I kept putting it off.  I did not want to do it.  Asking for help is uncomfortable enough, but asking for money?  

I am absolutely astounded by the generosity of family, friends, acquaintances and strangers.

Yesterday, we asked for help collecting money for an ipad for Sarah.  We were able to reach and exceed our goal.  Now we have to figure out what to do with the extra funds.  I had expected to meet the goal, but I expected it to take longer- much longer- and I did not expect exceed because I figured I could update as soon as the goal was met.  It happened so fast!

We are torn between donating excess to someone who has helped us- like the Ronald McDonald house where we always stay when Sarah is in the hospital, and donating to another child with like needs.  (I don't know one, I just think we could find one.)  We will not keep excess.  Money was donated to help a kid with a need, and we will make sure it goes to meet a need.

I am a little dumbstruck.  I am struggling to find the right thing to say.  Thank you doesn't seem like enough, but everything else seems to sidestep gratitude.

We did ask, and you answered.  Sarah will get her voice for Christmas.  Thank you!  We are so excited and so grateful!  Thank you.

Sarah needs a voice

I am going to update on this post, and at the beginning so it won't be missed by any new visitors to the page.  In just a few hours, we were able to raise enough money for Miss Sarah to get an ipad!  Thank you all for your incredible generosity.

Original post follows:

My daughter Sarah is two years old.  She was born with a genetic syndrome called Apert.  It is rare and symptoms vary.  Sarah's case is pretty severe.

Typically, kids with Apert syndrome have what is called craniosynostosis- which means that the plates in their skulls fuse prematurely which can put pressure on the brain as it grows.  Sarah needed surgery to relieve pressure at birth.  We spent three months in the NICU at birth with various complications.  Since then it has been a long, bumpy road for Miss Sarah, but things are finally beginning to stabilize.

Sarah is two years old.

About a year ago, Sarah was just beginning to make words.  She was on track,developmentally.  Just over a year, with a handful of vocal words and vocab growing.  She called Dada and Mama.  She said Lala for Lily.  She even said "G'ma" perfectly clearly for grandmom.

In January, she went in for a hand surgery and came out with a tracheostomy because she was unable to breathe after surgery.  The trache has been a good thing, overall.  She is a happier, healthier kid.  While last year we spent most of the fall in the hospital with several pneumonias, this year, we have been mostly home.  Sarah even started school this year!  But, the trache took away her voice.  Sarah cannot vocalize.

At the time, it was a heartbreaking setback.  She had just begun using her voice when it was taken away.

Since then we have seen wonderful progress. Most importantly, Sarah can breathe well.  Sarah can swallow, so she is learning to take more and more food orally.  Sarah can communicate.  We learned some sign language to teach her a few signs.  Given choices, she can pick.  Like every two year old, she is very good at saying, "no" but she can also say, "yes."  She is learning.

Also like every other two year old, she has temper tantrums when she cannot get what she wants.  But we often have to guess what she wants.  As she gets older, the dynamic is becoming more and more difficult.  No one like it when their child is crying.  When Sarah is crying, I cannot always tell whether she is hurting or bored.  Does she want a toy?  A new diaper?  Hungry?  Did she hurt herself?  Key in parenting a two year old is knowing when to say no, and that is becoming a problem for us.

Since I am guessing, I may not know that I have gotten the right answer until she stops crying.  I cannot just ignore the crying, because sometimes is something important.  She is a smart girl, and as she gets smarter, the disconnect between her understanding and her communication skills widens.  She is getting frustrated.   Sarah needs her voice.

Not long ago, the best course would have been to obtain a communication device which cost between eight and ten thousand dollars.  Those are really pretty cool devices.  They speak for a child.  She uses her hands to navigate pictures, telling the device what to say.  Now, an iPad does the same thing.  We want to get an iPad for Sarah.

It is not as simple as buying an iPad.  The app is expensive, you need a case and to make it easier to use, and there are specific screen covers for adapted use.  Still it is much less expensive than the older technology, and it is more portable.  The iPad would be a dedicated device.  As much fun as it would be to get an iPad for playing (or for me!) every therapist I have spoken with stresses that for this to be an effective communication device, it has to be dedicated.  If has to be Sarah's, and she cannot use it for games-no matter how fun or educational.  If she thinks it is a toy, she will not want to put in the effort to make the thing work for her.

We have tried to resist asking for money.  Everyone has bills and budgets are tight.  We cannot complain much.  We have excellent insurance, which has paid for almost everything.  In spite of that, our budget is blown.  Hospital incidentals, like food and parking, add up quickly.  We have a roof over our heads and food on the table.  We cannot complain, but we cannot buy an iPad either.

Please help us get a voice for Sarah!

(donate button deleted.--THANK YOU!!!)

The dueling isms of the season: Secularism & Consumerism

Thanksgiving is this week and we all know what that means!  Its Christmas!!

I love Christmas.  It is a beautiful holiday!  I love gingerbread houses and Christmas lights and Santa Clause.  I love mistletoe and feel good movies.  I love fireplaces and poetry and songs.  I love gift giving and gift wrapping and gift getting.  Movies talk about Christmas magic, and I can buy into that.  Christmas is fantastic fun.

The question comes up every year.  Can I celebrate Christmas with the world without stripping this holy day of meaning?  I don't think the fun is dulled if it is shared. I don't think the meaningful intent is stolen away by people who share these traditions without the meaningful intent.

I hear the noise.  "Keep Christ in Christmas!"  The rage against Santa and generic Holidays happens every year.  This year, we are supposed to be mad at the postal service who sent out an anti-Christmas flier.

I read an interesting, but familiar, blog post yesterday about secularization.  The writer claims that if you make a kid choose between a magic man who can fly and who gives you presents and a baby, the magic man wins.  So, she is kicking Santa out.  I get that.  I disagree, but I get it.

Most Christians can talk about St. Nicholas and how he evolved into the jolly man we invite into our homes.  Most Christians can talk comfortably about the various pagan roots of various Christmas traditions without flinching.  (But let someone wish them, "Happy holidays," and wow.  War on Christmas.  War on Christians.  Persecution!)  We love our various traditions.

(Fair warning: I am about to reveal my inner grinch.)

Every year at about this time I start to get irritated.  I get more and more irritated all through Advent and right up until Christmas.

"The people who walked in darkness
have seen a great light;
Upon those who lived in a land of gloom
a light has shone." Isaiah 9:1

Advent is not shopping season.  Advent is not mini-Christmas.  We are waiting for our Lord.  We are His people, in expectant, hopeful anticipation of the Messiah.  That is what this season is about.  In our color coded calendar, Catholics can see that Advent and Lent are purple.   Purple reminds us to prepare.

"In those days John the Baptist appeared, preaching in the desert of Judea saying, “Repent, for the kingdom of heaven is at hand!”" Matthew 3:1

We are the people waiting in hopeful darkness while a giant reindeer blinks his flashing red nose and a chorus of merry elves sing, dance and jingle all the way.

We are not waiting. We are celebrating. We have decided, as a culture, to skip Advent. It is like you spot a beautiful wrapped present with your name on it, but some mischievous brat yells out what is inside before you can touch it. Yes. Christmas will still happen, and yes it will still be meaningful, but someone stole Advent, and with it part of the fun. They stole the build up. They stole the wonder. They stole the mystery.

I am raising three little girls.  I am determined to give them the gift of wonder.  Mystery and hope will mark the season, and it won't be over-shadowed by a wimpy, saccharine, echo of joy.  We will celebrate Advent so we can celebrate Christmas.

"People, look east. The time is near
Of the crowning of the year.
Make your house fair as you are able,
Trim the hearth and set the table.
People, look east and sing today:
Love, the guest, is on the way."

I am not going to take Santa away from my kids to drive home some holy point.  I am not going to sneer at the cheerful "Happy Holidays" wishes.  I will delight in the good wishes of strangers, and I'll wish them good will.  I will enjoy watching Charlie Brown and Its a Wonderful Life and maybe even Rudolf.

Thursday is Thanksgiving.  Sunday, Advent.

"Oh come, Oh come Emmanuel, and ransom captive Israel."

The world needs God.  We are always hearing about how we need God more now than ever.  We are the people of God, waiting for our Messiah.  The King of Kings will come, and we wait.  Joyfully.  Expectantly.  Faithfully.  We wait in the darkness for the light.  Advent is not just a countdown.  It is a time to prepare and reflect.  As we get ready to celebrate His first coming, we recall that He will come again.  We prepare.  Get your homes ready!  Make it beautiful!  Bring in family and friends and fill the world with song!  But remember what we are celebrating.  This is not a cute baby story.  This is the story of light conquering darkness- and it is not over yet!  He will come again.

"A voice proclaims:
In the wilderness prepare the way of the Lord!
Make straight in the wasteland a highway for our God!"  Isaiah 40:3

Advent.

