Harold and the Purple Crayon

There are moments in life that just simply freeze themselves like snapshots.   Some  are happy and some are not but all of them are important and unforgettable. 
The moment in sixth grade when I first saw the girl who would end up being my life long friend.  She had permed hair, coke bottle glasses, a big smile and she was absolutely beautiful. 
The single clump of dirt sitting on top of my grandmother's coffin.
The leafless tree outlined by the sun on the side of the road when my father told me to pull over so he could tell me my mother had just died. 
Chris and my hands intertwined and how his freckles stood out. 
The look on my very best friends' faces as they gave me a champagne toast before we walked down the aisle on my wedding day. 
The tip of a needle slipping into LillyAnna's skin.
The pure pleasure in my father's eyes when he is dressed as a mummer. 
My mother and father standing at the kitchen sink doing dishes.
My small hands in a bowl of ground meat mixing meatballs with a bowl of warm water next to it (which my grandmother did because I complained that the meat was too cold).
A black and white fuzzy ultrasound picture of a baby sucking its thumb while its twin sister unknowingly kicks that thumb right out of that mouth! 

So many things have happened in the past year and a half that have forever changed the landscape of my life in ways I never imagined possible.  In the blink of an eye I am become a new person.  Today I wrote to Ellen DeGeneres to share my story with her in the hopes that she will have me on her show.  Who am I?  This weekend I spoke to a woman who wants me to do baking on a large scale for her corporation.  She thinks I make the best cake she has ever tasted and she is in the business.  I am the girl who fifteen years ago was the butt of many jokes because although I could cook, I could not even make brownies out of a box.  Where have I gone?  I have a master's degree in Educational Leadership and student loans coming out of my #@$ but I am bartending.  What is my name? 
No one would call me religious but I heard a preacher on the way home from work tonight quoting Job. 
Job 7:11 Therefore I will not keep silent; I will speak out in the anguish of my spirit, I will complain in the bitterness of my soul.
I appreciate you listening, your support means more than you can possibly imagine.  Some of you I know well and some of you I have never even met yet you follow this blog and find empathy in your heart for me and my family.  Some of you have sent us gifts... very generous gifts.  I have never been very good at accepting gifts or support.  I like to be the one doing the supporting and the one doing the gifting.  But this is part of the new me.  And so I thank you.  In the moments when the only way I can get through the day is to repeat "Gina, just put one foot in front of the other, ok, now the next" until the day is done it is your support in its many forms that gives me the energy to move forward.  Your generosity gives my soul the strength to keep going.

Recently we were invited to Longwood Gardens with the Kelly Ann Dolan Fund (http://www.kadmf.org/) through our Chronically Cool Families Support Group.  This family had two daughters.  Both fell ill with rare forms of cancer.  One did not survive.  The family started the foundation in order to help support families in their struggles through chronic illness.  Their mother, Peggy was in attendance.  We all gathered after a beautiful outdoor lunch for a picture.  Gathering this particular group is not easy and as we were saying 'cheese' I happened to glance to my left.  In so doing I added another snapshot to my collection when I saw Peggy look back at the gathered families and smile as a tear slowly made its way down her face.  In that tear I saw her pain as a mother who worried, watched her baby suffer, buried that baby and then built a new life for herself on the other side.  

I do not know where all of this is going to take me.  I hope it is somewhere good.  Right now I know that I am going to take care of that baby because I am her voice and I am her advocate.  Now matter who I thought I was, I will do whatever I have to help her and create the best life possible for this family.  Thank you all. 

Mia and the Too Big Tutu

My daughter Antoinette is 4 years old. One of the bright sunny days we were enjoying last week before the downpours began she was wearing a pair of Capri pants and I thought to myself "those fit her very nicely, I need to check the size." Low and behold when checking said size my four year was sporting 12-18 month Capri pants and they fit beautifully. Nettie is thin. She always has been. She was born at four pounds versus her twin brother's 5lbs 11ounces because (as the doctor said) they did not share well in utero. Nettie spent ten days in the NICU and fought me tooth and nail with breast feeding. The battle raged for a good month before she gave in. Although she likes her sweets, her choices at a birthday party usually include the crudités and cheese or grilled chicken if available. Needless to say she is thin. We hear about it all the time and the advice on how to make her less thin has been given in copious amounts since day 1. However, since day 1 every doctor she has ever come in contact with has said the same thing about her weight. Nettie's weight is fine. She is growing appropriately and ALWAYS has. Eating raw vegetables and healthy proteins is a good thing!

