It's Official

#4 has Juvenile Rheumatoid Arthritis.

We saw a nationally recognized expert this morning.  She was kind and knowledgeable. Unlike all the other doctors we have seen up to this point, she knew what was going on the moment she saw our girl.

"She has a sausage toe," she said.  Then, turning to her medical student, she pronounced, "That's classic of psoriatic arthritis."  I liked her no nonsense style.  She wasn't overly blunt, but she didn't try to soften anything either.  (I find that reassuring.)  She also showed us that it had spread from 2 joints to 4. (Darn it.)

#4 is going to need a weekly injection to try and manage her disease.  (There is not a cure, only management.)  Someone is going to have to give her that shot here at home. (One, two, three..NOT IT!)

That's it for today.  Through the grace of God, she was able to be seen a week early by the most knowledgeable person who could see her.  There is a plan.  It's not a fun plan, but it is a plan.  Hopefully within three weeks, it should begin to work.

3 1/2 Time Outs Tuesday #5?

1.

My eldest son made bread yesterday.  I told him to be sure to follow the instructions to the letter or it would not rise, as yeast can be tricky to work with.  He completely ignored my advice and just poured the ingredients into the bowl willy-nilly.  I smiled at the lesson he was learning about the importance of following directions.

The bread was perfect.  The instructions don't seem to matter.  He laughed out loud when he pulled the loaves from the oven.  I'm not sure if his joy was from the sight of his perfect bread or from being right.

2.

I hate it when I write something that makes total sense in my head and then ends up confusing people about what I'm trying to say.  I did that yesterday.  I tried to clarify in the comments, but I'm not sure that was clear.  I'm considering taking it down because of it.

I like how when you have a sick kid or turmoil in your life no one says "What the heck are you talking about?"  They just let you go on being crazy by yourself.  I need to find a way to use that for something better than bad blog posts.

3.

One of the people I love best in all the world was here last weekend.  The Girl in the White Minivan and her beautiful miracle children came to visit.  It was only 3 days and definitely not long enough.  She just needs to move here.  I told her so and she laughed.  Her husband is in the military and they've moved every summer for the last 5.  I don't think he'd notice this summer if he got to the next duty station and the rest of the family got as far as .....let's say Dallas just for fun.  They could all just detour here for a year.  It would be the best year ever!

3 1/2.

Just heard from some OKC friends of ours that our tenants are destroying our house.  I'm kinda over bad news.  If you have any more for me, can you please go tell someone else instead?  Thanks.

Praying Like Pagans

"I've started a novena so that God will make her knee better..." I explained to my eldest son this weekend.  We were discussing the things and prayers we were offering to God for the health of his little sister.

We were going about it all wrong.

This Sunday at Mass, the priest said in his homily, "If you are fasting so that God will do something for you, you might as well be sacrificing bulls to Jupiter.  You, my friend, are praying like a pagan."

There is no quid pro quo.  There is no magic formula.  If I do "X" it doesn't mean that God will do "Y".  Who exactly do I think is in charge here?  Me?  No way.

There are no deals with God. It doesn't work that way, and shame on us for trying to buy her good health.  We have been praying like pagans.  We need to begin again.

The purpose of fasting is not to win favors from God.  It is to show God that we place nothing above Him in terms of importance, neither food nor physical comfort, not time or self-interest.  It is an act of worship precisely because it requires us to give of ourselves.  It calls us out of ourselves and away from our own selfishness. Fasting is, at its heart, an act of trust.  We must trust God to provide for us that which we are not providing for ourselves.  It is a gift of love, trust and humility.

So, too, prayer should not be simply a means of begging.  How tired I get of my children who follow me during the day constantly begging me to let them do as the wish or have whatever they want.  If I get so tired of the steady stream of nagging, how much more tiresome it must be for God.  After all, I have a history of forgetting things my own children ask about (like time on the computer or an extra cookie.)  God, however, has never forgotten me.  Why do I feel the need to constantly remind Him of the things that I need?

I have only to look at the examples within my own home.  It is not the nagging child who pleases me, but the one who shows his love for me by doing what I have asked of him.  Yet here I am, child of God, haranguing my Father for the things I have already requested a thousand times.

God is a parent who doesn't make deals.  There is no trade off of novenas or fasting in exchange for boons.  (I get it.  It's the way which we parent in our own home.) I need to stop bartering for blessings.  I must stop praying like a pagan and only remember that I am His beloved daughter, and that He is all goodness and mercy.  I need only to trust in Him, tell Him of my needs and then get back to the business of being obedient.  He will give to me all that we need in His time.

Whether she recovers or not is in His hands.  No deals.  No bargaining.  Just trust.





