Youngest Son and His Not - So Battle with Sickle Cell Disease

Youngest Son was born into this world in November of 2010. He is three years old and fully feeling out his wonderfully unique personality. We have yet, in this household, to go through the dreaded "terrible two's". For this family, it has eternally  been the "terrible three's". I think that being terrible and three years old is much worse than being terrible at two. Three year olds can speak a lot clearer and are much more understandable than two year olds. I was much more gracious with my sons at two for things like defiance or sassiness. I could write it off as an inability to fully communicate. But at three, ohhh, they know what they're saying and how they're saying it! Youngest Son is no exception to this phenomenon.

Tonight I had to put Youngest Son to sleep a full hour early because he was just plain nasty today. It was almost like he couldn't control himself. Eldest Son created a beautiful "race track" using printer paper, markers and strategically placed paper loops taped to the track. Youngest Son snuck into the dining room and tore the paper loops off the track and came to his brother to laugh and gloat about what he had done. 

"I broke your paper! I broke your paper!" he chanted with the cutest grin on his face; his large brown eyes sparkling with mischief. Eldest Son was miffed. He drew his mouth to holler at his little brother but I stopped him. Calmly and quietly I called Youngest over. 

"Did you break brother's racetrack?"

"No"

"Tell the truth young man...."

Youngest turned to his older brother, "Sorry brother." 

"No no no. Tonight little boy that's not going to cut it. Go to your bedroom and wait for me." 

Oh the tears! How they fell across his scrunched up face; those doe eyes widening and continuously filling and overflowing. He almost had me. I've seen that same face, those same tears many times in many hospital rooms over his brief three years of life. 

Youngest was diagnosed with Sickle Cell Disease (hemoglobin SC) about two weeks after his birth. We, as a family were utterly devastated. The agony of answering your phone to hear some tinny voice on the other end regurgitate lifeless test results about your perfectly perfect brand new baby was unbearable.They hang up the phone, bidding you a good day. But they get to go to lunch and eat their lean cuisine in the doctor's office break room; cracking jokes and waiting for the next appointment to book. I was left holding my baby, uncertain of what was in his future. The threads of my optimism unraveled into a colorful pile of mess on my living room floor. 

But despite all that, God is good (church folk know to say "all the time")! Youngest's diagnosis wasn't too big for God. Nope. The doctors spoke things like bone pain, anemia, splenic sequestration, skin ulcers, blindness, delayed growth and seemingly a hundred other anomalies over my baby. But my God spoke one word over Youngest: Health. For three years Youngest has not had a pain crisis, or problems with his spleen, or needed a blood transfusion, or had poor eyes, or delayed growth (90th percentile in height and weight) or even yellowed eyes (which is very typical of Sickle Cell patients). 

Yes, we've gone to the hospital at least half a dozen times. Because of the nature of his diagnosis the doctors are always scared of him contracting a blood infection. So as a precautionary act, when Youngest has a fever of 101.1 degrees or higher, he automatically gets admitted to the hospital for observation, is given an IV, administered a MONSTER dose of antibiotics, and has blood drawn for testing. Which brings me back to those familiar tears I saw tonight. I've seen those painful and sad tears in the hospital when nurses poke my baby's arm or hand and put that unfairly large needle in his arm. They try to bribe him with stickers and teddy bears and all sorts of gifts that my son knows so well will not take that pain away. Our last visit to the hospital before anyone was in the room, he looked at me with those large brown eyes and almost defeatedly whispered "I don't want them to stick me with the needle." I refuse to lie to him so instead I hug him and tell him "I don't want them to stick you either." Inside of myself, I'm praising God that this is all Youngest has had to go through! Right now I'm elated that his biggest fear is a needle! Every time we walk into the hospital we walk out with the doctors having found absolutely nothing wrong.Woo hoo! Praise you Jesus!!!!!

Youngest and Eldest coloring in the shared 

hematology/oncology waiting room. 

In the background a mother receives her

 daughter's chemotherapy aftercare instructions.