This week I put Lil in a onesie that she wore for her first birthday party. It was too big. As the week has gone on I have been putting clothes on her that used to fit and watching as they get too big and fall off of her now thin frame.  I am talking about clothes she wore well over a year ago.  Time and again I see her grow too small for her clothes.  I cannot tell you how this tears at my heart.  There is just some kind of instinct in mothers that makes them want to fatten up their babies.  Or maybe it is just Italian mothers... or maybe it is just me. In any case, LillyAnna loses weight or does not gain any at each appointment and it is a problem. 

 

She continues to grow taller and that is what is saving us from an NG tube right now.  That is a tube that we would insert through her nose and down into her stomach each night.  It would slowly feed her throughout the night and in the morning we would take it out.  There are many issues with this as you can imagine.  The biggest being that she is not going to keep it in and will probably need to be held all night.  We cannot use normal tape on her face as it irritates her and can cause lesions.  A close second is that the "food" is still going into her stomach and therefore still has the potential to cause vomiting.  Third, we could cause damage inserting the tube each evening which could possibly cause lesions inside.  Hopefully it will not come to this but she has to start gaining weight which is not happening right now. 

The plan at this point is to meet with GI again and possibly do another scope as it has been a year and we still cannot determine the cause of her constant vomiting.  Dr. R would also like us to have a CT done of her head.  He is not terribly concerned about there being a tumor there but it is the only thing we have not checked and he wants to cover all of our bases.  We saw rheumatology today.  This appointment filled me with mixed emotions.

If I had a nickel for each time I heard the words "but she looks so healthy!" I would never have to
work again.  It is hard to believe that Lil vomits multiple times a day, does not eat, has painful pustules that pop up all over her body, gets very uncomfortable, complains of pain and feels lethargic.  She is just so happy and lively most of the time.  However, as the wonderful doctor was examining her today she pointed out to me things I did not notice before.  Like how LillyAnna favors one leg over the other, how she cries out when her leg is bent at the knee, how she does not bend her leg when she walks and a host other small things I never noticed but are signs that the pain I believe she is in is real.  That validation was just priceless.  However, finding out that the doctor believes Lil could have arthritis is terrifying.  It makes sense and we knew it was a possibility but to know that she already has arthritis and it will not go away for the rest of her life makes ME want to vomit.  We took some x-rays today and will talk to the doc on Tuesday to find out more.  I will be better about keeping you updated.  Your support means more than you will ever know.  I am not good at showing it because I feel stunted by the idea that I can never repay you, can never show you how huge your support is no matter what form it takes and I am sorry for that flaw. 

 

I also want to say welcome to the world Antonella Rose Ventura.... our new cousin. 

We love you so much:)

Quick Update 6

We saw Dr R today because of Lil's iron deficiency anemia and the new things I am seeing with her skin.  Her temperatures have continued to fluctuate throughout the day.  She is getting new pustules quickly, they get very red and swollen and then go away almost completely on their own in a matter of a day.  She continues to throw up each night usually more than once and usually a few times a day too.  The biggest problem today was that she has lost more weight.  She did grow in length and that is a good sign that she is getting enough nutrition but losing weight is an issue.  I have also been concerned about dehydration because I now have to limit her milk intake and that is all our stubborn little girl will drink.  I am also trying to get her off the bottle but after three days I had to give in on something and today she drank about 15 ounces of pediasure but she won and drank them from bottle.  If she continues to accept the pediasure (something she has refused to drink in the past) that will hopefully help with her nutrition and weight.  I am afraid once she realizes she is going to have her precious bottle available more often again she will get mad about the pediasure and begin her strike once again. 

