Little Kunoichi: The Ninja Girl

It is looking more and more like we are in a full blown flare.  Whether or not it started with the stomach that is going around does not really matter at this point.  She is having all of her traditional symptoms.  My poor baby is vomiting every night, only at night.  She feels just awful in the morning.  Her fingers are swollen but she is complaining that all of her joints hurt.  Some of the newer things she talks about are being itchy all over.  We know from the Facebook group (thank you all so much) that this is a common complaint. 

She is eating in small spurts but there are sores on the inside of her mouth.  In these pictures you can see very small lesions in the top corners of her mouth.  PG in the mouth has only been reported in 11 patients (that is adults, never in children that we could find).  She is saying her mouth hurts a lot.  The good thing is that right now she is drinking.  Mommom Sherry just bought her a fun cup from the Disney store and she has wonderful people taking care of her everyday.  We just could not do this without our 'village'.  Having fun cups is an incentive for her to keep drinking. It is really hard to see them in these pictures.  They are right below her teeth. 

My goal right now is to not get into the place we were in January.  Aunt Tina reported that she was good during the day yesterday.  It was the beginning and the end of the day that the pain really got to her.  I ended up having to give her 'the good stuff' last night.  She took it without a fight.  That tells me everything.  You all know how she feels about medicine.  If she takes medicine, you know it is bad.  Then she told me about 20 minutes later that the red medicine made her feel better. 

My other bug concern is watching pustules pop up quickly.  Lil got a small scratch on her face the other day.  It quickly turned into a pustule and now is surrounded by three pustules.  We are used to seeing pustules in old wounds but to see them come up in new spots is unusual. 

 

I am keeping the esteemed Dr. R in the loop but there is just not much we can do.  If it gets bad enough we will give her some steroids but that is a last resort.  This is our life, watching and waiting.  My hurt right now is that I have worked in a classroom and I am terrified that I brought home too many germs for her to handle.  My rational side says that is ridiculous because the twins do the same every day.  The irrational side sees my baby girl in pain. 

Our Taylor Swift push is still on.  We did our pre-recorded interview the other day.  The interviewer was someone who had never heard our story.  His reaction was so powerful.  He hears so many stories yet ours stood out to him.  Our touched his heart.  Ours made him sit back and scratch his head and breath deep.  Ours made the other interviewer cry (and she has heard our story numerous times).  My girl is special.  She is so strong.  We have chosen a couple of Taylor Swift songs to get her to sing, I will video it and get it on Facebook.  I do not have twitter but I might have to get it to get this going.  Gear up people;)  We are getting Taylor Swift to AI!  (Or at least her voice! LOL)
 * I have not proofread this post. 

 

 

The Hundred Dresses

 

Lil is not having a good night and it started with a very bad day. It all began with her sleeping in this morning until about ten.  For some kids that is completely normal but for our little bug that is pretty late.  Then the whining and crying set in.  It is just not Lil.  She is such a happy little girl; for all of her pains and all of her aches Lilly is just plain happy.  She sees sunshine on the cloudiest of days and in fact has a song she sings whenever it rains.  If something does not go her way she says, "That's ok Mommy." in the cutest little singsong voice.  When she does not feel good, you know it.  Today was one of those days. 

As you all know, she refuses to take medication.  Yes, I could hold her down and force it down her throat by squeezing her cheeks but I only do that in extreme circumstances.  My gut told me that her mouth was probably hurting today and my instinct was confirmed when I used my rudimentary doctor's tools (flashlight) and looked into her mouth tonight only to find about 4 mouth sores.  There is a huge pustule on her thigh, it is large and in charge. 

And then the vomiting started.  Once before bed and then three or four more times around ten thirty which is what prompted this post that I am writing while I eat ice cream and smell my vomit scented fingers with each bite because the smell just does not go away for at least 24 hours.  This kind of vomiting is not something we have seen in quite while but I hear there is a stomach bug going around.  Her temperature was very low which concerns me.  We will see what happens tomorrow.  Keep her hydrated.  Keep an eye on her.  I am worried about the mouth sores.  They are on the inside of her cheeks on both sides.  She says they hurt. 