The hematology department shares a floor with the oncology department. And once while on a routine checkup I watched a mommy (just like me) receive her after care instructions for her beautiful full-head-of-gorgeous-curly-hair daughter's first round of chemotherapy. My heart broke. But as broken as I felt for that family, I felt equally guilty for feeling relieved that it wasn't Youngest or Elder sitting in that wheelchair. Husband snapped a picture of the boys obliviously so near to disease and death, coloring pictures. It's such a hopefully sad picture. 

I'll take terrible three's four's and five's over hospital visits any day! I'll take fears of white doctor's coats and needles over blood transfusions and blindness every time. I'll take sassy remarks and an overly tired, crying toddler screaming at the top of his lungs over and over "YOU DIDN'T SAY GOODNIGHT!" even though I said it and gave him a kiss. I'll joyously take it. Well, for a little while at least. Cause that screaming gets on my nerves and I have to take a deep breath before I feel like spanking a misbehaving child.      

Fantasies about Gardening

So, I am a city girl. I was born and raised in Chicago. Growing up, my family always lived in apartment complexes with lawn signs that glared at me "KEEP OFF GRASS". One property manager whose name was Stanley used to watch us neighborhood children at play with a hawk-like precision. If we dared to step on the lawn we would most certainly hear in a heavy Assyrian (I know it's not a language) accent "Geet off the grrrass or I keek your ass!" In retrospect, I'm sure he had more than enough of his fill of rowdy little children trampling the pristine grass in the apartment complex that sat behind the Venture (anyone remember that department store?!?).

But as a city girl, I always dreamed one day, I would have a garden. A beautifully lush garden that I would tend. I would look like those dainty gardening women in the Miracle Gro commercials. I was going to have a gardening hat and white gardening gloves with tiny rose-colored flowers on them. I would have a pair of small garden shears and I would prune back my rose bushes while kneeling on my foam knee-pad. My countenance would be as sunny as it was outside and I would retreat to my residence occasionally to refresh myself with a cool beverage (never water, always lemonade).

I held onto that fantasy until a year ago when we rented our first home. 3802 rests on a lot of land that is approximately 1.5 acres. Moving from our smaller apartment, we did not know what we were getting into. The house came with 4 large flower beds; 2 in front and 2 in back. I also decided I was going to have a vegetable and herb garden. This land kicked my butt!

No one told me how hard it is! When we were finalizing the rental agreement with the owner, I was telling my students (at the time I worked up north in the country) about how much land we had and they inquired if we owned a zero turn mower. I naively asked "What's that? I'm from Chicago!" (that's my blanket answer for all things foreign and country to me). A roar of laughter permeated my classroom and the condescending questions ensued.

"You don't know what a zero turn mower is?!?"
"No. Why would I know? I'm from Chicago! I could've cut the patch of grass in front of our apartment with a pair of office scissors!"
"Bwaaaaaaahaaahaaaa!!!!!!!"

They laughed because they knew the fate that awaited me. I was clueless. If we're being honest with one another, I still am. I Google ALL of my "garden" questions and believe me, I have plenty! Last year was a test run; a season of not only gleaning food but knowledge. This is what I learned:

 I need a zero turn mower almost as desperately as I need water to survive on this property 
The push mower ain't cuttin' it. I tried to do it once and it took me almost 3 hours and a near E.R. trip because of the asthma attack that ensued after.

 Weeds are an evil gift from hell to torture and maim my already bad back
 My fantasy was a cushy knee pad. No one said anything about the fact I'd be on my hands and knees!  I used to love to see my boys pick up a dandylion and blow the seeds in the wind. Now, I'm like "Stop it! Stop it right now! We'll have those things all over the place!!!"

Pickup trucks are a necessity (especially when hauling massive quantities of dirt and mulch)
Being a city girl, I never understood why you would purchase a vehicle that only had the capacity for three people to sit in it. But now I know why. People who buy dirt and mulch in bags do so for 1 of 2 reasons:
     a. they don't own a pickup truck with a bed
     b. they don't have a friend who owns a pickup truck with a bed
The pickup truck bed is a priceless asset. You can move dirt, or a washer and dryer; in both cases allowing you and me, the consumer to save on our purchases by avoiding markups for plastic packaging and delivery fees.