This year, I am determined not to be irritated by the evincive juxtaposition of Thanksgiving and Black Friday.  I won't do it.  I won't cry foul when Christians refuse to admit complicity in the secularization of Christmas or whine about nonsense "persecutions."

This year we will celebrate Advent, because when Advent holds its own as a season to prepare for Jesus, the dueling isms, consumerism and secularism, pale like glitter next to a diamond. The story about a magic elf with gifts might trump the cute baby, but the magic elf story cannot hold a candle to the true story. The advent story. For thousands of years, the Lord prepared His people and they waited.  He taught them, and led them, and protected them, and loved them. There were wars and there were miracles, all in preparation for one great King. They wandered. They were "the people who walked in darkness."  They knew He would come.  And He came.  He came for each and every one of us.  In His perfect plan, God chose humility. And the angels, the beautiful, awesome, terrifying angels adored Him.  

Santa?  He is welcome in my home, so long as he bows before the King.  And the King has not come yet.  If Santa trumps Jesus, you are telling the story wrong.

Be grateful. Then prepare. The King is coming!

Sarah made it home.

She is beautiful and well and cheerful.  You would have no idea that it was such a difficult week.  Of course, to put things in perspective, my darling daughter was blowing kisses to the paramedics on the way to the hospital in the ambulance just after the fall.

Tuesday night  I stood in the doorway, with the door wide open waiting for the ambulance, breastfeeding a six month old who was not hungry because I knew she would be later and I would be gone.  I walked away from a very upset five year old who stoically fought tears in the arms of a neighbor. It was one of those difficult nights.  In retrospect, you wonder how you did it, but in the moment, you simply don't have time to consider how, you just do what you have to do.

The days in between then and now are all a bit blurry.  I remember calling my husband from the local hospital to make sure he was coming.  She was acting completely normal, so to be perfectly honest, when I walked in I felt a little silly.  I thought I was over-reacting!  The doctor even thought it would be a CT to clear us and we would be home in hours.  I remember the fear when the doctor came back after reading the CT.  Fear was all over her face.  She did not want me to call my husband to drop off money (as we had planned) she wanted to make sure he was planning to come to Children's.  She did not say so, but I got the distinct impression that she thought we should be preparing to say goodbye.

I remember rather foolishly wishing I had not broken my Kindle.  How was I supposed to rally our prayer warriors?  We needed them!

I remember walking into Children's just as they were about to sedate my darling girl.  I shooed them away.  She might need sedation, but give me a chance to calm her down.  She had ridden in the helicopter!  She was restrained because of risks to her spine!  She was tired and throwing up and alone in an ER.  She needed Mommy.  Maybe medicine too, but mommy first.

When we finally made it to the PICU, I remember how she changed.  Sarah was so clearly relieved to be there, it was visible.  Interesting.  Friends (ICU friends- it was way past visiting hours, and we were still medically precarious) came by.  Hugs and warmth and pillows.  They were ready.  They even had my breast pump in the room.  It was, I think, the second time I had the experience of an enormous weight being lifted before I was aware of it.  I had not realized how scared I was until I was not scared anymore.  I hope none of you need an ICU.  I pray that if you do, you find the same level of kind and competent care.

Blurry days, with tests and more tests.  Unfamiliar residents came in and out to reassure me.  Familiar nurses, fellows, therapists and attendings actually did reassure me.  (I have no complaints against the residents.  I just did not  know them, and they did not know me.)  The MRI did not show trauma to her spine.  Her behavior was normal.  Neuro checks every hour (later every two hours) were normal.

Friday, I was sure we would be there until Monday.  Saturday Sarah was discharged.  Hallelujah!

Sarah is doing very well.  The bleed will take some time to reabsorb. Surgery is off the table for a few weeks- and we will do the best we can to keep from being discouraged by that.  Sarah expects not to be alone, as she is rarely alone in the hospital, and never at night.  So, our bedtime routine just got more difficult, again, as it always does after a hospitalization.  The refrigerator is empty.  (You don't buy stuff when you have no idea when you'll be home, and by the time you get home all the perishable stuff has generally perished.

But life is good.  Back to our noisy normalish chaos.  Miss Sarah may even start school next week! God is good.

Yesterday was hard.

I believe in the power of intercessory prayer.

Shortly after I posted, Sarah started getting better.  And not a little better-dramatically better.  She just seemed to wake up!  She was around midnight last night, she was cheerful and alert.  She was pulling on her lines and tubes.  She was signing for Dad.  She was twisting around in her bed.  She was even blowing kisses and waving.  It was precious.  I left to refill my water bottle and when I returned, Sarah was looking at me with sleepy eyes and she raised her hand way up high in the air to wave.  I got excited and then she got excited and the nurse came in and we were all excited together.

I stayed up until about three, chatting with the nurse and playing with a very awake and cheerful Sarah.

I missed neurosurgery rounds- they round really early- but apparently the neurosurgeon was ready to send her home today!  She will absolutely not go home today, or even tomorrow.  All the teams have to be ready, but this is still excellent news as it means that neurosurgery is not considering a surgical intervention for the hematoma anymore.

We are on our way to wellness, with obstacles shrinking.

Sarah is not getting food yet.  They would like to restart, but restarting is always a bit of a gamble after as much tummy trouble as she had yesterday.  I hope and expect that she will tolerate food well, but we cannot plan on it.  Since we cannot plan on it, it has to wait until after the MRI because we cannot have her throwing up and risking aspiration during the MRI.

Which brings me to the MRI.  She is still in a collar.  We still think her spine is OK, but cannot be sure and an MRI is the best way to know for sure.  It is not previously scheduled and it is not an emergency, so we are at the end of the line which means late today- they are saying between five and seven.  So I suspect eight or nine.  The MRI is sedated.

Which brings me to... her blood work.  Sarah is a hard stick.  And it gets harder every time someone misses or loses an IV.  So, after a few particularly difficult days, even drawing blood for labs is hard.  I have asked them to hold off on more blood until she is sedated, since she is going to be sedated.  I am also going to push for better access if they think we are going to be here for more than another day or two.  You would think a little blood work would not be a big deal, but the numbers suck.  She has needed blood work and follow up blood work two or three times ever day and ever time it takes at least two or three (and sometimes more) sticks.  So we are talking about ten sticks a day which is unacceptable.  Why so much blood work?  It is not because they are forgetting things.

One of the tests is for coagulation.  Since this is not a common issue with Sarah, the numbers mean very little to me and so I do not remember them.  She needed FFP (plasma) which is a blood product.  Two hours after it was given, then rechecked and were still unhappy with the result, so they gave more FFP.  Now they have to check again, but after three (three!!!) unsuccessful and painful arterial sticks, I sent the doctor away to figure out something else.

Miss Sarah looks miserable, but darling.  She is still in the trauma collar and she still has the EEG leads all over her head wrapped in a very fancy stocking cap.  (The EEG did not show seizure activity, which is unsurprising wonderful news.)  She is on a vent.  Two IVs are in- one in each foot.  The blood pressure cuff is on, since they are still checking regularly.  Regular leads for heart & respirator rates and a pulse ox.  Sarah looks like a very serious ICU patient, but the truth is, at the moment, she is doing quite well and most of these things should be coming off soon.

Oh!  Rebecca took her bottle last night, finally.  And the letter "i" is working again- so this post was not nearly as frustrating as the last to type.

Prayer works.  Thank you.

Update

I will do the best I can.  My laptop is acting up.  It is inserting the letter "I" all over the place.  It seems like there could be a moral there.  In the interest of sanity, I am aiming for brevity.  Moralizing annoyance can happen another day.

Just hours after my last post, Sarah fell.  She hit her head.  For about half an hour everything seemed fine, but then she threw up.  We called for an ambulance to take her to the hospital.  The ER at Lansdowne did a CT.  At the time she was acting normally.  She was blowing kisses and arguing with everyone.  We all expected a beautiful CT and then home within a few hours.  I knew something was wrong when the previously confident and cheerful ER doctor came in looking confused and apologetic.

The CT showed a bleed.  The X-ray showed a possible spine injury.  The doctor was worried.  Worried enough to send for a helicopter to take Sarah to Children's.  Worried enough to tell me to get my husband to the hospital in a hurry.  Josh left the other two with a neighbor.  I called my Dad to meet the neighbor at my house and stay with the girls overnight.  Josh met me at the hospital and followed the helicopter to Children's.
The emergency department at Children's did a CT of her spine.  It also showed a potential spine injury, so she was put in a collar to stabilize her neck and an MRI was ordered.  They could say definitively that what they were looking at was not normal.  But they could not tell if it was normal for Sarah or if there was trauma. An MRI would show soft tissue and could answer the question.