Dr. R is going to get his assistant on the NIH since I am not allowed to contact them to find out what is going on and if I need to I have Senator Carper's office still willing to help.  We are going to keep a food diary for three days to see if she is even taking in enough food.  Dr R is wondering whether she is simply not taking enough in or if she is not absorbing the nutrients from the food that is making it to her stomach.  We are also going to get weights from her regular pediatrician and plot them on the growth chart from the hospital to help us determine how dramatic the weight loss really is based on her whole history. 

Dr R did not look happy today.  Her blood work did not look bad from what I could tell except that her sed rate is climbing up little by little.  We will just have to keep an eye on things for now and stay the course.

Little Miss Birthday

LillyAnna,
I am not sure how someone who cannot speak in full sentences is able to inspire me but you do. Today is your second birthday. We celebrated with a beautiful birthday party surrounded by the people who love you the most. Last year we were celebrating in the hospital.  I have had to make some drastic life changes. In this last year, your strength has inspired me to do and be things I have only ever hoped.                                                                                                          Last year you were pretty obsessed with Monsters Inc. It is funny, your brother and sister were pretty much not allowed to even see a TV until they were two but you had already had a favorite movie at one! Of course, you have extenuating circumstances. Throughout this year you have stayed in love with Mike, Sully and Boo but now that the year is ending you are also enjoying Elmo and Mickey. Actually, Mickey is in the lead right now! Which is good because we are supposed to be going to Disney as a treat from your grandparents later this year. I hope that goes through for your sake. You deserve to smile.

You also really enjoy singing the Batman song. For Halloween this year you picked out a pink batgirl costume. I feel like that sums you up pretty well. You are not afraid to love what you love and it is a mixed bag. You will sit and play dolls with your sister and then turn and play trucks with your brother. I will be in the kitchen baking and turn around in response to "Mom!" only to see you smiling up at me with play high heels on your feet (usually mismatched), a Batman cape on and a princess crown holding hair in a birds nest on top of your head and pushing a good amount down into your eyes grinning from ear to ear.

You do not eat very much but when you do it is all about chocolate.... chocolate, chicken (which you call eggy), cucumbers and macaroni and cheese. Unfortunately, you throw most of it up. You also love my buttercream icing. One of my favorite things is when you sit in your high chair (although you  boycotted the high hair about a week ago) and I give you spoonfuls of buttercream icing while I bake. You get so excited and happy each time I hand you the spoon and you take your time licking the icing with your eyes trained on Monsters Inc. You have even started potty training and just today you went the whole day in panties. You had three accidents but you are only just 2! When the doctor asked why I  was potty training you I told him you insisted and that is exactly what happens with you. You insisted on being potty trained. You insist on continuing to use a bottle.  You insisted on giving up the high chair. You insist on enjoying life.

 

We spend a lot of time together, you and I. For the past year I have been on a leave of absence from teaching to care for you and this summer I resigned my position with the school district. You need me and it is that simple. You cannot go to any kind of daycare because the medicines you are on weaken your immune system and you have not had your vaccinations since six months. But really your disease just keeps surprising us and there is no other case like yours that we can find. So you need me. In order to make things work I am bartending and baking. It has been a hard transition. 

It goes against everything I did with the twins but I rock you to sleep each night.  You know how to put yourself to sleep and have been able to since about 6 weeks but you throw up so much at night that it does not seem right to make you go through that alone.  We are home together all day and while the twins go to school a few hours a day, it is just you and I.  I also rock you to sleep at naptime.  If I go to the store, you go too.  If I am in the bathroom, you are there too.  I can't even take a shower without you opening and closing the door every two minutes.  If I am being completely honest, I don't mind at all.