Gardening is a humbling battle not a leisure activity
I have bled, swelled, stopped breathing (because of asthma issues), pulled muscles, gotten splinters, cracked and dry hands, been chased by bees, stalked by a garden snake,  and been afflicted with weird and mysterious rashes while "gardening". No no. It needs a new name like "Brazilian Garden-Jitsu". I burned over 1000 calories in the garden yesterday!!!! Since the beginning of the gardening season, I've lost 10lbs! I use an old pair of my husband's fire-gloves (don't ask me the proper name for them) to garden in. I have a smelly pair of running shoes instead of beautiful garden clogs and horrible tan lines on my back (who has the patience to deal with a floppy hat when you're snatching up grub and pulling weeds?).

The harvest tastes more delicious than anything I've ever bought in the grocery store
There something about laboring over your food that makes you savor and appreciate every leaf, seed, and stalk. My food is precious. We are blessed to live in a country where there is an abundance and I do not want to take that for granted. I try to compost and reuse every bit of yard/garden refuse I can find a use for.

Truly I love this gardening thing. I remember how elated I was when my first yield of tomatoes came in. I was in awe that something that started out no bigger than the tip of a pen could grow into a beautiful, vibrant EDIBLE creation! I truly reverted that day to my 10 year old self, as I was parading my tomatoes around the house in a silver colander, desiring to eat them slowly as to savor each scrumptious bite. There is something so satisfying about looking at the harvest and saying "I did that and it's good to me."

This year has been better. I knew what to expect. I learned from my mistakes, and kinda like childbirth, once it's all over and done with, you forget how laborious it was. The same happened this year. I decided to reshape my flower beds in front. Lots of work and I found out one of my beds rested on top of a concrete slab. Horrible! In homage to being a city girl, I added a funky pathway on the side of our home using materials found on the property and got some free "tire planters" from the local tire repair shop. I put wildflowers in the tires and the industrial-ness of that little walkway full of rubber and brick, rocks and wood, reminds me of home; bare and hard with strategic sprays of foliage to keep adults sane and little kids dreaming of patches of land, straw hats, dainty gloves, and pretty potted flowers.

Lost and Found

I never thought I'd see her or talk to her again. I didn't know she even thought about me or had been inquiring about me for the past 20 years. My last memories of her were a drawing she sent me of a panda or teddy bear (it was so long ago, the details have faded) and a phone conversation that lasted maybe 5 minutes. Even though she was my half sister, we didn't speak the same language; we still don't. But I thought since we lived so far away-countries away- that our relationship, like so many other things, was lost in translation.

All it took was a Facebook friend request. That's how close we actually were! I feel angry about that. I feel like I could've known my sister years earlier. Through one keystroke, a click on the "send" button, my sister found me. My older sister found me! She's not my only sibling. I have, including her, five. One whole sister, a half brother and sister from my mother, and a half brother and sister from my father.

My father immigrated here from Central America in the late 70's and married my mother in the early 80's. Little did my American mother know, my father came here undocumented and my mother was his ticket to a legitimate life in the United States. My father believed, as many immigrants do, the streets here in the US are paved with gold. Coming here is a way out of the very real misery and hardships that exist in their home countries. They believe they will have their whack at a piece of the "American Dream". But for many, they strike out. They spend their days toiling and working until their knuckles, knees, and backbones are worn to slivery remnants of the youthfulness they initially possessed. My dad fared somewhere in the middle.

He was a factory worker and worked just hard enough to maintain a paycheck. I don't know what he does now for a living. I deliberately stopped knowing about 15 years ago. That's when my father relocated to Arizona with his new very young wife and stepson, and essentially became a "phone dad". I got a call for my high school graduation. He said he didn't have enough money for a plane ticket but very soon after, sent me pictures of his vacation to the east coast. He called to congratulate me on graduating college (with honors might I add) and an empty promise that he'd make it for this one. He didn't, nor did I expect him.

I stopped caring about him long ago.  He wasn't present in any part of my life and more importantly, he had sexually abused my older half sister (his stepdaughter). The only thing he has ever been good for is inflicting unnecessary pain. I'm not sad he's absent (a somewhat mutual decision) from my life. The only thing that saddens me, is in his absence, my sense of culture and belonging and family was usurped. I lost half of my extended family. No paternal grandparents, aunts, uncles, cousins, brothers, sisters, neices, or nephews. The potential to know them, counted as collateral damage from my father's mayhem.  And then I get that Facebook friend request.

