goodness

so here's the scoop.

big stuff first...

Jack and daddy returned from a two day trip to Shriner's Children's Hospital in St Louis this last Friday night. The report was good. The doctors were pleased with his joints and range of motion. They didn't see any inflammation in the knees or feet and this is good, good news. Although I was hoping to be given the ok to take Jack completely off of meds, we were told to lose only one of the last two. I am definitely pleased about this, but secretly was a little disappointed. Because JRA can move into the eyes, Jack is checked regularly by an opthamologist. Surprisingly, they did find inflammation in Jack's right eye. We were given a prescription for eye drops and must check in with a local eye doctor within a week to check for progress. My momma heart broke just a little when Daddy called with the news, but he was very encouraging and feels, after speaking with the doctors, that this is going to be completely healed.

Overall good.

Fireman status: as of a few weeks ago we thought he was going to lose his fireman job. bummer. The negotiations between Mayor and Union had been going on for some time and we knew it was a possibility. However, when it comes down to it... it's a different story. I know we would be fine. I know our God is mighty and faithful to us. But with all that was going on that week, I felt my ankles being pulled into a quicksand of gloom. That same week, we were burglarized. Perhaps the most violating experience of my life. Someone was in my house. Uninvited. Stole my stuff. Rummaged through my cabinets and drawers. Left mud and glass all over the house. Left my back door open all day. And I have to say, I was mad. I was ready for them to come back and let me take the crowbar they so thougthfully left behind, to their knees and other precious bits. They took my computer, aka my lifeline, and my new guitar the fireman gave me for Christmas. I lost a lot of sleep and cried for days. bitterness. unease. broken. frustration. frightened. desperation. All good words to describe my feelings. Yes, they stole my joy and my security (and my photos and music library).

But here's the goodness...

My mother stepped in to show her love and offered us a computer.

My friend gave me her old, beautiful guitar.

I got a random check in the mail for a 401K I had been paying into all year at the Gap (unknowingly) and it covered the replacement of the computer.

And Calvin still has his job.

How good is that?

Good.

very, very good.

So we are living out life in Tulsa, OK. Still trying to discern what's next for us. But in the meantime, life is sweet and good.

update

so many things have happened in the last month. Back from Scotland. wonderful.
completed my first craft show. exhausting. and now I am out at my in-laws house as they have left the country and we are the hired house sitters. very official.

I have been crafting and crafting and as I work, my mind spins. lots to say. my spirit is weary, but in a good way. I have been creating and working and while my fingers are busy, my back aching, I am thinking through what my spirit is whispering in my heart.

I have been brought to my knees many times this last month, over joy and sadness. There is a lot of both out there, swirling and sloshing about. I think of my own sorrows and how it is rooted itself in my thoughts and moods. There are many dark days, filled with unknowns and doubts. I think of what prayers have been offered and what tears have spilled down my cheeks and I wonder where God is when I need Him. So many people have so many opinions: foods to avoid, supplements to take, scriptures to post all through my house and say aloud over Jack; prayers to pray and saints to hang in his room. Thanks for all the advice. But really, I am weary of it. It just adds to my frustration and feelings of guilt. What have I done or not done that would have brought healing to my baby? I know people mean well, but it seems absurd to me to offer advice like this to a mother who has prayed the prayers and read the scriptures and already wonders why I don't hear answers and see wholeness. There are times I wonder if his troubles and God's lack of intervention in the way I request is a test for me, or a punishment. My sins have fallen on my child, unfairly.
This situation recalls the feelings I had growing up. I heard that that my salvation isn't a result of my good works, yet I lived in mortal fear of damnation because of my imperfections. As if my salvation would be yanked from me because I ran a stop sign or called my sister a name. That because I made a screw up, God was just waiting to pounce and throw me into the fire. That I would be punished, even today, for my sins committed yesterday. And if I could pull myself together and live blamelessly, I would be granted favor and rewards.
enough of this for now.

Jack is doing better. He is walking. He is running and he is jumping. He tires on long walks and his feet are stiff in the evenings. He is still highly medicated. He still needs prayers, reminding God of a precious, blonde-headed pistol who needs his body freed from arthritis.