P.S.   It's not the asking, it's the "I'll do this so...." and the "I'll do this if..." Just making sure I'm clear.

The Thing I Can't Say Out Loud

I will not say bad words.

I will not say bad words.

I gave them up for Lent, so I will not say the words I so badly want to say.  I'm trying to not even think them.

When #4 was at Children's Hospital, I learned that the big fear was that all this swelling would act as fertilizer to the bones around it. Those bones would grow at unpredictable rates and cause deformities in her little body.  I asked about it and was told that this is a very rare occurrence so I shouldn't worry.  Kids' bones either grow weirdly when there's long term swelling or they don't.

Then we saw the orthopedist today.

Sh....dang it.

The x-ray of her foot shows  that the bone in her swollen toe, swollen for almost 9 weeks now for those keeping track, has increased in width by approximately 50%.  She's one of those kids.

F.....darn it.

Her knee has been swollen now for almost 4 weeks.  How long before it, too, starts to grow?  I don't know what the cut off is, but I know there's nothing being done to actively stop it.  While the doctors search for answers and the rheumatology appointment looms still 2 weeks in the future, her body is rebelling against her NOW.

She's losing range of motion because of this wait. There are new problems being directly caused because of the waiting which will necessitate physical therapy at the very least.


SHE'S 7 YEARS OLD!!!!!!!!!!!!!!!!!!!!!  She's my baby.  9 weeks ago her body was normal.  5 weeks ago she was running and playing.  Today I had to carry her upstairs because her leg hurts so much.  Today she asked me if it would be hard to get a wheelchair because she'd really like one.  It would be easier for her.  She's 7 and asking for a wheelchair.

D............hmmmmmmmmmmmmmmmm.

I put on my poker face so that she doesn't see my worry.  I have to protect my children from seeing the fullness of my fear.  I will not say those words, but I can't stop feeling them.

Accepting the Challenges of Lent

As millions of Catholics around the world mark the beginning of the Lenten Season with Masses and ashes, we take a moment also to reflect upon our lives and prayerfully consider how we can draw nearer to Our Lord through fasting, prayer and alms giving.

When I was a girl in the 1980's there was very little focus on the purpose of the Lenten Season, a casualty of the poor catechesis of the last 40 years.  We were taught instead to give up chocolate every day and meat on Fridays.  It was just one more ritual in a life which was filled with them.  My life was filled with rules which I didn't fully understand, and this seemed almost more like the initiation ritual for an exclusive club than a religious observance.

Now that I am grown, I approach Lent with a new perspective.   It is a time of austerity for which my soul aches every year.  The sensory overload of Christmas and the New Year winds down in a frantic pace as we approach Mardi Gras.  When Ash Wednesday arrives, I am ready for the rest from feast days and Ordinary Time.  I am ready for the challenge of self sacrifice and the invitation to draw myself ever closer to the Sacred Heart of Jesus.

This year I had planned to again give up Facebook and sleeping in and to attend daily Mass.  This was my plan.  The more I prayed about it and opened myself to listen to God's plans, the more I felt led to fast from other things.

fasting
I am a woman with an Irish temper.  It flashes hot and loud and I am a yeller.  I also have picked up quite a potty mouth since moving to Dallas.  The traffic here is horrible and all too often I say words which I ought not to say.  This year for Lent, I am fasting from volume and cursing. In changing my tone I will also change my content and praise my children at least 5 times a day each without attaching a criticism to them.  Thinking of the sacrifice that my Savior made for each of them shames me when I think of how I sometimes sound when I talk to my children. My family deserves a mother and wife who is kind and in control of herself.  I need to speak to them in the calm affectionate tones I want them to remember, the voice of the mother God wants me to be to them.

prayer
I have gotten very lazy in my prayer life and do not speak to God as often as I should.  I will still give up my lazy mornings. Instead of Mass, I will pray a rosary every morning, dedicated each morning to a different one of my children.  There are so many of them that it is all too easy to think of them as a unit rather than as individuals, so I will pray for them one by one.  I have asked each of them to make a list of intentions for me and I will spend Lent praying for the things which are important to them rather than those which are important to me.

almsgiving
We live in a home which is filled to the rafters with mounds of stuff.  Not things which are important to us in anyway, just things which we own.  We have a surplus where others have great need.  Because of this, I will be taking a grocery bag of donations to the local charity thrift store every day.  I don't worry that we will have enough to give away, but that we will still have a surplus when Easter arrives.


I intend to spend the next 40 days striving to be the woman I am called to be. This family is a gift He has given to me.  It's time that I treated them that way. 

