with T and adapts her day to fit his needs. She recognizes that N is an integral part of T's development, not a hindrance to it. She marvels at how AB has grown. She has connected me with resources in the community. She helped me realize that all the diagnoses qualify as a disability and, therefore, qualify for assistance. Ms. Jan rocks.

a few weeks ago - Ms. Jan came to our house for the last time a few weeks ago. T has aged out of the program that Ms. Jan works for. I'm so bummed that I'm trying to find time to call the state to ask them to change their rules. She quickly became a treasured part of our lives. Just as losing a family member that you see every week is a loss, being too old to hang with Ms. Jan is a loss.

behind the T.V. - the apple hadn't just rolled behind the T.V. It was chucked back there. I could tell because it was tangled in the wires behind it, a few inches off the floor. T has a strong sense of order; unfortunately, it hardly ever aligns with my system of order. Apparently, the apple belongs behind the television. Just like socks belong in the shoe pile, airplanes belong dumped in front of the book shelf, and all doors must be shut. 

some bites - oh, those bites are what have morphed a piece of decor into a treasured keepsake. After I found the apple behind the television I put it on my desk to remember to take it to Ms. Jan. The next time I found it, the apple bore at least six sets of teeth marks. There might be a seventh, it's hard to discern. 

Those teeth marks represent so many things to me: T sticks everything in his mouth. He is persistent. He will push a chair and climb to whatever he wants. He loves apples. He's little.

The days are coming when his teeth will make much bigger marks. He might still be putting decorative apples into his mouth then. Only it won't be as cute when he's 23. The days of his disability being adorable are flying by. M and I will always see our beloved son, but soon the rest of the world will see a boy/teenager/man with developmental delays. Now, most people think it is darling the dedication T puts into removing his shoes. Very few people get mushy goofy smiles on their faces at the sight of grown men struggling to take off their shoes.

I love being a mom to small children. These little years are jam-packed with joy. This apple reminds me of the little years with all my kids, but especially with T-Man. It reminds me of Ms. Jan. It reminds me of the wild year we have had. It makes me smile.

If my house were on fire, and all my family members were safe, and I could run in and grab just one thing, it just might be this apple. 

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

Right and Wrong

I should not be taking time to sit and write.  Here's my view of the world this moment:

The clothes to the left need to be stored away in totes, in case we have another boy that wears size 2T clothing. T-Man has outgrown them. The train sitting on the desk needs new batteries. But first I need to buy more batteries. The giant stack of papers to the right is the bane of my existence. I need a secretary. When I leaned back in my chair to get a broad view of my chaotic room I squished N's backpack filled with three-week-old (undone) school work. The pink hat to the right of the screen has been sitting there for a month, waiting for a home. 

But I am writing. Because everything is right with life. And everything is wrong. The rightness and wrongness of life depend on who I'm with. (Though my inability to get this stinkin' text to realign to the left is feeling very wrong, and I'm the only one here.)

Here's what's right with life: My family is awesome. My man loves my kids as much as I do. Here is he laying down the law with our wiggly little girl.

Though I am a novice at sewing, I did manage to throw together some fabric to make hero capes for Christmas last year. N's came in handy when he got a free meal for being dressed as a super hero. The most delicious thing was watching him face off with another masked boy. It was the stuff that commercials are made of. I didn't feel like asking the other action star's parents for permission to take his picture, so I'm treasuring that moment in my heart. 

Something else right? Benadryl. Allergies are awful but medicine is available. Double bonus is the medicine makes children sleepy during the long drive back home from the neurosurgeon. 

This couldn't get any better. M set up my hammock for me a couple of Sundays ago. First I swung out there in the breeze with my Bible. Then the wild ones joined me.

Here's what's wrong: The last sentence took five minutes to complete. Between typing the word "me" and the period I stopped to unclog a toilet, discovered a bathroom fixture defaced and sprayed a half gallon of lysol.

The day to day chaos of life isn't really wrong, though. That was thrown in for comedic relief. What's really wrong is how many government agencies I have talked to this week. Just typing that reminded me that I need to call someone back because I still haven't heard from them. Actually, I'm going to call them this moment and keep typing while I'm on hold. 