Your brother and sister who are now only 4 years old take such good care of you.  Whenever they are not around we have roll call. "Where Bubby?" "Where NetNet?" Where DaDa?"  They worry about you so much.  With all of that worry and all of the attention you get, one would think that they would be jealous or angry with you.  I have never seen Nettie get aggressive with you, ever.  No matter how mad at you she gets.  Your brother gives you a smack with his gaga every once in a while but nothing major.  Today I caught him holding his ears when we went to get blood work.  I was wondering what he was doing until a few minutes after they stuck you he took his hands away and said, "Is she done crying? Is she ok? "  Your sister swears she knows how much you threw up each night because when she tries really hard she can see through the wall to check on you.  They make sure you are in your car seat correctly, give you their last piece of candy if you are crying, and always check that you have a space to sit. 
I am so sorry.  I can't fix this pain for you and I can't figure out how to help you.  I am the one who is here with you all of the time and we are so close.  When you are in pain I can tell and when you do not feel good I can tell.  It is all up to me to stand up for you and to make sure everyone knows what it is like to be you, what you are going through.  I don't think I do a very good job.  Doubting myself is just something I have always done.  I wish I could say I am one of those moms who is like a mother tiger and springs into action when her baby is in need; but at this I fail you.  I allow people to talk me out of what I know in my heart to be true.  Being over sympathetic to my kids has been a fault for the last four years.  I guess there are worst faults in a mother.  But with you I know when I am right and most times I am right.  You just play it off so well.  The distractions of the world invigorate you.  You steal energy from being around people and it fulfills you.  At night when we are alone and you are squirming in discomfort from who knows what pain or when you are asking  for your bin to throw up for the umpteenth time, I know I was right.  Your love of life and your strength is what gets me up each day.  It is what keeps me going when I feel like the world is collapsing on top of me.  Because of your illness I have changed my entire life and my own strength astounds me.  But it is all for you and because of you.  Your brother and sister deserve me too and their annual birthday letters will show their special connections to me but this is your letter.  This is your second birthday.  I am so afraid for your future but I am so enjoying your present.  Happy Birthday little one.  I love you. 
Mom

Quick Update 5

Symptoms of iron deficiency anemia

By Mayo Clinic staff

Initially, iron deficiency anemia can be so mild that it goes unnoticed. But as the body becomes more deficient in iron and anemia worsens, the signs and symptoms intensify.

Iron deficiency anemia symptoms may include:

·         Extreme fatigue

·         Pale skin

·         Weakness

·         Shortness of breath

·         Headache

·         Dizziness or lightheadedness

·         Cold hands and feet

·         Irritability

·         Inflammation or soreness of your tongue

·         Brittle nails

·         Fast heartbeat

·         Unusual cravings for non-nutritive substances, such as ice, dirt or starch

·         Poor appetite, especially in infants and children with iron deficiency anemia

·         An uncomfortable tingling or crawling feeling in your legs (restless legs syndrome)

·         Shortness of breath

·         Headache

·         Dizziness or lightheadedness

·         Cold hands and feet

·         Irritability

·         Inflammation or soreness of your tongue

·         Brittle nails

·         Fast heartbeat

·         Unusual cravings for non-nutritive substances, such as ice, dirt or starch

·         Poor appetite, especially in infants and children with iron deficiency anemia

·         An uncomfortable tingling or crawling feeling in your legs (restless legs syndrome)

Now I know why she has been grabbing at her legs and feet and saying owie. And her head and mouth and saying owie. Why she has not been letting me put her down much or sleeping well and why when I do hold her, she is putting her head on my shoulder or squeezing my neck so hard it makes me want to cry (or take a picture). I know why she has been falling a lot too. Blood work today shows that Lil has iron deficiency anemia. 

The doc says not to freak out. At least I know I was right and something has really been bothering her.  I do not know how serious this is yet.  It could be just because she drinks so much milk.  That is what the good doc thinks it might be.  It could be that she is bleeding internally so we are going to get a stool sample Tuesday to make sure.  Of course any issue with red blood cells makes me worry about lymphoma which is one of the possible side effects of Humira. 

I have to talk to Dr R about if this could also be the reason her lesions are acting up and her temperature has been going up and down like a roller coaster.  Seriously, her temp will go from 98.9 to 100.6 back to 99.9 in a matter of two hours.  Her lesions are acting up with the same speed.  I actually sat and watched three pustules pop up, get red and sore and pus filled again within hours and then go back down again in the next 24 hours.