Jack

Here's the latest...
Jack and Daddy took the trip to Shriner Hospital in St. Louis last week. They hitched a ride with the sweet men from our local Shriner Temple.
Bright and early the following morning, Jack saw an opthomologist and then our team of rheumatologists. Jack's eyes checked out fine- a good thing since the inflammation that comes along with arthritis can move into the eyes and cause serious damage.
The rheumatologists were pleased with Jack's progress. Considering the state Jack was in last Christmas verses now, he almost seems normal. The steroid rounds did their job and helped knock down the swelling and inflammation in his feet and knees. But still, there is lingering stiffness and swelling. We are upping the chemo drug to combat these stubborn symptoms and if a couple of months on the higher dose doesn't work, we will begin steroid injectionis into Jack's feet and ankles.

I am very hopeful that all traces of arthritis will be gone someday soon. It is only occasionally that Jack's limp will reappear and it reminds me that he is unwell. It jolts me back and I catch my breath. I forget that he may be suffering from aches in his joints, possibly on a daily basis.
His vocabulary is slowly increasing and he is delighted when we understand him. He has a sweet, happy heart and loves to play and wrestle. He is such a boy! I love to watch his "manliness" because it is purely instinctual. He is surrounded with girls and dress up and highheels and lipgloss, yet he wants to stomp and throw and pound and make firetruck sounds. I love how his little ears perk up at the sound of the trains and how he runs to the front window to watch the garbage men load the truck. He will yell, "a choo-choo" or "a twuck" from the backseat until he is acknowledged. I love it.

Sweet, sweet boy. So beautiful. So perfect.

the unexplained: part 2

so the limp has gone away.....

Not sure why or how. I have enjoyed two days of watching Baby Jack run like mad through sprinklers, fields of clover, and my back yard. He is unstoppable and maniacal. I am surprised by his energy bursts and his inevitable crashes.
He comes in waves. I guess with a disease like this, and necessary meds, I have learn to live in the peaceful moments and tirelessly tread the rough waters of the lows.

I was listening to my friend talk about her new baby, how easy and congenial he is. My spirit took a plummet as I remembered Baby Jack as an infant. There just wasn't a sweeter baby. He was content and peaceful and easy going. He was a great sleeper and eater. I don't remember ever complaining about him- maybe I did, but I really don't remember anything but sweetness. I could have just eaten him.
So listening to my friend brag on her baby made me ache. I was overwhelmed with all the feelings I have about Baby Jack. He is so frustrating and wild. He is defiant and his behavior is embarrassing. Some days I just want to get away from him. I am worn out with being rammed and pulled on. My legs are bruised. I feel layers of guilt about how I feel. I don't want to not want to be with him. I want to be patient and long suffering and loving. I want self control and tenderness. It seems the only time I can croon over him is when he is asleep. He is still. His breathing is even and rhythmical. He looks so precious and whole.

My sweet, sweet Baby Jack.

Barn Raising

"On an otherwise ordinary night at the end of September, some friends came over to watch the lunar eclipse, friends whose two-year-old daughter Olivia had been diagnosed nine months earlier with cystic fibrosis. Now, out of the blue, the family has been plunged into an alternate world, a world where everyone's kid has a life threatening illness. I know that sometimes these friends feel that they have been expelled from the ordinary world they lived in before and that they are now citizens of the Land of the F*#@ed. They must live with the fact that their younger daugher has this disease that fills its victims' lungs with thick sludge that harbors infections. Two-week hospital stays for nonstop IV antibiotics are common. Adulthood is rare.

Watching Olivia watch the eclipse of the moon, I suddenly remembered New Year's Day, seven months ago, out at Stinson Beach with Sam and Olivia and her family. It was one of those perfect northern California days when dozens of children and dogs are running on the beach and pelicans are flying overhead and the mountain and the green ridges rise up behind you, and it's so golden and balmy that you inevitably commit great acts of hubris. Olivia seemed fine- happy, blonde, tireless. Just a few days before, her parents had taken her to the doctor for lab work, because her colds were always so severe. But she didn't have a cold on New Year's Day.
Then two days later he called with the news that she had cystic fibrosis. Now, seeing her the night of the eclipse, her upward gaze of pure child wonder, I find it both hard to remember when she wasn't sick and harder to believe she is.

