Hazel, Queen of Brownies

My Place of Beauty

This child is gorgeous. Strangers gasp when they behold her. Though unfathomable, her physical grace is exceeded by her stunning mind, heart and soul. Every part is dazzling.  I have such joy in drinking in her girl-ness. My heart surges and aches within my chest as it tries to hang on to so much beauty. My daughter is lovely.

My Place of Adventure

This boy stretches and pushes and pulls and shoves me. He plunged me into parenting. This face breaks into a ready grin in anticipation of whatever exploit lies before us. He hunts magnolia blossoms with me. He reminds me that earth worms are fascinating treasures. He provides a living soundtrack for my life.

My Place of Peace

Oh, my son. These eyes absorb my tattered heart and reflect a whole one back to me. There is healing here. Every cheesy line from every happy song is fulfilled in him. Everything is beautiful when I stare into this face. Deep riches are stored here, and he gives freely.

My Place of Love

My man. He sees my beauty, my brokenness, my silliness, my charm, my wit, my bitter, my calm. He sees everything about me and yet the love I see in his face never waivers. In fact, I do believe I see more affection and esteem in his gaze now than I did during our courtship. He loves me through and through and through. Unspeakable, immeasurable. His love has brought me much good.

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

Once Upon a Sunday

I went to a new church recently. It is a small congregation but has a number of people with special needs there. They are well equipped to walk alongside a family living with disability.

The pastor's message was titled, "Love as Jesus Loves Us." I didn't get my hopes up too high since I've heard this thing about 87 times growing up in church. I was pleasantly surprised when two things jumped out at me. 

Jumping Thing 1
The pastor broke down the following passages in a way that helped me understand anew the absolute necessity of love.

One of the teachers of the law came and heard them debating. Noticing that Jesus had given them a good answer, he asked him, “Of all the commandments, which is the most important?”

“The most important one,” answered Jesus, “is this: ‘Hear, O Israel: The Lord our God, the Lord is one. Love the Lord your God with all your heart and with all your soul and with all your mind and with all your strength.’ The second is this: ‘Love your neighbor as yourself.’ There is no commandment greater than these.” Mark 12:28-31 NIV

 “A new command I give you: Love one another. As I have loved you, so you must love one another. By this everyone will know that you are my disciples, if you love one another.” John 13:34-35 NIV

Here's the breakdown:

Greatest - Love God

Second - Love Neighbor

New - Love Believers

I think having it simplified help me feel the weight of love. It's easy to treat love as an after thought. It is to be given supreme focus and attention. Love. 

Jumping Thing 2

God does not ask us to do what He Himself isn't willing to do. Jesus truly understands the hard stuff, because He has done it, too. (Hebrews 4:14-16)

As I perused the additional verses the pastor pulled to demonstrate the manner in which we are to love the word "as" grabbed my attention. I've underlined it below to emphasize it.

and walk in the way of love, just as Christ loved us and gave himself up for us as a fragrant offering and sacrifice to God. Ephesians 5:2 NIV

But if we walk in the light, as he is in the light, we have fellowship with one another, and the blood of Jesus, His Son, purifies us from all sin. 1 John 1:7 NIV

Be kind and compassionate to one another, forgiving each other, just as in Christ God forgave you. Ephesians 4:32 NIV

Accept one another, then, just as Christ accepted you, in order to bring praise to God. Romans 15:7 NIV

As I read these verses another one came to mind from Romans:

For those He foreknew He also predestined to be conformed to the image of His Son, so that He would be the firstborn among many brothers. Romans 8:29 HCSB

Alright, the reason why this thrills me so is these days I feel impossibly far away from conforming to the image of His Son, Jesus. The only thing it seems we have in common is dark hair, and my color is by Clairol. But Romans 8:29 is pretty much a guarantee that I will end up Christ-like. If God pre-destines me to be something, I'm going to be it. All of those other verses that talk about love and kindness and compassion and forgiveness and acceptance are going to happen for me. Not because I'm a rockstar. But because those are Christ's qualities. And His qualities are mine. Eventually.

Yes!

Oh to grace how great a debtor, daily I'm contrained to be.
- from Come Thou Fount of Every Blessing

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

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.