The bleed was the top concern.  Our neurosurgery team had a look at the images and made their recommendation.  Sarah would be admitted to the PICU and she would stay for observation for a day or two.  Though the bleed was significant, there seemed to be room.  Her brain was not obviously under an pressure, so our best gauge was neurological status, and that seemed good.  She was alert.  She responded appropriately to all the nasty things that happen in these situations.  (Needles, needles and more needles: temper, tears and tantrums.)

Josh went home to be with Rebecca and Lily at 1 a.m..  I stayed with Sarah. That first night was an awful battery of tests and imaging.  So, when she was tired the next day, I was not concerned.  Night 2 she looked great!  She woke up happy.  She was signing, "Out!  Out!  Dad!"  It was incredibly cute.

But by mid-morning today, she was looking more tired.  Still, I though that it was not outside the realm of normal for her to be so tired and I did not worry.

Then we had to get her read for her MRI.  We changed her trach, her trach ties, her stabilization collar and her diaper.  She did not get mad.  In fact, she barely responded at all.  Lethargy is a neurological symptom.  Then she started throwing up- another neurological symptom.

They sent her for another CT, and though she made it down to radiology without issue, she threw up during the test.  There was no was she was stable enough to get an MRI- which is much longer and requires that she be alone- monitored but alone.  They still think the MRI will show that her spine is fine, but they need the confirmation before they can take off the collar.

This CT looked slightly better than the first.  Significant bleeding, but no obvious pressure.  Neurology and neurosurgery both want to watch and wait but they both also said we should be looking elsewhere for causes.

Neurology erred on the side of caution, and ordered an EEG.  The PICU team also ordered a slew of other tests.

Sarah has been on her vent today (usually only needs it at night) and she has needed oxygen.  She has had a fever for most of the day yesterday and overnight.  Tylenol did not break the fever, but Motrin is not an option because of the bleed.  Her blood work had a pretty normal white blood count- which should be encouraging, but isn't.  It means that infection is probably not the cause, which means we are still wondering what is and praying her brain is OK.  There are tons of other tests with various results- but the bottom line is that something wrong and we do not have a definite cause yet.

Meanwhile, Rebecca is refusing to take a bottle and Lily has to be in school ever day.  She is wound up, worried and tired.

So much for brevity.

We are peaceful, so thank you for your prayers.  It is prayer that has carried us.  We are planning to be here for the weekend, so we are planning to stay at the Ronald McDonald house.  Josh will bring the girls out here sometime after Lily gets out of school tomorrow.

Just hours before our latest episode began I wrote this in my last blog post:

"Having a panic attack was quite a blow to my courage.  Having more than one took its toll on my confidence.  I cannot do this.  And that is the point.  

"My grace is sufficient for you, for power is made perfect in weakness."  2 Corinthians 12:9  

"But we hold this treasure in earthen vessels, that the surpassing power may be of God and not from us." 2 Corinthians 4:7 

Everyone has a breaking point.  If we rely on ourselves, it is only a matter of time before we find ours.  I do not want to trivialize fears.  But it is our choice whether to go to God or "succomb unrestrainedly."  I trust my Lord, not just to be my strength, but also to help me back to my feet when I stumble away and fall down."

True, but not easy.

Tired, I am singing to myself and to Sarah:

 I heard the voice of Jesus say,
"Come unto me and rest;
lay down, thou weary one, lay down
thy head upon my breast."
I came to Jesus as I was,
so weary, worn, and sad;
I found in him a resting place, 
and he has made me glad.

I heard the voice of Jesus say,
"Behold, I freely give
the living water; thirsty one,
stoop down and drink, and live."
I came to Jesus, and I drank
of that life-giving stream;
my thirst was quenched, my soul revived,
and now I live in him.

I heard the voice of Jesus say,
"I am this dark world's light;
look unto me, thy morn shall rise,
and all thy day be bright."
I looked to Jesus, and I found 
in him my Star, my Sun;
and in that light of life I'll walk
till traveling days are done.

When Rebecca was born, she came home to a very chaotic home.  Nurses and vents and supplies and supply companies and visitors... It was not peaceful.  Those mythical dreamy mornings with beautiful new baby sleeping after eating between mom and dad in the apparently unused bed could not be further from her early reality.

While my body was recovering from her delivery, I had a lot of help but also a lot of stress.  So when I was diagnosed with and treated for high blood pressure, it was no surprise, but it made me think.  I worried and worry snowballed quickly.

Normal baby worries.  Normal financial worries.  I worried about my health and Sarah's health.  I worried about breastfeeding while Sarah was in the hospital.  I worried about  money and our bills going up.  I worried about needing a car.  I worried about one normal worry after another.  I barely noticed when my worries graduated from normal.

What if I die?  Who will take care of my kids?  Who can understand the physical and emotional needs of my girls?  What if I die when I am alone with the kids?

I had a panic attack.  The first time it happened, I literally thought I was dying.  I was not thinking clearly, and I did the only thing I could think of:  I called my sister so I would not be alone.  I made her stay on the phone with me.  I needed to know that if something happened, someone would know and make sure my kids were OK.  I could not get around the fear.  It was oppressive, physically and emotionally.  

I went to the doctor and he told me I was not dying.  I did not believe him.  I thought I must have described my symptoms wrong.  I went to another doctor.

"It was anxiety."
"It did not feel like anxiety.  I felt like I was dying."
"That is what an anxiety attack feels like."

The more I worried, the less capable I felt.  This feeling is a far cry from the insensible peace I remember and wrote about when Sarah went through some of her worst times.

Some people like to talk about feelings as though they are nothing.  "But is it real?"  It is tempting.  If I can disassociate feelings and reality, I can decide how to feel.

On the other hand, some people like to immerse themselves in feelings, as though they are the only reality.  Again, that is tempting, until it is terrifying.

Worries are real.  Emotions are real.  Problems are real.  Even the physical effects of these are real.

I have read in a few places that it is not uncommon for mothers of children with special needs to worry more than normal about our mortality.  Who would willing, aware and able, step into my shoes?

That is why I thought it was worthwhile to share.  Fear may be a rational response, but fear is not rational.  I can not reason my way out of these feelings.  In retrospect, it is easy to laugh about irrational fears.  It is easy to talk about how important it is to avoid the stress snowball.  But can I point to a specific moment a specific worry, and say where I went wrong?

The phrase, "give an inch and he'll take a mile" comes to mind.

I keep coming back to this quote from Chrysostom.  It is likely that there is a better one, but this one stuck a couple years ago and has become familiar.

"By restraining our grief, on the contrary, we both please God and conduct ourselves becomingly in the eyes of men.  For, if we ourselves do not succomb unrestrainedly to grief, he will quickly take away the portion of grief we feel; whereas, if we give way to excessive grief, he will permit us to become entirely possessed by it.  If we give thanks for it, we shall not be disheartened."  St John Chrysostom

The worry and the fear are real, but they are not unrestrainable.  I am emotionally healthy.  I am strong.  I can do this.  I want it to be true.  I can do this because I must.

Only, I can't.  Having a panic attack was quite a blow to my courage.  Having more than one took its toll on my confidence.  I cannot do this.  And that is the point.

"My grace is sufficient for you, for power is made perfect in weakness."  2 Corinthians 12:9 

"But we hold this treasure in earthen vessels, that the surpassing power may be of God and not from us." 2 Corinthians 4:7

Everyone has a breaking point.  If we rely on ourselves, it is only a matter of time before we find ours.  I do not want to trivialize fears.  But it is our choice whether to go to God or "succomb unrestrainedly."  I trust my Lord, not just to be my strength, but also to help me back to my feet when I stumble away and fall down.

Light

I was always kind of wary of posting pictures on the internet.  I enjoyed going on facebook and seeing my friend's kids, but I was reticent.  I posted pictures every once in awhile, after all, my kids are pretty much the cutest things you will find on the internet.  But I worried vaguely and I did not post often. 

Then Sarah was born and pictures were even more rare.  I was always in the hospital, so the pictures I had were rarely good.  Lighting is not good for photography in hospitals.  Even if I got good pictures, when could I post them?  I was either at home and insanely busy or I was in the hospital with spotty internet. 

Then things started to settle down.  I was not in the habit of posting them, so I didn't, at least not often.

Then an awful thing happened to one of my new friends on facebook.  Pictures of her beautiful little girl were stolen and captioned with horrible captions.  That gorgeous baby's pictures went viral captioned in ways that would make any mother cry.  I did not think of myself as being a frightened so much as being protective, but I consciously stopped posting pictures.  It did not make a huge difference, since I had not been posting many anyway.

The mother of that baby did not cower in the corner.  She stood up for her baby.  She confronted the bully who had stolen the pictures on his twitter account.  She repeatedly called him out.  She contacted Twitter and Facebook, demanding that the offensive pictures be taken down.  The bully was unrepentant.  Twitter and Facebook denied responsibility.  It was a nightmare.  So she went public.  She created an account and attracted a huge following of supporters.  She contacted local media.  She speaks proudly about her daughter and is not intimidated by the bullies. 