The Gifts They Want to Give

When I was 22 and gave birth to my first child, I had very definite ideas about how I wanted to dress her, how her bedroom should look, and opinions about every minute detail of her life.  She was my baby and there was a part of me which feared that sharing the decisions about what was purchased for her in some way diminished my role as her mother.

15 years and 7 babies later, if I could go back in time and talk to my much younger self, I'd want to say "Let people give your children the gifts they want to give them. Let them dream fanciful thoughts for your babies.  Share the joy of your babies with the people who love them."

#7 on Aunt K's quilt

When we discovered that #7 was a girl, I designed in my head the perfect bedding.  I envisioned pink and funky, modern and bright.  My husband's sweet Aunt K is a seamstress and offered to make anything my heart desired.  I found the perfect fabric and sent it to her.  A month later the bedding arrived in the mail.  I was delighted with the beautiful things she had made.  She was not.  A few weeks later, she called and said she had made a different quilt for the baby.  It was the quilt she had wanted to make all along.  It took my breath away.  It was even more lovely than I could have wished.  It was a gift borne of her imagination, love and talent.  It was quite simply a gift of herself.

My mother-in-law offered to buy our sweet girl's Baptism gown.  She told me to select it and she would write the check.  How did I want to dress our girl on this most special day?  I thought about it for a few days, and it was honestly too much for me to deal with in the midst of moving, homeschooling, pregnancy and life.  Did she want to choose it?  She is the mother of two sons who always wanted a girl.  I told her to pick what she had dreamed of dressing her own daughter in some day.  It was completely up to her.  I asked for no details and gave no guidelines except length and color (white, of course!).   Last Friday, I was shown the culmination of the planning and love of both of my husband's parents for our tiny daughter.  Crafted of white silk dupioni and embroidered with pearls, it was a dream of a dress.  My in laws dream.  It had the puff sleeves my father in law blushingly told me he would have dressed his own daughter in.  The slip was made of the softest flannel because her skin is delicate and February is cold.  They didn't want #7 to catch a chill in her fancy dress.  The hem of her slip bears a Scripture verse her grandparents chose especially for her.  Instead of a traditional blanket to wrap her in, they opted for a fantasy of a white cape, embroidered with her name and Baptism date and lined with the softest velvet imaginable.  How tiny my thoughts were in comparison to their vision.  They could have bought the gown I picked, but instead they wrapped her in a gift of themselves and beamed with pride as their girl became God's own.

The deacon from our old parish asked our opinions about the Baptism itself.  I left it to him, and the Litany of Saints was filled with those whose names we bear as well as those he knows have special importance to our family.  He spoke movingly of our family and found all the words we needed to hear when he wrote down what he wanted to say.

Our beloved Oma offered to make a dinner for us.  We had planned to simply go to a restaurant because we no longer live in Oklahoma City.  She was adamant that no baby of hers was going to be Baptized without a party, so she gave our daughter the gift of a celebratory dinner.  I had expected that we would arrive at her home for cake and punch, but found instead a spread of turkey and sides, a fantastic cake and a champagne toast to welcome #7 to our family.   It was a reflection of Oma's joy in the girl she loves.

I've found as #7's mom that I can let go.  I can step back and trust the people we love to make decisions for our children because they adore them, too.  When I let our loved ones give the gifts they want to give instead of just the things we request, they far surpass my expectations. When I'm in charge I ask for stuff and when they are they give the whole of themselves.  How can anything I want ever be better than that?

The Case for More Sex

****This seems really obvious given the title, but this post is about sex.  If you're not old enough, GO AWAY.  There will be something else for you to read another day.  This one's for the grown ups.****


A few weeks ago, a friend of mine and I were talking about the pressures of married life after 15+ years.  We talked about the demands of children, our husbands' work schedules, and our ever growing to-do lists.  I told her how it often feels as if my husband and I are two people who are traveling in the same direction and not always together.

"You need more sex," she said matter-of-factly.

I laughed it off, thinking that she must be joking.  The last thing I want at the end of a day spent with children hanging all over me is to let one more person climb all over me, no matter how much I love him.  I need some breathing room!  (Sorry, honey!  It gets better, I promise.)

The longer I thought about her suggestion, the more wisdom I saw in her advice, so much that it's the advice I've been giving out.  Ladies, our men need more sex!  (Don't look at me in that tone of voice.  You do have time.  What kind of time commitment are we talking here? 30 minutes 3 times a week?  You've spent more time than that watching HGTV for goodness sake.)

Sex used to be a fun romp of play and spontaneity.  At some point after we became parents, we began too often to forget to be lovers.  When I'm honest with myself, I admit that I miss it.  I miss the hands that would graze across my body or the sexy innuendos on the phone.  I miss him chasing me.  I need him to be not just my husband but my hot lover, and guess what?  He needs that, too.