Thank God my husband knows Spanish! My husband is also half latino. He was fortunate enough to have lived with the parent who spoke Spanish. He is much more "latino" than I in that sense. My older sister and I spoke that night. I was in shock I think and said very few words. Husband was like "what do you want to say to your sister?" I was like "uhhhhhhh". I mustered "te amo mucho". That means I love you a lot. She said the same. We giggled like little girls. No translation needed. She didn't have a web camera but we wanted to see each other. We decided to try to video chat the next day. She would go to an internet cafe. We must have said I love you in English and Spanish a hundred times.

I spent the next hour uploading photos of my family onto her Facebook page. Kids and me and Husband. I was so happy to share! I looked through every picture of her's and mulled over every mundane detail. The color of the walls- lime green. Very latino. Always a tank top, never a sweater. Dewy skin and sun-kissed noses. Brown and fair hues of pigmentation in the same family. Curly hair and straight hair; all ebony. Authentic latino food. This is what I longed for and here it was staring back at me in photos, and these were my family's photos.

The next day she called again. The first time, I rejected the phone call. I think it was too much. I was overwhelmed. It's funny. I know she's my sister because she did just what I would've done. She called back a second time right away. My husband gently encouraged me to answer. After about half an hour of technical difficulties, (texting and messaging and failed Skyping and grainy FB video chatting with no sound) I saw my sister's face. I saw bits and pieces of me in her. We made the same funny faces and we both had curly hair. I got to see my niece and it was like looking at an exact replica of my younger sister here in the States. I belonged.

We talked for almost 2 hours. My husband stayed nearby to translate. And inevitably the topic came up of our father not teaching me Spanish (which in latino culture is a big deal). I explained to her he left when I was 5. He didn't have time to teach me. She cried because we each shared a common story. He left her when she was 8months old. She still talks to him. Every month she calls him and every month, absolutely unsolicited, he tells her he has no money. She's not asking for money. She just wants to talk. She cried again. I tell her he's not rich but he's very comfortable. He's lying about not having money. We used to hear that lame line too. "Daddy, can you take us to the amusement park?" "No money. Lo siento." Cheapskate to the max.

Then a question popped into my mind. Years ago he used to tell us he mailed money and clothes and other helpful things to them. I asked my sister if he actually did this. She said she never got it. I cried. Her life was harder than mine and I feel a little guilty. After my father abandoned his first family, my sister's mother couldn't deal with it. She was sent with the equivalent of a  hundred bucks to live with her grandmother. Twice rejected. "Duro", the Spanish word for hard was the life she was given. She told me how, over the years, she asked for us often and my father always came up with an excuse as to why she couldn't contact us. There was no excuse worthy of keeping me from my sister! We both cried. I realized very quickly that you can't catch up on 20 or more years in one fell swoop. This is why our lives are, God willing, long. This is why some books possess 200 or 300 pages. This is why TV mini-series exist! You can't squeeze 20 years into 2 hours.

Yesterday she added me as a "sister" to her Facebook page. I almost melted into a puddle on my couch. Instead, I joyously confirmed that status change. Yesterday I shared a picture of my oldest son on her timeline. He lost his first tooth. I had to google translate how to say that phrase because my husband wasn't around. This relationship is going to be work :) I need Rosetta Stone! She liked the photo and said how handsome he was "que guapo!". I brimmed with an emotion I'm still trying to figure out. Somber joy; sweet with a bitter end.

I was reminded of the story of Job in the Bible. Job's life was obliterated by the Devil. Everything was taken from him except his life. But the beauty of this story is, because of Job's unrelenting faithfulness, God restored Job giving him twice as much as he had before. I grew up without a father; thinking for many years I would always have this splintered and disjointed family life; only knowing a few shallow layers of my family history. I totally felt like a historical orphan. But here, after many years, God has restored what was withheld from me. It feels like a double portion of family! My husband joked that the number of overtly latino names popping up in our friend suggestions has increased exponentially since accepting my sister's friend request. Some of the names are familiar- I know them to be family and I am happy for now I can rest in the comfort that my family is not lost, but actually found.    