At first, after the diagnosis, we were almost too stunned to cry. Olivia's family has a tribe of good friends around them, and everyone wanted to help, but at first people didn't know what to do; they were immobilized by shock and sadness.
By mid January, though, I had a vision of the disaster as a gigantic canvas on which had been painted an exquisitely beautiful picture. We all wanted to take up a corner or stand side by side and lift it together so that Olivia's parents didn't have to carry the whole thing themselves. But I saw that they did in fact have to carry almost the whole heartbreaking picture alone. Then the image of a canvas changed into one wall of a barn, and I saw that the people who loved them could build a marvelous barn of sorts around the family.
So we did. We raised a lot of money; catastrophes can be expensive. We showed up. Sometimes we cleaned, we listened, some of us took care of the children, we walked their dog, and we criend and then made them laugh; we gave them a lot of privacy, then we showed up and listened and let them cry and cry and cry, and then took them for hikes.
We kept on cooking and walking the dog, taking the kids to the park, cleaning the kitchen and letting Sara and Adam hate what was going on when they needed to. Sometimes we let them resist finding any meaning or solace in anything that had to do with their daughter's diagnosis, and this was one of the hardest things to do- to stop trying to make things come out better than they were. We let them spew when they needed to; we offered the gift of no comfort when there being no comfort was where they had landed. Then we shopped for groceries. One friend gave them weekly massages, everyone gave lots of money. And that is how we built our Amish barn.
Now eight months later, things are sometimes pretty terrible for them in a lot of ways, but at the same time, they got a miracle. It wasn't the kind that comes in on a Macy's Thanksgiving Day float. And it wasn't the on they wanted, where God would rach down from the sky and touch their girl with a magic wand and restore her to perfect health. Maybe that will still happen- who knows? I wouldn't put anyting past God, because he or she is one crafty mother. Still, they did get a miracle, one of those dusty little red-wagon miracles, and they understand this.
(That night, the night of the eclipse) We stood outside for a while longer, talking out this last flare-up, how frightened Sara had felt, how tired. And I didn't know what to say at first, watching Olivia go chasing after the big kids, coughing. Except that we, their friends, all know that the rains and the wind will come, and they will be cold- oh, God, will they be cold. But then we will come too, I said; we will have been building this barn all along, and so there will always be shelter."

I wept when I read this chapter from Anne Lamott's book, Traveling Mercies. Her incredible gift of writing resonated so deeply within me. She is writing exactly how I feel when I think of the loving shelter our friends and family are giving us through these last months. Oh, that I was that gifted to be able to articulate the feelings swirling in me. I know that JRA is not life threatening. I know this. But everything has tipped and shifted and my feet haven't quite landed in a spot where I know what to expect.
So I want to say thank you, dear ones, for holding me up when my legs and my spirit give out. Thank you for extending grace when I totally flop as a person. My world has shrunk and swollen and blurred and the constant, the saving force, has been the mercy extended and love shown.

open mouth, insert foot

I have this uncanny ability to say inappropriate and ill timed sentences. I kick myself for it. I feel really bad about it. I don't want to be the girl that people avoid because something ugly and hurtful pops out. And I don't want to always feel tense and unsure, fearful of the involuntary words slipping past my monitoring system. I don't remember being like this before. I always considered myself as tactful and reassuring. But recently, I feel like I need to apologize to people before I even venture in to conversation- just as a precautionary measure.

Ug, I could just wash my mouth out sometimes.

I have been feeling like a bad friend lately. I don't feel like I have enough energy to go around or time to share with the people that really matter. I can't get on the phone for more than 5 minutes without someone under 3 feet tall requiring my urgent and necessary attention. I am pulled emotionally in all directions and it is exhausting. I am afraid of what people must think of me.

I feel very distracted. I know it's normal and I should cut myself some slack. I have been up to my ears in projects and have a very needy and temperamental toddler now. He is so very demanding. I am not sure how to deal with him effectively and most nights I crawl in to bed feeling guilty and depressed. I am not equipped for this job. This child challenges what little I thought I had figured out. I am not sure how to discipline with love and grace when I am losing my mind and my patience.

I am reminded of his illness with each of his uneven steps. The sound of his labored gait is a dead give away and my heart aches to know if I am doing the right thing by him. I wake up each day saying, "today will be the day that I don't lose my temper." But more mornings than not I am crying before I leave the bed. He is crazy and out of control. He uses his body as a ram rod and his head as a sledge hammer. I feel physically abused by the way he throws his weight around. He doesn't necessarily do it out of meanness- just wildness. Oh how I wish I could tame him- if even a bit.

The limp is still there and now it's progressed in to something a bit scarier. He is dragging his foot and it's back to the odd 45 degree angle. I roll this around and around and feel the anxiety and frustration pounding in my skull. I wish he could talk and explain it all away. I want him to tell when and where exactly he feels the pain. I want him to tell me when he steps in a hole and twists his foot, just aggravating the problems that already exist. I want to be on top of his illness, one step ahead.