I have spent the last year battling the medical field to get T the care he needs. It feels like that campaign is winding down now. Rather than resting, though, I am gearing up for the next theater of this war: education. Just writing that word raises my blood pressure. I have talked to many moms who have children on IEPs. (That's how everyone refers to kids receiving special education: they're on IEPs. IEP stands for Individualized Education Plan.) Every person has had the exact same advice: Be ready to fight. Advocate. Fight for what you know he needs. Don't let them steamroll you. Fight. 

I am too emotionally entangled to clearly and concisely say why that is so wrong. Maybe my sister will figure out how to order my thoughts for me. My kid has a disability. Rather than receiving help we receive resistance. It is absurd.

The lady from the Department of Developmental Disabilities told me on Tuesday that our culture respects and cares for people with disabilities. This was just a few minutes after she told me the county offers many of the most crucial services to only 10 people a year. That is such an outrage to me that I can't think straight.

Having a kid with a disability feels really wrong when I'm filling out papers and watching him fail assessments. It is rotten when we focus on everything that's atypical about him. It's horrible to watch strangers' faces change as they realize he doesn't understand them or can't do what they ask.

Having T as a son is really right. He is funny and affectionate and forgiving. It is a blast watching him learn new things. There is peace that washes over me when we cuddle. He gives the best, most enthusiastic welcomes I have ever heard. 

It is amazing how life can be beautiful and painful simultaneously. I wish I could run away from the monster of disability care and just take care of my kids. I can't. I am thankful that God has given me the ability to see the beauty He has flooded my life with, even in the midst of the pain.

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

List of Thoughts

I have a list in my phone that I compiled as blog-worthy moments happened in the hospital. I'm in a list mood, so this post will be an expanded form of that very list.

Stuff He Broke
How awesome is it that the first thing on my list has this title? Ah, T-Man. He falls behind on every assessment in every area of development, including fine motor and gross motor. (and we have had multiple assessments) So he has some mild deficits. Unless he's not supposed to get into something. If a thing is off limits in any way, the child becomes quite dexterous. He broke a phone, he dismantled a blood pressure cuff,  he shot IV-protecting socks across the room, he ripped labels from their permanent locations, he nibbled at his IV, he climbed up the side of his crib, he ripped the case on my tablet, he removed his cardiac leads, he chewed through 2 IV arm boards.

T's Development
This one is sorta sad for me. During both admissions nurses told me they were confident T would catch up with his peers once he started receiving therapy. I didn't have the heart to argue with them, or tell them that he already has a boat load of therapy. The truth is, he probably won't catch up. Not ever. But he's so winsome that people can't see that.

Almost everyone I admit his challenges to is quick to warn me not to hold him back or limit his future. Are you kidding me? I drag him and his siblings to a minimum of three therapy appointments every week. I have had untold meetings and doctor appointments to get him the best resources possible. I have re-tooled my parenting, learned sign language and changed out our toy stash. I'm not limiting him. I'm giving him permission to hop, dawdle & sing to his own drummer.

Work With Kids?
Speaking of how I've changed, one of the nurses was there when I was tricking T into taking some gross medicine. He was astounded. He asked, with a bit of awe in his voice, "Do you work with kids?" I laughed and said, "No, but being Mom to this guy has made me more patient and wily."

Kinetic Sand
Someone who does work with kids, though, is T's Early Intervention Specialist, Miss Jan. Our whole family loves her. T calls all his therapists "Jan." She brought over cool things for him to play with while he was in the hospital. The sand stuff was so deeply loved by everyone that I called to find out what it was. Kinetic sand. It is marvelous; get ya some. M pretty much gave an on-the-spot commercial as he sang its praises. Even AB loves getting her hands in it.

Quilts
The hospital has a substantial stash of quilts that were used on his bed. It was a much cheerier way to guard the bottom sheet than the chux pads adults use. I realized after several days that I should have taken pictures of all the quilts that came our way. I was in an all-or-nothing mood, though, so I took no photos. Bright cotton, stitched together as a quilt, really does bring joy and comfort.

Food Train
When M's co-worker created our food train, I thought it was longer than we needed. During the re-admission, though, I was exceedingly grateful for the food that poured in. I figured we would be back on our feet in a week. Now, more than three weeks later I am just starting to get my first glimpses of "normal." I'm thankful, indeed, for the people that have brought meals.