I was intimidated. 

My experiences with my Sarah have been mostly positive, or at least not negative.  People don't always know how to act, but I can count on one hand the number of times someone has been deliberately offensive.  (Two, if you must know.  Mom's do not forget these encounters.  Both times the aggressor backed off when I spoke up.)  What would I do if thousands of people were laughing at a picture of my baby?  Seeing someone else's baby attacked in that way hurt awfully.  It was very hard to keep believing in humanity when an attack on a three month old gets a few hundred thousand likes. 

But, there are also lots of uplifting pictures all over the internet.  The one I saw today was of an incredibly cute little girl, apparently with Down's syndrome, captioned, "See, the thing is, I have a really awesome life and there's no prenatal test for that." 

Then I saw a study that says that exposure changes attitudes.  The study showed that kids who spend time with kids who have disabilities are more empathetic towards kids with disabilities.  That's a mouthful of obvious.  Still it was what I needed to face my fear. 

"You are the light of the world. A city set on a mountain cannot be hidden.  Nor do they light a lamp and then put it under a bushel basket; it is set on a lampstand, where it gives light to all in the house.  Just so, your light must shine before others, that they may see your good deeds and glorify your heavenly Father."  Matthew 5:14-16

No more hiding the light.  My daughters are beautiful. 

I will share pictures.

Pride

Thoughts on 9-11

Today my oldest daughter went to school.  She was dressed in her red, white, and blue.  I wondered if they would talk about what happened twelve years ago.  They didn't, at least not in her kindergarten class.

I did not want to tell her.  It is too awful.  I do not want her to live in fear.  So I didn't.  I just told her that today we are celebrating many people who have made sacrifices so that we can live in our wonderful country.

I've been thinking about sacrifice.  And forgiveness.  And anger.

Twelve years ago, some evil men made it their business to attack our proud country.  They believed that by bringing down symbols of military power and economic prosperity, they could bring our country to its knees.  American heroes stood up and astounded the world.  When the towers were falling, our heroes ran toward the destruction to help.  When passengers realized they were on a weapon aimed at DC, they did not turn into helpless captives, they died protecting the target.  A lot of people died that day.  A lot of families will never be the same.

America did not fall even an inch.  We stood a little taller the next day, heartbroken but proud.  It turns out that money is not what makes America proud.  Nor is military prowess, though indeed we are proud of our military.  The pride of America is hard to pin down.

Our military fights to protect the right to speech, even when the speech in question is given by pacifists.  Like siblings, we fight and argue and call each other names, but don't you dare think that just because we are attacking each other you can.  In America, when see people who need help and we argue about how to help, not whether or not we should.  In America, we have a particularly arrogant group who call themselves a Church- and when the Westboro Baptists speak their hatred, we let them- but we are proud to report that in classic American style, a group of bikers ride around the funerals to protect the mourners from hearing the ugliness.

We are diverse.  We do not have diversity ironed out neatly- discrimination happens.  But we try.  We are not getting it right, but it is absolutely a priority.  We aim high.

The majority of us are Christian, a source of great pride to some.  Still greater pride though, is in our insistence that a majority cannot dominate.  Did you see the video about the soldier who stood up to vicious discrimination?  "That's the reason I wear the uniform- so anyone can live free in this country."

That is the America I am proud to claim.

It is terribly easy to hate in the abstract, but it is hard to hate people you know.

I will have to teach my daughters about what happened twelve years. They will see suffering.  They will see anger.  I will have to teach forgiveness.  Fr Barron says, "One way to practice forgiveness is to say, in regard to any hurt, insult, or injustice that has been done to you, “this is our problem,” that is to say, a problem that has to be solved both by you and by the person who has offended you.  This is not to indulge in “blaming the victim” politics or to be soft on evil, but it is a willingness to get down and do the hard work of drawing an offender back into the circle of the community.  It is a loving refusal to give up even on the wickedest of people."

We are not honoring victims of 9/11 or waving a proud patriotic banner when we spew hate toward Muslims.  In America you are free to speak.  You are free to think.  You are free to believe.  You are free to preach.

We have some big problems in this country.  We have millions of undocumented people, living in the shadows.  People go bankrupt paying for necessary medicine.  Important issues like abortion and homosexual marriage bring out the devil in all of us.  But every once in awhile, we get to stop and realize that we can have these fights because we are in a pretty awesome country.

We don't happily coexist, we disagree loudly.  That loud disagreement is at least part of the pride of America.

Open letter

Open letter to all parents:

Dear Moms and Dads,

I want to talk about something uncomfortable.  It has come to my attention that many of the best among you are making a big mistake.  I understand.  I was too, two years ago.

My daughter has a rare genetic syndrome, called Apert syndrome.  When she was a baby, the plates in her skull fused together.  That meant that there was no room for her brain to grow, and she needed surgery right away to relieve pressure.  Her head is larger than average.  When she was born, her fingers and toes were fused together.  She has had the first surgery to separate her fingers, so now her thumb and pinkie are released.  She has a tracheotomy, so she cannot talk yet.  Because of various complications, she has spent a significant portion of her young life in the hospital.  She is developing muscles that she needs to sit up on her own and to walk.  She will do these things, but for now she is in an adaptive chair.  My beautiful girl stands out.

 I already have to teach my girls that some people are just mean and you cannot let it bother you.  I already have to teach my girls that loving people who are mean is part of what it means to be Christian.  I am trying to teach them that most people are good, and that is where you come in.

When I take my little girl out, we see all kinds of reactions, but the most natural, the most genuine, the most common, is the reaction we see from most kids.  They look.  Some are puzzled.  Some worried.  The most adventurous of them ask questions.  Almost all are curious.

Staring is rude.  Pointing is rude.  You know this.  You are embarrassed by your child because they are pointing or staring.  You shush your child and pull them away quickly, and I know you are doing it to save my feelings, but my feelings are not so fragile and your action is doing real damage.  You are teaching your child to be afraid of what they do not understand.  I bet that most of you have a short conversation about diversity and not staring later; you are good parents after all.  I would like to challenge you to have the conversation right there.  Put a smile on.  Say hello.  Introduce yourself and your child.  I will introduce myself and my children.  Your child will ask questions.  Likely the same questions you would want to ask, but you feel rude highlighting the differences, even when they are obvious.

Here is the thing: kids categorize.  They need your help, and maybe mine, to make sure Sarah gets into the right category.  They ask questions to figure out how things fit in their world.  When you don't let them ask their "rude" questions, you confirm my daughter as "other."  Believe it or not, every kid I have met who was allowed to ask as many "rude" questions as they liked, learned in just minutes to see my daughter as I see her.  She is just a kid.

She loves lollipops.  She laughs at her granddad.  She has favorite music.  She is going to school this year.  Her favorite color changes all the time.  Today it was green.  She has a younger sister and an older sister.  Her favorite TV show is Veggie Tales.  She is Daddy's punkin and Mommy's sweet pea.  She will absolutely charm you with her wide, blue eyes.

Imagine what my daughter sees.  A sweet little face unable to look away from her.  Pointing.  Then an adult pulls the child away, consciously avoiding looking at her.  Now imagine that this happens over and over again.  She is a bright little girl, and this is very hurtful.

At the very least you can model the behavior you wish your child had shown.  Make eye contact with her and smile.  Anything less and it won't matter what you say about diversity later.  Your kid and my kid both got the same message from your embarrassment: She is "other."  She is something, not someone.  The initial fear was confirmed.  I will take rude questions over that hurt any day.

I am not accusing.  I know it is hard.

There are nasty bullies in the world.  We will get over that.  We will get over the stares and the pointing from people who should know better.  We will get over the nasty comments.  We will get over the name calling.  We will get over it all because, as I told my older daughter, no matter how many people cannot see past her differences Sarah is surrounded by people who love her.  People who see her.  And she is amazing.

Kids are not mini adults.  They are astounding little people.  They are curious and open and full of wonder.  You can teach them to see a child like them when the see my precious girl who looks different and rides in a wheelchair.  You can teach them to see her as a potential friend.  Or, you can teach them to be afraid.  It is your choice.  I won't judge.  Like I said, I was you and I did not know how to act either.  You don't have to be one of the people who love her- though honestly, you absolutely will if you give yourself half a chance- but please, be one of the people who see her.  Teach your kids to see her.  Please.

Rebecca is one month old.  It does not seem possible.

Rebecca is strong.  When people meet her they first coo over how sweet and tiny and delicate and feminine she is, and she is all those things.  Then she decides that she wants something and her expression of want inevitably produces surprise.  She is strong.  I was made uncomfortably aware of her strength starting about two months before she was born.  She reiterated for a larger audience immediately at birth.