But instead, I am floundering around, stressing about tomorrow, wishing I could control my temper. I wish I could just close my mouth and put one foot in front of the other.

side effects

I am having to make a checklist now of all the meds and how often to administer them. Here's what I have so far:
Iron- 3 times daily
Folic Acid- half a pill, ground, mixed with orange juice once daily except on Methatrexate day (Thursday)
Naproxen- twice daily
Methatrexate- oral, once weekly
Enbral- injection, once weekly (I refuse to give this one. I will be running Baby Jack up to the Fire Station to see daddy on Thursdays)
Steroid- once daily

Does this sound crazy to anyone else?
On top of it, I can expect diarrhea, weight gain, aggression, appetite surge and extreme thirst, susceptibility to catching illnesses due to a compromised immune system, bloating and puffiness (aren't we trying to rid the puffiness?), sleep issues, possible hair loss, and a slew of other things I don't even want to think about.

Last night we were up for 4 hours with vomiting. And we just kept asking ourselves, "is this because of the medication?" How are we suppose to know when he is ill or it's just a side effect of this enormous medicinal cocktail?

I called St Louis this morning and spoke to our nurse. She is so nice (although she gave us a thrashing for not immunizing Jack.) I told her about his crazy behavior the last few days- tantrums like I have never seen before, fidgeting, and sleep walking. She told me that this was normal, expected behavior due to the drugs racing through his little body. But just because he is ill and medicated, doesn't mean I shouldn't and can't still set boundaries for him. When he screams for 30 minutes, turning red and sweaty, thrashing around on the floor and coming close to vomiting and hyperventilating, it's just the medicine "talking" and to keep that in mind. At the same time, I can put him in time out and explain that this is inappropriate behavior. Yeah, right. Sounds like a plan.
She did ask me if I was seeing any improvements and I have to admit that we really are. So there's the catch.

It's going to be a long summer, I think. I am kind of feeling sorry for myself today. Can you tell? I think any friends we have might not want to be around us unless we can hire a babysitter- and that might be short-lived since one tantrum could make them decline any more evenings alone with Baby Jack.
In fact, I would like to decline evenings alone with Baby Jack. He is exhausting to be around. I had to send out an S.O.S. to the fireman yesterday that if he wanted to see his son alive he needed to meet me at the car and take over while I went inside and locked myself in the bathroom. (Have I mentioned that I love this man? He understands. He doesn't make me feel bad for chickening out on the injection or occasionally wanting to huck Baby Jack out the window. And he does all the clean up when the vomit monster emerges from one of our children- I sit in the corner, rocking back and forth, paralyzed at the sight and smell.)

I am tired of cleaning up nasty, smelly diapers- the kind that make me choke and throw up a little in my mouth. Jack isn't afraid any more when I come in the room with a bandanna tied around the lower half of my face. I think he thinks we are playing "Cowboys and Indians" when all I am trying to do is not lose my morning coffee. There is something absolutely sickening about "iron" poops.
I'm tired of being irrationally mad at people. Like at the friend who told me when Jack broke his foot that everything would be fine. "Just wait and see. Before long, he will be up and around and better than ever." Still waiting on that one. And. although I KNOW it doesn't makes sense, I feel cheated and that it's her fault for setting me up for this huge disappointment.
I am tired of hearing my girls being terrorized. I hate that I have to explain to them that Baby Brother can't help it if he tries to bulldoze them and that they have my permission to lock their bedroom door to escape him. (Anyone want to come over for a play date?)
I realize that I am suffering side effects- like second guessing everytime he doesn't eat or eats too much, is constipated or has diarrhea, has fever, sleeps a lot or not at all, if I should spat his bottom or not. Do I discipline him differently since he is ill? Absolutely. Should I? Absolutely no idea. Can I help it? Absolutely not. It is always in the back of my mind.

I wonder if I will come to a point when I don't look at him and see the disease. Will I be able to see Jack and not 'Jack with JRA '? Will I ever feel like this is normal? Will I get used to this?

Identity Crisis

the fog is lifting.
I have been in a funk- for a very, very long time.
I have no idea when it started.
I feel better everyday.