Embroidery
I didn't spend much time with my sewing in hand. But those brief moments when T was asleep and I was awake were made more bearable with embroidery. Thank you Vicky Sue for encouraging me to start!

Autumn Came
I knew the weather was becoming cooler, so I started washing longer, warmer clothes for my family before we went back to the hospital. I didn't get entirely through the wardrobes, though. You'll likely see N sporting capri's and 3/4 sleeve shirts for another week, or so. I was sad that I wasn't the person to put everyone in pants for the first time of the season. I had no idea I liked doing it until I didn't get to.

Melody
I would be sunk without my friends. Turns out I have some who love my family almost as much as I do. Many of them checked in with me throughout this past month. Lots put on us on prayer lists. If I started listing them I would miss someone. I'm thankful for my friends.

Getting My Brain Back
I had an epiphany as I spoke with my sister on discharge day. Many moms look forward to the time when they get their bodies back. Loads anticipate the end of pregnancy, or the end of breastfeeding, or the end of the baby weight, or the end of being a human hankie. I don't really mind my body being made family property. Sorta. I would like to ditch the baby weight. But what I most want back is my brain. I want to be able to focus, to remember, to think about what I want to think about, to talk about what I want to talk about. Instead, I'm being pulled all over the place, I have a mere shadow of my former brilliance, I think about curricula and diagnoses and talk about a lot of cartoon characters. Though these little years are precious and I enjoy them immensely, I am really looking forward to getting my brain back.

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

Home again, Home again, Jiggety jig

Home! We came home yesterday. Last night I felt mild guilt that I didn't post an update, but it quickly passed as slumber overcame me. I was tired.

I got up and rolling at 0430. When T woke up yesterday morning I put him in clothes from home. I talked to M and told him to hustle. I don't know if it was a show of optimism or desperation, but I had all our bags packed long before we received our official discharge orders.

M, N & AB arrived a little bit before lunch time. Since we have such a long haul back home we decided to have a final meal at the hospital before we headed for home. Though there was a moment of heartbreak when Food Service called back to say there was no dirt cake, tragedy was averted by ordering cheesecake instead. We ate, we picked up heavy duty antibiotics, we walked through the cool parking garage, handed over our validated parking ticket and darted for the highway. (well, "dart" is a bit strong. M was driving.)

The drive home was filled with the sound of chatter and little voices bellowing along with a VeggieTales CD. We found home long before we pulled into our driveway.

When we did get to the house we unloaded the car then started tossing children towards their beds. Those beds looked pretty cozy, so I tossed myself towards my own. When I woke up I hopped on my bike and hauled N to the next town. He and I played at a park while we waited for M to pick us up. We came home, ate dinner, played, splashed children with water, soap and medicine, then went to bed. It was a good day.

Short of breathing, the most necessary things I did yesterday were take a nap and go for a bike ride. I was angry. At everyone about everything. I was ripping people apart in my mind all day. Fortunately, I kept my acid-laced tongue to myself, but the thoughts were still proving poison for my mind.

The nap gave my body rest. The bike ride gave me a place to pour out my emotional energy. Though some dude made a snarkarific comment about my biking pretty early into the ride. So I spent the first half of the trip ripping him apart in my mind. But the last half I enjoyed the wild flowers and the cool breeze and reminded myself to order a cushy bike seat.

The 30 minutes N and I spent playing while we waited for my man to pick us up were good for both of us. He has also been under tremendous stress as his mom and brother have spent two of the last three weeks in the hospital. We raced and slid and climbed and jumped.

I'm glad I'm still nursing AB. It gives her and I several opportunities through the day to be quiet and alone. I have also been holding her more than our usual. I am very happy to report that she is back to scrunching up her nose and smiling. She had quit doing that while we were gone.

T is good, a bouncing ray of sunshine. We're trying to limit the bouncing, but basking in the sunshine. We will see the neurosurgeon again next Thursday to stop the antibiotics and remove the second set of sutures. Until then, he's supposed to be mellow (riiiiiiight).

I have a list of other things I appreciated and observed while we were in the hospital this time, but this post is already long enough. I noticed on my blog stats that someone from Israel checked in. (Hi Mom!) Thank you to everyone for loving and supporting us through this time of hospitalizations.

copyright (c) Elizabeth, Bug's Beef. All rights reserved.