A Dream

I'm a vivid dreamer. I always have been. There are seasons where I dream very little and then there are seasons where I dream often. Sometimes they are nightmares or plain nonsense. Sometimes I feel like they are messages from God; encouragements, or warnings, or messages for others. I've woken up in cold sweats, tears, and in states of pure joy and bliss. I had a dream this morning and it left such an imprint on me I had to write it down: 

I was preparing to take my son on a fieldtrip. Like usual (as in the conscious world) I was rushing to get things done so I could leave but I was late. I only had a couple of minutes to leave but decided to turn on the TV and check the weather channel to see if my choice of clothing was weather appropriate. On the TV screen I see the weather man reporting on a lightning storm happening in another part of the city. What I saw was stunning. The beautiful bolts of lightning looked as if they were searching for something to strike if only to create its intense light. As I watched, the lightning intensified and the bolts became more frequent and concentrated. The sky was a cavernous indigo with flaky edges of eggplant purple. I stared and was rendered immobile at what my eyes saw.  This reverent fear crept into me. The lightning bolts were more powerful and shone brighter than me. Their existence was enviously simple: just because.
The color of the sky deepened and the lightning bolts luminescence intensified exponentially. It was almost unbearable. Eventually the lightning bolts became so dense they began to swirl around each other; creating this twisting helix of bolts but narrowing into this one intense point of light on the ground. The bolts created this interesting tension between beauty and danger and I couldn't turn away. And then it happened. It's as if the earth couldn't take the intensity the lightning bolts offered, so the earth had to respond to what it was given. The ground sparked in intense colors I had never seen on earth. The sparks flew with flecks of debris into the indigo air. And poised against that sky flew oranges and golds and neon pinks and colors I have no name for. I gasped in awe and wonder but still felt scared. 
The lightning didn't relent and neither did the earth. And then I saw the shockwave. It had become too much and a great explosion on the scale of an atomic bomb impact commenced. The TV camera capturing this footage shook and from a remote location, the Weather Man hollered "Are you getting this?!?" I could hear the utter terror in his voice and it triggered me to snap out of my hypnosis. 
In my home, far away from this occurrence, my face met the wooden planks of the floor. I was trying to brace for some imminent impact that would eventually reach me. But before I could truly enter into a state of panic and fear of utter annihilation, my 3 year old woke me up holding a sports bra asking me why I left it in his room.

This is as close to what I saw in my dream as I could get

   

Ponderings on the Fierwife Sub - culture

So, I'll admit. I'm new to all of this. My husband has been an official fireman for almost 4 months. He had 7 months of training so he's nearing a year of doing "fire-manish" things. I have no problem admitting that I am acclimating myself to this brand new chapter of our life. It's different but I don't feel traumatized or emotionally damaged by this experience. If anything was traumatic, it was academy. I thought that would be the easiest on our family but I was wrong. Academy was horrible. They worked the hell out of my husband physically and mentally and then he would easily have 3-4 hours of studying when he came home. So a typical day for us was him leaving waaaaaay before the sun rose, me handling the household, him returning home around 4 or 4:30, him leaving to his "office" (ehm, the bedroom) to study, then me constantly hushing the children so he could study. I definitely was ready for him to be done with academy. When he wasn't studying he was soaking, icing, bandaging, or putting a heat pack on some part of his body. I dressed an incredible amount of bloody knees, elbows and injured body parts. Now I know why a lot of firemen marry nurses- they're always beat up and it's easier to have at-home health care. At times he felt culturally out of touch being a city boy (a BIG city boy) in a room full of country boys.  But, graduation came, (one of the proudest days of my life) and left, and the 24/48 shifts started with no fanfare. He was a fireman.