"I just want to hear her cry,"  Dad said.  (After Sarah, that does not sound crazy.)  Obliging her father's only request, she introduced herself to the world loudly.  For about an hour.

My extended family keeps in touch via an email listserve, where we can argue and discuss and post baby pictures or amusing anecdotes. In a recent (relatively, it has been a few months) family discussion someone asked about a book about Mary.  I cannot remember the title and had not read the book, but it yielded and interesting discussion.  The book was an attempt to tell the narrative of the gospels from Mary's perspective.  Apparently the author thought that traditional depictions of Our Lady are weak and watery and wrote a character that few would recognize.  So there was a discussion of Mary's humanity and various perceptions.

Prior to that conversation, it had never occurred to me to wonder whether Mary was a ninny.  I was a little surprised to learn that it is not an uncommon view, at least in art if not in reality.  Perhaps she is
mistreated by art and history.

I began to wonder what shaped my own ideas about Mary.  I use the same words.  Mild.  Gentle.  Sweet.  Beautiful.  Obedient.  Loving.  Feminine.

Mary is a mother.  She is not just any mother, of course.  She is the mother of God.  Theotokos.  And He gave His mother to us.  She is my mother.  That is a role I could begin wrap my mind around as a child when my perceptions were forming.  I have a mother; I know what that role looks like.

Mother is someone who gives everything all day and all night if I need her.  Mother is someone who listens carefully and patiently.  Mother is someone who says that she cannot fix every problem, but somehow manages to fix most of them.  She teaches courage and love by example.  She is soft and gentle and impossibly strong.  She is quietly protective.  In any event, that is what I saw.

Mary is feminine.  She is not just a woman, but the woman chosen above the rest.  "Blessed are you among women."  A feminine ideal.

The women I knew were diverse.

From my mother and my aunts I learned about generosity.  You give because there is a need, no because you want to or because you have extra.  Generosity does not have to be difficult, but it is sometimes.  It is not generosity if the recipient feels guilty for taking the gift.  Give freely.

From my grandmother I learned that everything has a time and place.  You may not have time to read and live what the Church fathers had to say about contemplative prayer when you are a half dozen kids.  That is OK.  Learn what God wants from you today, and trust that He will make you able.

I learned that it is possible, preferable even, to do difficult things cheerfully.

I learned that love is difficult.  I learned that love is a decision, not a feeling.

They were feminists and anti-feminism traditionalists, which to my young eyes, looked very similar since both were insisting that women be allowed to be feminine and that femininity is not a weakness but a strength.

Some of the women who inspired me stayed home with their children, some were career women.  Most, but not all, shared my faith.  They had different priorities, sensibilities and personalities.  Some of the women who inspired me followed their beliefs right to jail.

They were women who loved, and because they loved, they challenged and supported those they loved.

The women I watched were advocates.  They were activists.  They seemed fearless, though in fact they were not.  They faced their fears.  They were tough, seemingly unbreakable.

They were fun.  To a kid, that is everything.  Humor.  Joy.  Life.

It never occurred to me that a woman being womanly could be a mere supporting character.  I am not suggesting that the women were better than the men.  But if I am going to imagine not just a woman, but a woman who is the ideal of femininity, I cannot imagine her passive or feeble. I can give her all the adjectives Mary usually gets.  That does not confuse my idea of woman.  Mild.  Gentle.  Sweet.  Beautiful.  Obedient.  Loving.  Feminine.  These adjectives are not easy to accomplish unless they are passive.  If you do not have opinions, emotions, or a temper you may look mild, temperate or gentle.  But it isn't real, is it?  It takes real strength to display these qualities when they are tested, doesn't it?  When a child is disobedient, it may be easy to ignore it- but it is wrong!  It may be easy to lose your temper- but it is wrong!  Can you correct firmly, lovingly, effectively, repeatedly and gently?

I guess I don't know how I would define feminine.  But in my mind, in my experience, it has a lot to do with strength.  I hope I can surround my daughters with the kind of women I grew up with.  I am proud of my beautiful, strong, tough, resilient, feminine daughters.

Friday is the big day!

This Friday we will finally meet the newest member of our family.  She has made her presence known more and more dramatically in recent weeks.  She seems determined that we not forget she is with us.  Whenever Lily or Sarah is in my lap, she kicks.  When Daddy comes home, she kicks.  When I am hungry, she kicks.  I am excited to meet this little one.

She is still breech.  Naughty child.  The plan is to flip her over and induce right away.  That way we hope to avoid a cesarean and the surgery recovery time.

Lily understands, but is understandably a little worried.

Sarah is doing well.  She is still pretty sure she is the new baby everyone talks about.  I do not know how much she understands.  We have been telling her that she is going to be a big sister.  She will get it when the baby comes.

Both girls are more clingy than they were prior to our most recent hospitalization.  The longer we are home, the better it gets.  I can walk out of the room with Sarah watching me now, as I could not before.  But if there is another adult in the room and I leave, she cries.  I guess she knows I won't leave her alone, which is good.  Lily does pretty well during the day most days, but she wants to sleep in our room.  She says she is scared in her room.  She complains about nightmares.

She asks amazingly difficult questions, especially at night.  Last night she wanted to know how if Jesus was God, God could die on the cross.  She was confused, "because He is in Heaven.  He is everywhere."  The night before she asked me how God could make people well and how come some people get sick.  Earlier today she was asking why God made bad guys.  So in the past two days, I have fielded questions on the nature of the Trinity, miracles and evil from my four year old.  It wouldn't be so bad if she would a accept a short answer, but she keeps asking questions.  I should probably record some of these conversations because her questions are fantastic but challenging.  My answers..?

Lily takes care of Sarah.  She gives her her medicine and drives her around in the kidkart.  She makes sure Sarah is at the dinner table at dinner time, and she makes sure I can see Sarah's pulse ox.  She makes sure Sarah has toys.  And of course, Sarah loves her big sister.  They both get upset with me when I will not let Lily do everything for Sarah.  Sarah has to learn to ask for things.  Sarah has to learn to reach and play.  Lily does not think that Sarah should want for anything, and Sarah agrees.

Sarah has an evaluation this Thursday with the Infants and Toddlers program- which is the county program currently providing therapy.  We are going to reassess her needs.  We are also going to talk about school!  Apparently, Sarah is eligible for school.  We have to learn a little more about the classroom before getting too excited.  I think it could be really good, or maybe really not, depending on everything from the teacher to how it is decided to group children.  I have questions- a lot of questions.  In the best possible scenario, though, Sarah would be in a social atmosphere getting much needed therapy for a few hours every day.  She could thrive.  She is very smart, and was making daily progress when she had daily therapy.  She loves being around people.  But, she is young.  She will only have just turned two when she begins, if we go that route.  The alternative is to keep her home for another year, and make the best use we can of the infants and toddlers program.

Questions of nursing coverage and insurance remain unsolved.

Today a beautiful couple got married.  I recently realized that I have gotten really grumpy about weddings.  Well, not the weddings themselves, which I love, but the months, weeks, then finally days leading up to the weddings.  It drives me crazy.  I remember it- it was not that long ago when I married my beloved.  There is all this pressure on the bride to focus on herself and all this pressure on the groom to get out of the way.  The details easily overshadow marriage prep.  In fact, sometimes the marriage prep is one of the trivial details, just another thing to check off on the long list of chores.  Not even dear hubby ranks as more than a particularly important detail on My Day.

This couple, whatever else they did, seemed to stay focused on each other and on God.  It has been fun, in recent months, reading their updates on preparations and growing excitement.  They talked about their upcoming wedding  as "the best day yet."  I like that.  Though not an end itself, it was exciting and wonderful.  It was important and life changing.  It was a new beginning.   I am excited for them.  I wanted to celebrate this wedding with them.  

The Gospel reading today (Sunday's reading, we went to the vigil Mass) was one of the familiar scriptures that might easily slip through without impact.

"My children, I will be with you only a little while longer.
I give you a new commandment: love one another.
As I have loved you, so you also should love one another."

The command is to love.  

The priest told us we are not called to like each other.  That sort of struck me.  We have to love but we do not have to like.  When we are young, we get the idea that love and like are similar, maybe different only in degree.  (I like chocolate.  I love dark chocolate.)  He differentiated.  Like is not something you can control.  It is an emotion.  Love is a decision.  That is why Jesus can command it.  Love, at least the love that He commands is a decision; it is not an emotion.  

The priest went on, how are we to love?  In the way that our Lord loves us.  His love is sacrificial.  He gave Himself wholly to us.  He died for us.  That is how He loved us.  He did not tell us to face our sin and death.  He broke their power by offering Himself, the Lamb, as an innocent sacrifice.  When He tells us to love one another as He loved us, it is not a flaky, cuddly, sentimentalism.  He is telling us to offer ourselves fully.  Love sacrificially.  Offer a love that is completely entrenched in the good of the beloved.  