Where I spend my day filled with little people kissing, hugging and loving on me all day long, my husband does not.  He comes home in the evening having given his day up for us, and when he "makes his move", I often sigh or plead fatigue or headache.  He doesn't hear the message I think I'm sending (that I'm too tired and worn out), he hears that I'm rejecting him!  If he hears me reject him long enough, eventually he stops trying.  (Please don't stop trying!)

It took a few weeks of really thinking and praying about it before I truly understood.  My husband needs me to wrap him in my arms.  He needs me to be his love, not just his children's mother.  He needs to be held close to me and to feel my skin on his own.  He needs to be shown that he is loved.  He needs to feel that I love him.

I know all the arguments against more sex, i.e.  you're tired, he's annoying, you're pregnant/breastfeeding, you actually do have a headache, etc.  I don't care.  Sex is a gift you give to your spouse.  You wrap yourself around him and show him that you accept him and love him as the person who he is.  You silently (or not so silently....let that freak flag fly girl!) tell him again that he is the other half of you and that you wouldn't have it any other way.


What are you waiting for?  Put on your sexiest underthings (the clean ones without the fraying edges).  Put the kids to bed early. Then wrap your arms around his neck (arms not hands) and plant a kiss on him like you mean it.  He'll take it from there.






P.S.  I won't go into any more detail, but it works.  Chase your man around the bedroom and watch the smile that he walks around wearing all day.  (If you're home alone and you're lucky, it will be all he wears all day.)

P.P.S.  Not for nothing, it's good for you, too.  It improves the complexion, burns a few calories and puts a smile on your face that tells the world you're well loved without your having to say a word.


You're welcome.

3 1/2 Time Outs Tuesday # I forget

1.

#7 was Baptized this weekend in our Oklahoma parish.  (I miss that parish.  It's home for us.)  She cried a bit during it all, but I wasn't worried a bit. Oma said that was just "the devil coming out."  Must have been because that night she started kissing us.  No devil = Slobbery baby kisses

2.

Today is Valentine's Day and I have a tradition of giving my readers a "little Valentine."  Here it is, his head.

I still want to find the smarty pants with the label maker who pasted his name on his pate.  I'll bet that guy is a hoot.

3.

Tamales for dinner, a dozen striped roses, and red hots in my ice cream!  My husband loves me. 

I wrote him a love letter in long hand and then didn't write it on the blog. He thinks I sometimes over share and that privacy is kinda hot.  Happy Valentine's Day, Computer Guy!  That note was yours alone.

3 1/2. 

A couple different people have asked me for marriage advice this week.  I listened to them all carefully and came up with the same starting place.  Why don't you start with more

Facing Reality

I must confess that I am a bit of a hypochondriac where my children are concerned.  Their health is my responsibility.  They could live or die on the decisions I make for their care.  It makes me a little nuts.  There's not a spot that they get that isn't the chicken pox (We're all going to die!) or a croupy cough that isn't pneumonia (We're all going to die!).  I freak out in the beginning...always...and then gather my wits and figure out what's really going on with them (heat rash or allergies usually).  Then life goes back to normal and I calm down until the next spot appears (Measles!  We're all going to die!  I don't care that they were vaccinated!)

That's where I find myself with #4's knee.  I freaked out and took her to the ER.  She had an appointment with an orthopedist the next day, but the joint was hot.  I freaked out and took her to the hospital.  Somewhere in the back of my mind was a calm voice telling me that this was just my normal parenting style which usually turns out to be nothing serious and that life would go on as normal.  I waited for someone to find a bug bite or evidence of an injury, but they didn't.

We got a referral to a pediatric rheumatologist, but can't get in until March 4th.  Part of me was outraged that she would have to wait so long in pain with her swollen knee.  The rest of me was calm.  It would go down.  We'd never actually need the appointment.  It would turn out to be an injury of some kind or a weird allergic reaction to air.

That hasn't happened yet.

My husband and our sweet Oma keep telling me that they think it looks better.  I want to be reassured, but it looks the same to me.  It feels the same to her, but they are so certain.  Am I paranoid or is it like the emperor's clothes?  Are they seeing what they want to see?  How can it not be better?

We're rapidly approaching the time when all hope of an injury or freak bug bite will be past.  We're getting to the point where an injury would be healing.  I asked a friend of mine, one of those great friends who just tells the truth even when it's ugly to hear, if it looked better to her.  She gave me an emphatic "No."

Damn.

Two weeks until the rheumatologist.  Please let me be paranoid.  Please let me be a freaked out hypochondriac.  Please?