The Little House

I do not like to complain and I do not like to feel weak.  It seems to me that the more you complain, the worse things seem.  Then they actually get worse.  It is not just about complaining out loud either it is also the complaining you do in your head.  I try to combat this cycle by thinking positively and comparing my situation with others that have it much worse.  This usually works for me.  Not wanting to feel weak is a separate issue but works in the same way.  If you start down the slippery slope of helplessness, you are at the bottom in the blink of an eye.

My problem right now is that there is so little room for error. 

The smallest things (or what has generally counted for small in my mind) now nudge me with their gnarly little toes down that slope as I am grasping and clawing for dear life just to stay where I am.  A good friend reminded me that I started this blog to help myself.  It is hard to be honest.  I want to be that strong, positive person even here where there is a strange sense of freedom and safety but I also feel that nudge and I will do whatever it takes not to slip further.  If that means talking about how we have no money or talking about how weak I feel or talking about how I am feeling sorry for myself right now than that is what it means.  I will rise above it. 

Life sucks right now.

I have given up my career (yes temporarily).  It is hard for me to not be a teacher.  I have been teaching for thirteen years.  Although it was not always wine and roses, it fulfilled me and made me happy.  I could go to bed at night knowing I was doing good.  The notes, emails and comments I have received from former parents since I announced my resignation are heartfelt and they have one theme in common… I did good and I made a difference. I truly believe that all jobs have their importance and meaning.  My husband is a plumber for example… I mean really, where would we be without toilets and running water?  I find meaning in my current job of bartending and serving.  I look at each table or customer I have.  I think about what brought them out to dinner, what trials and tribulations they have suffered, what they might be celebrating and I think about how I can make that experience better for them.  Or even how I can make their day better by simply being kind or making sure they have full drinks or giving them good food that will nourish their bodies and souls and make them feel good.  I can hear the groans now!  I know it is cheesy and over the top but it is really what I think so just suppress your disbelief and keep your eyes in your head.  But making an impact on a child’s life is special and it gave me meaning.  For now, I have to give that up.  I also have to give up the money that goes with it which is very scary and very hard and makes me a little resentful.  I do not want to have to tell my son that he cannot get the Marvel Comic ice pops because they are $3.99.  But the truth is, I can still get him the Jolly Rancher ones that are on sale for a dollar and that is something.

I have a headache twenty four hours a day, seven days a week.  I take pain killers for them.  The amount I have to take just to get through the day without vomiting just reminds me of my mother's addiction which eventually killed her.  The pain makes me irritable and it never goes away.  That is not exactly true.  It went away for about 15 minutes the other day and I was so excited.  If you have ever taken hard core pain killers you know the joys that go along with them.   Constipation, stomach upset, etc etc.  Good times my friends, good times.  The stress and exhaustion from worrying about Lil and money and the twins and my husband and the late nights three times a week are causing all sorts of other stuff to go wrong with my body too. 

My daughter is sick.  LillyAnna still vomits every night.  She is no longer vomiting twenty times a day and that is good.  But I know, and this is not me being negative, it will come back.  And if the pattern stays true to form it will be even worse next time.  We have avoided doing something more drastic because she gained 0.1 ounce at her last appointment.  When I asked Dr. R what else we were going to do he gave me a look that said "this is as good as it is going to get Gina".   The medications we are giving her are awful.  She is in a good cycle right now but a good cycle still means elevated temperatures, complaints of pain in her arms and legs, vomiting, bloodwork, hair loss, injections, medication schedules, trouble sleeping because of some kind of discomfort and the great unknown of this whole disease.  This all starts to seem like normal but when I tell someone the story I realize how truly remarkable it is.  She is the seventeenth reported case in the whole world!  We know nothing.  There is no help out there for us.  No website, no information on the internet, no "this is what you can expect", no foundation, and the only support group has become a bit of a life line and that is Chronically Cool Families group at AI or what I like to call The Island of Misfit Toys. 