There is always some tension over the scriptural call that wives be subordinate.  It is tempting to ignore it as an anachronistic command rooted in a sexist society, which we have long since left behind.  Tempting, but that is an uncomfortable precedent for scripture interpretation.  Also, it glosses over the complementary nature of the command.  

"Be subordinate to one another out of reverence for Christ.
Wives should be subordinate to their husbands as to the Lord.
For the husband is head of his wife just as Christ is head of the church, he himself the savior of the body.
As the church is subordinate to Christ, so wives should be subordinate to their husbands in everything.
Husbands, love your wives, even as Christ loved the church and handed himself over for her."

In the objection, we forget what love is.  Love is not about self.  Love doesn't always feel good.  Love is not a comfortable captivation.  Love is a decision to put someone else above yourself.  It is a decision to sacrifice.  It is the opposite of the reinforced selfishness of our culture's wedding infatuation.  

When Josh and I were married, the priest startled our collected family and friends.  In the middle of his homily, he pointed to the crucifix and told us that that was the call.  That is what love looks like.  Christ crucified.  

I went to an Orthodox Church for their celebration of Easter one year.  It was stunning, both in familiarity and in difference.  They sang, again and again, "Christ is risen from the grave!  Trampling down death by death!  And upon those in the tomb, bestowing life!"  His death was our sacrifice, and our example of what it means to love.  It is not easy, but it is joyful!  It is beautiful!  It is powerful!  

Love is not always hard.  No doubt, Christ laughed and had wonderful times with his friends.  We know he celebrated with at least one couple at their wedding.  He provided the wine when there was not enough.  We should celebrate weddings!  It is a joyful beginning, a union formed in love.  And besides, celebrations are fun!

I was sorry to miss the wedding today.  

I hope that the joy they have exhibited in the preparatory months leading up translates into a deeper joy in marital love.  I pray that their faith grows.  I expect that their unique challenges will be met with both love and faith.  I hope this was their best day yet, and that their mutual love brings joyfully met better days and I pray that they meet their bad days with the same exuberant faith and love.  

The good news is that after a few bumpy days, Sarah is doing very well.  She is settling into a routine.  Now, all I have to do is start adding things like daily therapy into that routine so we can continue to make progress with her development.  

The bad news is that there is a chance that there will be a gap in coverage between our primary and out secondary insurance.  That is frustrating, because I asked many times and was reassured many times.  It is also a little scary.  A gap in coverage does not mean that she cannot go to the hospital or the doctor or anything like that- primary insurance still covers all of that.  It means that we will lose our nursing coverage.  I have been telling myself for about a week that life gets easier on the sixth, when because we lose our primary nursing coverage, we get our secondary nursing coverage- and that means we go from eight hours to sixteen hours.  If the secondary insurance does not kick in, it means we simply lose nursing altogether.  

I learned more about medicine than I ever wanted to know in the first few weeks of Sarah's life.  Since then, we have become comfortable with all kinds of things.  The truth is, there is a good chance that Lily knows more about trachs than most grown-ups.  Until this point, the most difficult things have been medical.  We have not had to battle (much) with insurance.  The coverage we have, through Josh's job, has been excellent.  And actually, that is the problem now.  Apparently if they had just denied our claim for nursing, instead of covering a few weeks, we would not be having these problems.  It turns out, if you have good insurance and make a salary, it is very difficult to get help even if there is clear need.  We are now learning how to navigate a system which is very complicated by design.  

I am following up with half a dozen people about half a dozen programs and waivers.  I am talking to three case managers, none of which are technically the right person to ask my questions, but all of whom know the system reasonably well.  It is all very confusing, but I am learning.  I am pretty sure we have nailed down the right waiver to get the right coverage in the long term.  

One of the people I spoke with today told me to, "call her and sound really desperate."  I have heard people getting all kinds of crazy advice to get coverage they need.  "Get a divorce.  You will qualify as a single parent."  "Only report your income."  Lie.  Just lie.  At least they didn't tell me to lie.  In fact, I am going to be desperate if coverage does not come through.  

Sarah's has a trach and is on a vent at night.  She has a little machine, called a pulse oximeter (pulse ox) which monitors her pulse and her o2 level.  The vent itself has a number of alarms for various problems.  There are a lot of alarms to let us know when things are going wrong.  But, because of the type of trach she has, we are told that it is possible that the trach could come out and no alarms would go off at all.  That is not a huge deal during the day.  She is always close to someone.  But at night, we need to sleep.  Without a night nurse, how will we sleep?  

Focus on the good.  Face the trouble, but focus on the good.  God will work this out in His own time.  I trust that He knows what he is doing.  I have placed her in his hands before.  He loves her.  He is in charge.  

So... the good.  Lily is very excited about Kindergarten this fall!  She hopes the that her teacher will teach about volcanoes and wells and dinosaurs and the planets.  I hope that her teacher has a good sense of humor.  

Sarah did have some drama the day after we got home.  Her O2 saturation was low and she had a slight fever.  Her primary care doctor sent us to to the emergency room.  We are still not sure what happened, but it resulted in a full day in the ER waiting for various specialists to discuss with each other whether or not Sarah could go home again.  She did.  She has been fine ever since.  

At home, I am primarily responsible for her therapy.  I am again grateful that I can be a stay-at-home mom. The county program is a "teaching" program.  They will come out once a week to show me what I should be doing with her every day.  They will reevaluate soon.  In the meantime, I am doing the best I can.  We are signing with her, and she has picked up a few signs- though at the moment I cannot tell the difference between Sarah calling me and Sarah blowing kisses.  She does both.  Lily is in on the fun of signing, so long as the fun includes "Baby Signing Time" movies.  It does.  Josh is very pleased because Sarah signs " Hi Daddy" and smiles at him, all the time.  She is also pretty consistent signing "more" and "all done."    

The new baby is healthy.  She is currently breech, but measurements today show that she still has room to flip.  We are hoping!  It is fun to watch her move.  And yes, we can watch not just feel it when she is moving.  Blessedly, she usually lets me alone at night.  Lily refuses to call her "new baby" anymore.  She is calling her Rebecca Grace, and corrects me if I call her anything else. We are reasonably confident that we have the best OB in the world.  He and his nurse are awesome.  I have said it before: if you have to pick between a good doctor and a good person for medical care, you know what you will pick- but it sure is nice to not have to pick!  

Elizabeth Cecilia, Sarah Katherine and Rebecca Grace.  I reserve the right to change my mind right up until the day she is baptized.  Especially if when I meet her she looks like a Julia. 

The world is full of wonderful people who have been offering help of all kinds.  I am beginning to meet more and more people in the community, which has been a great pleasure.  We expect to bring the whole family to Church together, in our parish, for the first time since January this weekend! 

An uncomfortable post

We are home!  Home is wonderful!  The girls are happy to be with each other and I hope I never again take for granted the pleasure of sleeping in the same house with my husband and children.

Home has its own new set of challenges.  We are beginning to work out both the ups and the downs of having nurses in our home.  An extra set of hands is absolutely necessary sometimes, but when I don't need help, they are still there.  Some are warm and friendly and lovely, and their presence is comforting even when not necessary.  Some are focused on the job.  That sounds good, and it probably is, but it means that when nothing is going on they are looking for problems.  That is a very stressful energy, even when they bite back their criticisms of my care.  Some are just there.  They will do exactly what I tell them, and nothing more or less.  I hope they warm up as time goes on.  One has simply not done the job and she is not welcome back.

Then there is coverage.  Apparently, if our insurance had simply denied us, we would have 24 hour nursing for a few weeks and then 16 hours.  As is, we had a complicated calendar.  First, 16 hours for three days, then 12 hours for three days, then eight hours for a a few weeks.  Then our primary insurance runs out and secondary insurance picks up- with sixteen hours.

So, on May sixth we might have a nursing schedule in place, but not before.  On May eighth, baby #3 is due.  Baby #3 might be named.  I am still teetering.

A few weeks ago, I saw a note in a prayer group.  A mother I did not know was having a very difficult time.  She was very ill and needed help doing daily chores and caring for her kids.  I was sympathetic, of course, hers was a very sympathetic story.  But there was another emotion, and when I identified it, I was startled.  I was jealous!  I was not jealous of her plight.  I am not quite that crazy.  I was jealous of her ability to identify her needs, figure out what she could do, and ask for help with the rest.  She asked for specific things.

People are always asking me what I need.  To be perfectly honest, that is a very stressful question for me.  I know I need help, but what do I ask for and who do I ask?  I have promised at least a dozen people that if I need help, I will ask.  So, I am going to ask.