Friday night we went to a wedding.  As I was finishing up a training that afternoon I was talking to a new friend and colleague about how happy we are in our marriages.  Recognizing marriage is not perfect and there are bumps in the road, we both said that our wedding days were the most happy days of our lives and our husbands were our greatest supports.  Watching the beautiful young couple celebrate their marriage that night, dealing with some bumps in the road, I thought about our conversation. I love going to weddings with Chris.  I think about the day we got married.  How he smelled, what it felt like to hold his hand.  When we go to weddings now I think about how he smells, how it feels to have his arms around me and to have my arms around him. I also think about what it will feel like in the next twenty years, to have him by my side.  To know we weathered these bumps in the road, to know we never gave up.  To know that our kids will have a model of love and friendship and communication.  A model of how to take care of someone in sickness and in health. 

I could never live this life without Chris.  Tonight after I cleaned dried, crusted vomit from LillyAnna's face and put nice, clean pajamas on her while Chris changed her bed for the second time; neither of us complaining, both of us soothingly talking to her and telling her everything was ok, my baby girl wanted her daddy.  She crawled into bed, gave me a kiss, said, "I love you Mommy.", curled up into a little ball in her bed and asked for her daddy.  We could not, and would not want to, do this alone.

Weeds Find a Way

“I wish I could tell you how lonely I am. How cold and harsh it is here. Everywhere there is conflict and unkindness. I think God has forsaken this place. I believe I have seen hell and it's white, it's snow-white.”
― Elizabeth Gaskell, North and South    

I just do not understand life.  If you try hard, very hard, you should succeed.  If you love.  And I mean love a lot, you should be loved back.  If you want something, want something so badly you get shooting pains up and down your arms, you should have it.  If you are kind and giving, people should be kind and giving back to you. If you are good, good things should happen. 

“The prince is never going to come. Everyone knows that; and maybe sleeping beauty's dead.”
― Anne Rice, The Vampire Lestat

The problem is, that is not how it is.  In fact, sometimes it seems as if the world turns in the exact opposite direction.  And guess what?  It hurts, and it is hard.

“I need to be alone. I need to ponder my shame and my despair in seclusion; I need the sunshine and the paving stones of the streets without companions, without conversation, face to face with myself, with only the music of my heart for company.”
― Henry Miller, Tropic of Cancer     

Unfortunately I do not have the time to be alone and right now a vacation with my husband, even just a few days, sounds more glorious than being alone anyway.  You get the idea though.  A chance to catch my breath, a chance to regroup and you know what?  Chris could use it too.  Right now it feels like the hits just keep on coming.  We are trying.  We are trying to keep our heads up, trying so hard to stay positive.  But it is so hard to watch her vomit over and over again after feeling so good for a few weeks, or watch the pustules pop up everywhere after not seeing any, or see Chris and Nettie start to feel the affects of the stress.  We are trying.  Years of this gets exhausting.  Then there is the rest of life.  As long as this goes on, the rest of life becomes more and more heavy.

“When I despair, I remember that all through history the way of truth and love have always won. There have been tyrants and murderers, and for a time, they can seem invincible, but in the end, they always fall. Think of it--always.”
― Mahatma Gandhi

...they always fall.  I will remember.  Ghandi said so.  I am choosing to believe it is true.  I have no choice. 

I love you Chris.  We will get through all of this, together. 

You Rest Here With Me

So our girl is not feeling well.  All of a sudden, out of no where, she started having a lot of pain.  We were planting flowers out back, the twins were off building forts with the table and chairs on the deck.  Lil insisted on helping me water the plants as I put them in the ground.  I knew something was wrong when she pulled up her folding chair and told me she had to sit down in between each one because she had 'owies'.  You would think she would have let me help with the watering can but that is only something you think if you do not know Lilly. 

Since then, she has been having some pain (which seems to be controlled well by an extra shot of  Meloxicam in the morning), her hair is falling out a bit, she is vomiting daily and her stool is that whitish green color again.  What could be bringing on this flare?  She has no cold symptoms or other signs of illness.  The answer is: I have no idea.  so we will keep a close eye on this baby girl.  I will cuddle her and love her and so will her daddy.  And we will hope this is short lived. 

 

Meet Me at the Moon

 

It has been quite awhile since I have written a post.  I have been reflecting on why.  Is it because there are two people who  have hurt us recently and I am trying to protect us by staying private?  Is it because I have allowed myself to become overwhelmed by life?  Is it because Lil has actually not had any emergencies and I am afraid to invite the devil?  Or is it because when I am hurting I quickly fold up inside of myself like some kind of child's attempt at origami? 



These are questions to which I do not have answers and frankly it does not matter.  I have been a hermit crab curled tightly in his shell, an ostrich hiding his face in the sand.  Look, a person can only take so much.  You are all so wonderful.  You tell me all of the time how I have such a positive attitude and that I am so strong.  I will tell you that it is not something I try to do.  It is something that comes easy to me.  If you follow my story you know that my mother died three weeks before the twins were born.  She and my father (along with the rest of my family) taught me well to love life and see the beauty in it. 