So what does that mean about me? If I let the sunshine in to my soul, where does that take me? It could turn me inside out and I don't know if I am ready for that. I have this space, this private place, that is hurt and hidden away. It's a part of me- it's who I am at the core. So how do I move on from who I am?
I am a victim, people. So what does it mean about me if start feeling better and don't feel victimized anymore? It's like starting over and that's scary. Would I be one of those "happy people" that are one step from the "happy place", AKA the insane asylum? I am processing, processing. I am hovering outside of myself, wondering what it means to be free. If I am truly moving on then I don't need to talk about the baggage anymore. I don't have to remind anyone of how hard my life has been and how mistreated and misunderstood I feel. I won't need the feelings of satisfaction and gratification I get when I see the sympathy in my listener's eyes- I won't need them to think I am pathetic and sad.

So here I am, feeling better than I have felt in a really, really long time and I don't know what that means. My bubble has burst and I am standing at a bus stop in my underwear. Which clothes will I choose to put on? And what bus am I going to take- and to where?

I do understand that tomorrow I might wake up and feel the weight again. But right now I am in nesting-mode, hoping to park myself and make myself comfortable for a while. And yet there is an uneasiness, a waiting for the bomb to go off again.

Who am I and where am I going?

If I am free, why am I so confused? Why do I feel so naked and vulnerable?

I started this post 2 days ago and didn't quite feel I had drawn any conclusions. So I have been sitting on it
.
Well, the bottom did drop out again, the bomb went off.
The call came through and Baby Jack has had a second diagnosis- the confirmation that he is indeed ill and suffering from JRA. I was waiting, hopeful, that this had all been a misunderstanding- that our doctor had been presumptuous and hasty. But he was right. Am I saying this finally? He was right.

I am in denial. I don't want a sick baby. I don't deserve this. Jack doesn't deserve this. He is innocent.

I called my girlfriend this morning to share the news and her question was, "how is your heart?" My, what an insightful (and rarely asked) question. She knows. She knows because she has a baby that suffers. Even over the phone I knew she was holding on to me. I am in fetal position today and she wrapped herself around me, protecting me from the elements and flying debris- sheilding me for a moment from life and letting me just rest in this new realization. She helped my world stand still for 5 minutes and allowed me to lose it. Thanks, M.
So how am I? How is my heart? It feels broken. Today, it's in pieces.

I have to be honest, it's really, really hard for me to give the meds to Baby Jack. I have a dread and resistance. It's a feeling I can't explain or control. I am reluctant to pump his body full of synthetic chemicals. It goes against my conscience. And now we will add on two additional drugs- injections. I am going to have to get over myself. Six medications. We have been on a four drug regiment for months now and with little results.
I dread this.

helplessness

Ever had a day when the bottom dropped out from under your feet? When your stomach rolls over and no matter how embarrassing it might be, you think you might lose your lunch all over the stranger next to you?

I had one of those mornings and now I am just exhausted from the effort it took to hold myself together the rest of the day. But what can you do when there's laundry to be done and meals to be made and children to chase after? Now they are nestled all snug in their beds and I am left with visions of helplessness dancing in my head.

My baby, sweet, sweet baby has been diagnosed with JRA. I know this is not a fatal disease, but no matter how often I remind myself of this, I am overcome with fear and dread and sadness. My mind runs like a banshee, with lists of things he won't be able to do. I wonder if and when he will pull out of this. I try to wrap my mind around the pain he must suffer from daily and I want to shut down and crawl in to bed and pull the covers up over my head and hide.

I am afraid of the side effects and of what will happen if we opt out. There is nothing I can do to heal this little, innocent person. I stand wringing my sweaty hands and wrestling with God over why MY child had to have this debilitating illness. Why?? What will be accomplished through his pain and suffering? Is this a test? Am I going to walk upright, triumphantly down this path or skulk in to the nearest closet and lose myself?
I feel worn out and a little angry. I am more sad than angry, but I know it's just lurking around the corner, waiting to devour me for a time. I wish I could sleep a deep and beautiful sleep and when I wake this would have all been a nightmare, forgotten by the close of breakfast.
Sometimes I go in to his room, ever so quietly, and watch him and smell him. I pet his glorious hair and wonder why I was given this angel and how long he will be mine. I stroke his cheek and marvel at his lashes. I kiss his lips and his nose and his ears. I weep over his misshapen feet and swollen knees and try not to choke and wake him.

Am I doing the right thing for him? Am I sensitive and compassionate? Am I aware and patient? Am I long suffering? I can't say that I am. I am impatient and angry and sinking in the quicksand of grief- gasping and grasping and fighting to find a root of deliverance for Jack and for me.