Clarification

The Obama Administration is using the "preventative care" mandates of the 2010 Patient Protection and Affordable Care Act to force religious people to provide morally objectionable contraceptive, abortifacients, and sterilization procedures in direct contradiction of the tenets of their faiths.

Perhaps it's time to review what Preventative Care is and isn't.


The National Library of Science defines Preventative Care as referring to "measures taken to prevent diseases,(or injuries) rather than curing them or treating their symptoms."

Let me simplify this a bit for you:

This is a disease  (Cholera)

This is not a disease.

This is a disease  (Measles)

This is not a disease.

This is a disease (Small Pox)

This is not a disease.

This is Preventative Care

 

This is NOT!

Agree?  Why not pass it on?  Click the Facebook "F" or Twitter "T".  Thanks!

 

Numb

There is fear.  Real. Choking. Fear.  I tell myself that it is not "of God," but I can't hear me.  There is numbness filling me and then a torrent of tears which I must hide from my children lest they become frightened, too.  I look for places to set it down, if only for a moment, and they do not exist.

She broke her toe!  That was all it was.  It was destined to be a family joke and the subject of teasing for years to come.  The toe was broken, we were so sure of it.  Until it didn't heal.  Until the swelling never went away.  Until the xrays last week showed no break and no dislocation, just pockets of fluid.  Until her knee swelled up, too.

Damn that swollen knee!

It was that knee that landed us at Children's Hospital.  It was that knee whose xrays showed no injuries.  It was that knee that was revealed to be filled with fluids which puffed it up until we could no longer see her kneecap. It was that knee which my husband had to hold her while it was drained.  And she screamed.  She screamed for them to stop and I could only sit in the corner and rock her sister and cry.  It was that knee which made them say words like arthritis and autoimmune and rheumatology.  And I sat there too numb to respond.

Crap.

Crap. Crap. Crap.

We don't even know for sure.  The not knowing triples the hurt.  I need to know my enemies and stare them down.

The  specialists can't see her for a month.  There are so few doctors for juvenile arthritis.  No official diagnosis means no treatment plan.  It also seems to mean no improvement.  Only my aching child.

Sometime soon I have to take away her childish dreams for this year.  She won a solo in her ballet recital and got to wear a purple tutu.  She can not dance on her knee.  How do I steal that excitement away?  I'm already dreading her tears.  It just seems like one more pain to lay upon her and she's only 7.  She has to stop her beloved karate at least until the swelling is gone, but who knows after that?  She just earned her orange belt and lived for Tuesday and Thursday nights.  Her dreams for herself as a grown up are largely untouched, but those childhood wishes have been reduced to "I want to be able to run."  Running? Are you freaking kidding me?  We're back at running?  She mastered that at 2.  How are we at this point?

It's only been 6 days since the knee swelled.  I've gone from long joyful prayers of thanksgiving to the numbness of one choked out word.  "Help."

You Don't Get In Trouble For That

Last night an hour after bedtime, the Computer Guy and I heard the sound of voices from upstairs.  At least two of the boys were not asleep.  After a quick game of "not me!", it was decided that I should be the lucky one to go put them back to bed. ( I'm not a fan of that.  The stairs are steep.  There are a lot of them.  It's dark at night.  There are vampires in the dark.  The usual complaints.)  As I got to the top of the stairs, I could see a light on in the bedroom of #'s 2 and 6.

"I'm going to kill them," their loving mother muttered.  "Why can't they just go to sleep like normal people?"

I felt myself getting more irritated the closer I got to their room.  #6 is only 2.  What was his brother thinking to be playing with him so late?  He's not so fun on too little sleep.

I adjusted my face into the mommy "I'm not happy and you might die" scowl and opened their door.

There in front of me were both of my sons curled up under the covers of the elder one's bed.  The two year old was holding a rosary in his chubby hands and repeating the words of his brother. "...lead all souls to Heaven, especially those in most need of thy Mercy," he said in his sweet little boy voice.

"What's going on guys?" their humbled mother asked.

#2 looked a bit embarrassed to be caught breaking rules and answered, "He was scared of the rain and lightning, so we're praying the rosary, but I can't remember the 5th sorrowful mystery."

"Crucifixion."

"I thought so. Is it okay if we finish before we turn out the lights?"

I told him yes and closed the door behind me. 

We're pretty strict at enforcing bedtimes, but praying with your little brother?  Yeah.  You don't get in trouble for that.

Prediction

"I expect to die in bed, my successor will die in prison and his successor will die a martyr in the public square".

Francis Cardinal George, the Archbishop of Chicago
(on the current state of affairs)