Lately though, life is very heavy.  I cannot seem to lift the boot of my dive suit and take that next step (remember Cuba Gooding Jr.?).  Even now, as I write this post, I am stopping every 3 minutes paralyzed by my own feelings of inadequacy.  I am just. trying. so. hard. And nothing is working out.  Not with my career, not in my home, not with my kids... nothing.  I learned this week that so much of stress is about perception.  Stress can be good and it can be bad depending on that perception.  Right now my stress is of the bad variety.  Like a pesky little insect problem, it is wreaking all kinds of havoc in my life.  This is only one layer of the problem.  The guilt is the real monster.  If the stress is the pesky problem, the guilt is the structural damage. 

I am a problem solver.    I have a plan.  Go back to the therapist.  Alana is going to set up the calendar on my phone.  I am going to take on more work this summer to help with finances and the learning that goes with my work.  The list goes on. But here is the bottom line:  I am worried about Lil.  She has her good days and her bad days.  She has a lot of pain in her joints.  She tells me her mouth hurts a few days a week and that she cannot eat. 

I still cannot get her vaccinated.  She cannot go to school.  The longer she goes without any big issues The heavier my dive suit feels, the darker and deeper the water looks.  This is not something I am able to control.  Don't tell me not to worry.  She is my child.  She has a horrible disease.  It is my job to worry.  I am her doctor in so many ways.  Dr. R would agree.  He is the expert in medicine.  I am the expert in her.  That is not to take away in any way from all things amazing, learned and knowledgeable that are Dr. R. 




Here is a story that highlights something I want you to understand.  People in our lives, those that love us, want us to be normal.  In return, I feel pressure to be normal.  We are not normal.  That is ok. 

          I recently went to the wedding of my very dear cousin.  She is the kind of cousin who you have memories of throughout your entire life, she remembers every stage- the good, the bad, and the ugly.  She is the kind who really understands you even though you do not spend much time together.  A certain song comes on, you can catch each other's eye and you are instantly transported to being eight.  Everyone else was spending the night at a hotel the night of the wedding including my dad and stepmom and lots of aunts, uncles and other cousins who fit in the same category as the cousin described above.  You all know how in love I am with my dad and he was really pushing for me to stay the night, they even offered to share their hotel room.  I made up some excuse about having too much to do... over and over again.  When the mother of the bride asked why I was not staying I told her I did not feel comfortable leaving the baby.  She nodded in understanding but I stood there stunned.  I had not realized until that moment this was the reason.  I had lied to my father (unintentionally) because I knew he would tell me it was ridiculous.  But it is not.  I cannot just leave her on a whim.

 

 

This is a phenomena I notice happening more and as time goes on; me trying and trying to pretend that we are a normal family, that Lilly is ok and that I can go on with life.  The truth lies somewhere in the middle.  We can live a normal life at times and at times we cannot.  The weight, the pressure, comes from the fact that the decision of on which side we land lies with me.  With LillyAnna that can change within the hour.  She will be playing outside having the time of her life when suddenly she needs to rest. 

 

 

Or she will wake up in the morning feeling awful and that is how our whole day begins.  OUR whole day, not just me but my six year old twins and my husband and me. 

 

 

Or she can be just wonderful all day long.  She will eat and play and be happy.  Or she can do an activity that will wear her out.  She likes to do some kind of gymnastics poses,  I do not know where she learned them.  She calls them her "moves": I am going to do my moves.  The other night she was facetiming with Poppy and doing her "moves".  Afterwards I put her in bed and she told me her elbow hurt. I said that maybe she bumped it.  She said (with the saddest little three year old face ever) "No mom, I just cannot do my moves anymore.  They give me owies."  I have not seen her do her "moves" since. 

I get to cuddle with this adorable, tenacious girl every day.  I get to be a part of her world.  Below are pictures of her planting a bulb.  It is to a flower often called the resurrection Lilly.  Her wonderful Aunt Tina  bought it for us.  In my past life I have overcome struggles and moved on; in this life I resurrect myself over and over again.  Each time I learn a lesson.  Sometimes I am a slow learner.  This season's lesson is forgiveness.  I am forgiving myself.  I am resurrecting myself.  Right now this is all I have to say about that except that to move forward we all have to forgive.

 

Lil is three.  My only hope is that she is as forgiving.