During the academy process, a friend of mine from church (who ABSOLUTELY coincidentally happens to also be married to a fireman) told me to check out some of these firewife websites. I googled them and discovered this strange world of "firewife-dom". It is a subculture of women who devote their websites and blogs to fire-wife support, encouragement, and talking about how heroic their "firemen" are. Seems admirable. But as I read some of those blog posts, something rubbed me the wrong way about them. I kept reading logs of their days and it all seemed mundane to me. Nothing eventful; just typical. But what truly struck me as odd is how they had seemingly put their husbands on some fiery, charred pedestal. Some referred to their husbands as "My Fireman" or "My FF". They shared about frustrating days with children and step-children, calls from their husbands, and problem-solving tasks that appeared mundane. Wives freaking out because of lost batteries and husbands debating wether or not to come home to find the batteries..........This is what I stumbled upon. I wanted to know more about them and less about the deification of their husbands. But to be honest; in some unhealthy and deviant way, I couldn't get enough of it!  I poured over and trolled for blog after blog and there was no shortage of sappy prose. It was hilarious to me! I couldn't relate in any way to any of these women. If it did anything more for me than be my personal internet literary Real Houswives (totally watered down), it brought up questions about myself and where I fit in this lifestyle.

Do I not relate to these women because I am Christian?
The FF life is not my life; it doesn't define me. I try very hard not to deify my husband. I could care less if I never had a fire-wife friend. I like the friends I have and I don't need a "firewife" to identify with the issues that exist for me as a wife and mother.  I strive to live my life for Christ; trying my best to follow Him. But I have observed, in my husband's short tenure thusfar, that many people live for this culture. All of their friends are fellow firemen, and all of the wives friends are fellow firemens' wives. These women wear cutsie gear that brands them and attend firewife conferences and join firewife forums and become members of firewife websites. They put on formals (like a return to high school) and many other things I'm sure I've not been made privy to just yet. But, many fireman and their families are Christian. So, I'm not sure if following Jesus is the separation I feel from these women.

Is there something wrong with me because I don't pine over my husband when he's on his 24?
The women whose blogs I read seem to worry incessantly about their husbands when they're on shift. They miss sleeping in the bed with their husbands. They don't watch the news because of the stress of seeing a fire their husband may be fighting and possibly hearing/seeing bad news. Ok. Those things are legit and there is definitely an element of danger to a fireman's job. But I love hearing my husband's stories! Some are funny, tragic or heart breaking. I can see the grief on my husband's face when he tells me of a cardiac arrest who didn't make it. How he was straddled over this man pointlessly doing chest compressions because this poor soul was more than dead. My husband was visibly pained describing the look on the patient's coworkers faces as they rushed him out of the office building where he had just arrived. I'm sure that man didn't think he'd be leaving so soon.  

I like being there for my husband to listen to his stories; I don't want him to bottle those things up or feel when he gets home he has to put on a front about his emotions. So I stand in the kitchen (that's where we usually end up in the mornings when he gets off shift) and laugh with him when he talks about "my foot hurt" stories and give him a hug and let him be sad when he tells of cardiac and stroke patients that didn't fare well.

Regarding the whole bed thing, I like sleeping spread eagle in my bed when he's on 24. That's all I got to say about that.

 I don't worry about my husband. I don't fear his profession. I don't spend endless nights up thinking about if I'll see a fireman other than my husband meet me at my door with bad news. I can't do that. 

If I'm being honest, the fears I have are little creeping fears in the future. Will my husband have a healthy back or knees in 15 years; or will he be considering cortisone injections or surgery? What about the increased likelihood of prostate, thyroid, or lung cancer? How many firefighters deal with those issues?  I worry that my husband, after a long and successful tenure at the fire department may one day have a heart attack at a desk. Those are the types of fears I have. But I pray (just to clarify, not those sappy recycled prayers I see plastered all over those FF wife blogs) for my husband's long-term health and our long-term marriage. I pray for well-adjusted children and against cancers and heart attacks and worn-down bodies. I pray for my husband's mind. I pray he won't be traumatized by what he sees. I pray for good solid men of Christ to come around him when he's on shift and that when I'm not around he's being encouraged and encouraging others about the freedom Christ has supplied in his life.

Are there others out there like me?  
We are all searching to belong. Even me. I don't belong to this subculture. I don't feel folded into this community. I don't feel alienated but I don't have much in common. I know my one ff wife friend is similar to me. We've actually had dramatic readings of other FF wife blogs and laughed until we were pink in the face then laughed some more. She gives me hope that there are more of us out there but I've yet to meet them. Please, let me know if you exist. I'd love to chat. If you are similar to the firewives mentioned above, I'd love to chat with you too and understand you better. 

Fiery Wife