The problem keeping me awake at night is what will happen when I go into labor.  Who will I call?  Will I have to bring my kids with me to the hospital because no one is comfortable with Sarah's needs?  What if I go into labor when I am alone?  Josh only works three days a week, but on those days, he is gone from 8 a.m. until 11 p.m..

My hope is that I can line up a few people that can come and be with my girls if I go into labor.  It would not be for hours and hours, it would be until my parents could get here.  The difficulty is that they would have to be comfortable with Sarah's needs.  I can train anyone who is willing to learn- it is not hard, but I understand that it is intimidating.  The idea is not that it will take a lot of people, but that most people are busy and so I want half a dozen people I can call, because at any given time almost everyone will be busy.

Otherwise, needs are clear.

I cannot go very far, which means Lily is cooped up in the house more than she should be on these beautiful days when Josh is working.  A few play dates or babysitting hours, even just an hour at the park, could make pretty dramatic progress toward sanity in this house.

I am in the process of re-organizing my whole house.  Fortunately, my Aunts and mother cleaned my house while I was in the hospital.  Unfortunately, living out of suitcases and bags in four different places for almost three months and then coming home with tons of new and big equipment means that the house feels turned upside-down.  Since the mess was brought into a clean house, I think I can get to the bottom of it.  But I could definitely use help, especially if you should happen to be one of those mysterious organizing types who would enjoy the task.  Organization matters for more than the sanity of the residents.  Since we have multiple nurses coming in and out, I have to make sure that everyone can find what they need.

And we are (or should be and will once we get the most immediate task of childcare under control) looking for a bigger car.  I am still not sure what to do about this.  If you or someone you know has a reliable vehicle that is biggish (thinking minivan size?) and are looking to sell, please get in touch.  Sarah has a lot of equipment, and we will have three car seats.

Food is currently under control, thanks to the blessing of a good Church community.  We moved to the area a few years ago, and were still new to the area when we found out that I was pregnant with Sarah.  It has been a whirlwind, and between getting to doctor's appointments and hospital stays and making sure Lily was in good and consistent hands, we simply have not been home very much.  We have spent more time in DC (hospital) and MD (parents) than at home in VA.  So, the truth is, we do not know our Church community at all.  Nonetheless, when they became aware of our need, they filled it.  I am not sure how to feel.  Grateful, of course.  These are near strangers filling a need, but I don't want them to be strangers.  Asked three months ago what our biggest  physical need was I would have answered without hesitation: a local faith community.  When things settle a little bit, we are looking forward to going to some of the social events hosted by the Church and getting involved in the various ministries.  In the meantime, we are encouraged and delighted to note that the community is here.  And we are eating well, which is I can absolutely say would not be happening without help.

A number of you have expressed regret that all you can offer is prayer.  Please, please do not apologize for the single most valuable gift we have received.  Wherever my faith does fall short, I do not have even a smidgen of doubt that God has sustained us through prayer.  God has protected Sarah and Lily.  God has shown Josh and me a path forward, even if it is only one day at a time.  God has given us inexplicable peace through objectively difficult times.  He is listening to your prayers.

"The fervent prayer of a righteous person is very powerful." James 5:16

Do you accept Jesus as your Lord?

When I was in high school I was in an interdenominational Christian youth group.  I learned some, but mostly it was just a weekly reminder to keep praying.  It was lead by a great leader who was open, honest, and a great listener.  He was just what teens need in a youth minister.  He knew what he was talking about, he was aware and honest about imperfection, and he was on a journey of faith which was dynamic.  He made you want to get on the path, and made it seem doable.

One year they went on a retreat.  Honestly, I cannot remember a lot about the retreat except that toward the end of the weekend there was an altar call.  I am a Catholic.  It was not familiar.

"If you feel God calling you, if you truly believe that Jesus is your Lord and Savior, if you want to spend the rest of your life following Christ, come on up now.  Dedicate your life to Christ.  Accept Him who is calling you and be His.  Invite Him to save you."

So up I went.  There were a lot of people who came to the altar that night.  But honestly, I was surprised to see that not everyone went.

A few months later, I had a similar experience while visiting a church with a friend.  It was not until I was in conversation with one of the adult leaders that it began to dawn on me that I was doing something different.

"I remember when you were saved."

While I was trying to recall what she could be referring to, she went on about how special it was to her to have shared the experience.

I am not sure how many times I was "saved" before I figured it out.  I did not know that this was a unique experience.  It was life changing, but this sinner needs her life changed pretty often.  Invite Him in.  Accept Him.  Decide to follow.  I thought the altar call thing, was pretty cool.  A little slow on the uptake, I could not figure out why everyone did not go up every time.  Why are we gathered in church if not to accept Him and commit to change?

Pressed, I can usually find words to talk about my faith.  Not always, but often.  But am I living my faith or just talking about it?

We spent all of Lent, and a few extra weeks on either end for good measure, in the hospital.  Briefly, for those not following, we came in for three surgeries which we expected to take six to seven hours total, including sedation time.  We expected to stay in the hospital recuperating for about a week.  Our expectations were dashed when they were unable to pull Sarah's breathing tube after surgery.  A few stressful weeks followed, with two failed extubation attempts and a code event resulting in twelve minutes of CPR, but no lasting brain injury.  Sarah self-extubated successfully.  (Yes.  That means what you think it means.  Two days after the failed attempt that resulted in a code, Sarah pulled the tube out herself, and breathed.)  But we were unable to wean her oxygen support, then being alternately given through a nasal cannula and a mask.  Her lung collapsed.  So, we got her on the surgery schedule for a tracheostomy.  Post surgery, we (again) thought it would be a week or two of healing, then home.  After a couple weeks, we transferred to a sub-acute hospital to recover slowly in her own time.

Meanwhile, we are supposed to be getting ready for baby number three.  So far, we have not even picked out a name.  Well, maybe we have.  I am not committed to the name yet, but Josh and Lily agree.

I have been thinking about how often I fall off the path and how long it takes me to notice.  Then, having noticed, how long it takes me to recommit and to invite God to be in charge again.  There are always reasons.  There are always stumbling blocks.  There is always an excuse.  I was in an argument recently about the nature of culpability.  But right from the beginning, we have our example.  Is it so hard to put yourself in Eve's shoes?  Who wouldn't want to eat that apple?  There was the snake lying to her.  But she was certainly culpable.  She ignored God.  It was easy.  It was understandable.  It was wrong.

I need another altar call.  This time around it was harder for all kinds of reasons, but the biggest difference between this hospitalization and every other hospitalization was that this time around I was battling for control.  Not just over medical decisions, but over the whole situation.  I did not want to be here.  It was easy to focus on all the things going badly, and to complain.  It was easy to feel sorry for myself.  It was easy to lose perspective.  It was easy because bad habits always are easy.

The same story, told another way, could have gone like this:

We came to the hospital with a child who had had pneumonia at least once a month since the fall.  She never quite had time to recuperate before she got sick again and needed to go back to the hospital for a few days. We knew she needed to see a Pulmonologist, but we decided it could wait until after the surgery which had already been delayed three times due to illness.

The surgery was successful!  It went well, except that she had a pneumonia which declared itself when they tried to extubate.  She was going to need more support.  So, we spent a few weeks in the hospital, followed closely by plastics, ENT, pulmonology, and even neurosurgery checked in on her.  Plastics were able to see her every day until she was well healed from the surgery- and the casts came off a little early because of that.   They were seeing her every day, so healing was on her schedule.  ENT and Pulmonology were specialists we needed on board, but did not have yet.  With those relationships in place, we got a lot of imaging and a lot of new information about Sarah's anatomy and needs.

When it became clear that Sarah needed a trach, it was a matter of days to get her on the surgery schedule.  it could not have happened that fast outpatient, unless it was an emergency.  So that need was also met.

Ever since recovering from that surgery, Sarah has been a stronger, happier child.  My Aunt Lucy was holding Sarah a few months ago, and she said that Sarah struck her as a happy little girl dreaming about pink ribbons.  The biggest change since the surgery is that what Aunt Lucy felt is not a secret anymore.  She lights up and smiles and communicates and plays.  Apparently, not working hard to breathe leaves you with more energy to do the things you want to do.

Since she was on a vent with a new trach, we had to figure out what her "new normal" breathing would look like.  How much support does she need?  Getting that answer matters, and it takes time.  So, we left our dear friends in the PICU at Children's and went to a hospital that does long term care in a sub-acute facility.  The new hospital specialized in therapy!  So, although we were there for the vent, we were able to begin to meet Sarah's therapy needs.  She got speech, physical, recreational, and occupational therapy each three times a week.  She tried out all kinds of cool equipment.  Under the care of some fantastic therapists, she has blossomed.  She is making daily progress on all fronts.  It is very exciting!  And, though it will take quite awhile to get Sarah's own equipment, we are going to borrow theirs until hers comes in.  Inpatient care meant that we could try these things out over weeks, not hours, and get the right one for her.  Inpatient care meant that we would not have to wait for months to begin to fill her needs.  Inpatient care meant much more intensive therapy than we will be able to do at home.

It is not terribly hard to find the silver linings here.

Pessimism clings.

What does it mean to call Jesus Lord?  The word lord implies power and authority.  When I again claim Jesus as my Lord, I am giving him the authority which he already has.  I am submitting.

Father, I ask once again that you direct my heart.  Take control, and show me your way.  Help me to hear the whispers of truth, truth which will not abide with pessimism and doubt.  Let your Spirit be my guide and my strength.  Show me how to be the parent you have asked me to be.  Occupy the space in my heart prone to selfishness, so that I can be the mother my children need.  

Jesus, I am asking you to be my Lord and Savior.  Amen.  

Ever since we came to the hospital for surgery in mid January, we have had a difficult timeline.   It has seemed like about every two weeks, usually just as we thought we were getting close, someone would tell us that it would be another two weeks.  Our most recent timeline was more carefully deliberate.  I had insisted on a family meeting to make achievable goals, if not a timeline, for discharge.  Being in the hospital is hard.  Being in the hospital pregnant is hard.  Being in the hospital, pregnant and with no end in sight was getting to be more than I could do.  So about a week ago (don't press me for a real date, I have been losing weeks- I only know how far along I am when I go to my OB and he reminds me.) a meeting took place.

The lead up is important.  The night before the meeting, Lily left the hospital with Josh.  She went up to the doctor on her way out.  "Sarah needs to go home."  

Waffling a little, "Well, she needs to get better and..."

"No.  Now."

She was not angry.  But she was forceful.  My goal for the meeting was roughly the same.  I wanted to demand that she send us home.  I wanted to be clear and forceful, but not disrespectful.  She is a good doctor, just moving more conservatively than I felt was medically necessary.  I also wanted it to be 100% clear that if my choice was to stay in the hospital for three more weeks or go home and make the same progress in six months, I wanted six months.  I am OK with going home on a vent.  Emotional needs are not less important than medical ones, and we need to be together as a family.  

At the meeting, everyone put all their cards on the table and the social worker played the role of counselor.  She made sure everyone was being heard.  The doctor basically said that we had too many balls in the air to go home.  The vent settings and wean were the biggest, but not the only.  We are still weaning sedation.  She is willing to send Sarah home weaning one sedation medication slowly, but not two and to send her home on a sedation wean, she wanted to have started the wean in the hospital and seen no signs of withdrawal.  Withdrawal is awful.  (I have a new found respect for any addicts dropping their habits, having watched the pain and frustration of withdrawal- and this in a very controlled way where we could give an extra dose when needed.)  

The doctor also really wanted to meet her respiratory goal for Sarah in the hospital, which is no ventilator support.  She said, "I went home and thought very seriously about this. "  (Good job Lily!!)  "I think that the second week of April is a good estimate."

She did not say two weeks!  It was over three.  

We did go back and forth a bit.  Is there wiggle room?  (No.)  Can we wean at home?  (No.)  

I told her that I could not disassociate Sarah's medical wellbeing from my family's.  I told her that if she did not get us home in a hurry I was going to deliver a baby in her (children's rehab) hospital.  I told her that I thought we could wean more aggressively- and it was not just my opinion, but the opinion of most of the respiratory therapists that had worked with Sarah.  I did not cry.  

Josh has been working twelve hour days, and due to a scheduling nightmare, he had seven shifts in a row.  Palm Sunday fell in the middle of a particularly rough week for us.  On Monday, Lily had not been sleeping because she missed me.  I had not been sleeping because Sarah's monitors were going off all night- although she was fine.  I found out that what I thought was going to be six days, was going to be seven.  The difference between six and seven may not sound like much, but it is.  

So, I decided to leave Sarah alone in the hospital for a night. I knew it would be hard, but I did not know what else to do.  

A friend had sent a gift: a relic of the true cross.  

I found some string and I tied the relic and the medals to Sarah's bed, along with a cross made from Sunday's palm leaf. I said a prayer and I left.  Lily and I slept well.  

The next day, I found out that Sarah had had a terrible night, as I had expected. She had been inconsolable until she fell asleep from exhaustion, at which point she had some apnic events, presumably because she was so tired. It might have been discouraging, but for the good news: the good news was that in spite of it, the doctor moved up her discharge date. We went from a vague hope of the second week in April, assuming no events or setbacks, to April fifth.  The events are unrelated as far as I can tell.  The doctor decided she could speed up the sedation wean, slightly, and the respiratory therapists had been advocating for a more aggressive respiratory wean.  Sarah will be "medically ready" on April fifth.

We need prayers.  Sarah has all kinds of new home care needs.  We will have home nursing and a whole bunch of new equipment.  We are taking home a ventilator and everything that comes with that.  (A lot!!)  Trache supplies.  A new chair.  A stander.  A bath chair.  A suit which is made to help support her core.  Braces for her legs and feet to support her in the stander.  We need more insurance.  So, we have been applying for the various programs.  I will not get into the nitty gritty, in part because I cannot understand it all, but it has been a confusing and frustrating battle getting the coverage she needs.  We were denied for the program we expected to get into, and approved for a program which we thought would automatically deny us- but the approval is temporary.  If we are still here after the fifth, it is far more likely to be paperwork than medical needs holding us up.  The case manager is good, and she is working hard.  We are very hopeful.  

We will not be home on Easter Sunday.  But we should be home for Divine Mercy Sunday!


Sarah is flourishing.  Despite my frantic worries, Sarah is doing really, really well.  Under the care of some amazing therapists, she is learning more and more every day, and it delights her.  She has been a wonderfully happy kid, working ever so hard.  She amazes me.  She has charmed the people who worked with her here.

The paperwork terrifies me.  The newest (still not born- due early May) baby is growing so fast .  We still don't know what we are going to do about a car for three children plus equipment for Sarah.  These are the worries that keep me up.  But to keep it in perspective: All three of my girls are remarkably healthy.  We will be home soon.

Thank you for praying with and for us.

It has been a very difficult few weeks.  There is just no way around it.  I actually did write a post last week, but it was so angry that I decided it would not be appropriate to post it publicly, at least not without first taking my complaints to the hospital administration.  Suffice it to say that I felt that Sarah was not getting what she needed and no one was listening to me.

I having been having a hard time.  As our new baby's due date fast approaches, it is getting hard to sleep.  The chairs are not comfortable, no matter how many pillows I get.  I am worrying.  The alarms and the people and the noise and the light- it is really hard to sleep here.  It has been hard for Josh, who wants to make sure all his girls are OK, but he still has to go to work.  It has been hard for Lily, who cannot understand why it is taking so long to go home this time.  And since we are all struggling, it is hard to stay cheerful.

Yesterday was Palm Sunday.  We went to Mass at the Shrine of the Immaculate Conception.  We went to the Mass with a full choir.  I love the music at that Mass.  They always do some hymns, with choir and organ.  They usually do some enchanting polyphony.  Yesterday, as we raised our palm branches high, they sang a very forceful Hallelujah, which I had never heard before, but loved.  During the presentation of the gifts we sang "Oh Sacred Head surrounded."  It is so familiar, it is easy to breeze through the words and forget to pray, but I was awakened by the second verse we sang.

"In this your bitter passion, Good Shepherd, think of me.  With your most sweet compassion, unworthy, though I be: Beneath your cross abiding forever I would rest.  In your dear love confiding, and with your presence blessed."

I just do not associate the image of the Good Shepherd with the cross.  It is an easy association, and one that our new pope makes easier.  The people who need the mercy of the cross are the ones who are lost and broken.

"If a man has a hundred sheep and one of them goes astray, will he not leave the ninety-nine in the hills and go in search of the stray?"  Matthew 18:12

Our Lord does not leave us to wander in vain hope that we will find our way back.

Cheer is not the most important thing.  It is helpful in healing, but the reason this all felt so discouraging was that Sarah does not seem to need healing.  She is well.  Well is relative.  She is rebuilding strength which she lost during an extended hospitalization.  We, all of us, thought that she could do this better at home.  We were not cheerful.

Cheer is not the most important, but hope is.  We were not losing hope, when we thought about it, we were just thinking about it less.  When things were particularly bad, we would pray.  But the hour to hour involved, at least on my part, more complaining than prayer, and thus more frustration than hope.

Can I find rest in the cross?  Can Holy Week be a pilgrimage of faith?  Will I be ready for Easter, or will I still be feeling sorry for myself and broken?

"Like a shepherd he feeds his flock;
in his arms he gathers the lambs,
Carrying them in his bosom,
leading the ewes with care."  Isaiah 40:11

I will be ready if I let Him make me ready.