I was almost in tears there the other night.  Sometimes I just feel like maybe I am crazy.  People look at me like I am nuts when I tell the story, I say she is not feeling good or describe how we know NOTHING.  Especially when she is running around looking and acting like the most perfect baby alive.  I shared this during the group and I will be damned if not every parent sat up a little straighter and started nodding until finally my good friend said, "Gina, we all feel that way."  At least I knew I was not crazy but it is also scary that my situation fits in with those situations because those kids are sick.  And then I remember that my kid is sick.

I feel guilty for complaining.  My baby goes home from that hospital.  My baby is not dying.  She can walk, she can breath, she eats, she is smart, and on and on.   Then I chide myself for feeling guilty because I know that she is still sick and that this is still traumatic to my family.  My son is a mess with worry.  How does a four year old who is smart and intuitive handle all of this, what is it doing to him? I don't know and I hope he will find a way to channel it in a positive way but I still worry.   You can see it in his eyes, he knows too much.  The therapists tell me not to talk about it in front of him.  It seems we forget too often. 

I am not who I used to be.  Listen.  I will be honest.  I am the friend who always forgets your birthday but buys you gifts that suit you for no reason.  I am the friend who will not call you back because I just simply forget but I know the ins and outs of your family and I pay attention.  I am the person who is over generous because I just like to make people happy.  Lately, I forget even more. Pay less attention.  Say the wrong thing.  REALLY never call back.  And has no money.  Who am I?

And even though we do not have the money for it we are having a big party for her birthday.  Last year we celebrated her birthday at AI and they did an amazing job of making it special.  But we were in the hospital.  This year we are not in the hospital and we are not in the same place we were so we are going to celebrate.  Thank you to all of you who are coming out to help us do that and thank you to all of you who are going to bring stuff (you will be getting a request soon grandparents! LOL!).  We are celebrating a very special little girl and her brother and sister too.  Just pray it does not rain and we do not fill the pool to bursting (we have VERY large families:)  Actually, let's fill it and make it the most fun party they have ever seen!!

I am sorry.  I am sorry I have to let you all buy me things, I am sorry I can't concentrate fully on the important things in your life.  I am so sorry I do not have the emotional energy to share your hurts.  I want to, I really want to.  This is just really getting to me and it is getting to my whole family.  It just keeps going on and I am getting so so tired.  I don't mean to give myself props but I play it off well.  I do not complain (save for this whiny post), I stay positive and I do whatever I have to in order to continue to give to other people and be the person I was.  Because of this and as time goes on, people are beginning to treat me as if my life is normal.  Like this is all a choice.  I cannot blame anyone.  I did ask you all to do just that and I stand by it.  I cannot continue to live life in crisis.  This is our life.  No matter how hard it is, it is life and we have to live it.  I am hoping that by getting this all out I will be able to get my head out of my ass, stop crying and feeling sorry for myself.  Most of all I would like to stop feeling angry.  I am angry and hurt.  It does not feel good.  I like it better when I can let things go.  So this is my rant.  I am letting go... right here and right now.  I am probably going to cry for a bit before bed but when I wake up tomorrow I am going to choose to have a better day and that is that.

This Is Not My Hat

Thirteen years ago, in July actually, I received a call from a man who offered me a job at Mount Pleasant Elementary School.  I had just graduated college a short time before and this was the job I wanted most of all.  During school, I had done a short placement in a kindergarten Gifted and Talented class with an experienced and amazing teacher.  I thought that school was the epitome of all that was good and holy. 

When I walked in the first day, that same man asked me to follow him into a burned out auditorium and told me to pick out my furniture with the warning that there were no lights in the room and to be careful not to fall into the holes in the floor.  This kind of stuff does not happen anymore at BSD but this was a long time ago.  I do not in any way want to give the impression that I was not taken care of but that is exactly what happened!  It was crazy.

My mom helped me set up my first classroom and encouraged me to follow the first rule of thumb in teaching... ask other teachers for help.  In asking for a stapler (there were no staplers in the burned out auditorium) I met a woman who would become a friend, and not a friend for awhile and then a friend again.  More than a friend actually, she is now my mother in law and the grandmother of my children.  She introduced me to my husband whom I also met at MPE. I had a bridal shower there, I had a baby shower there, celebrated thirteen birthdays, made amazing friends, learned so much about being a woman, and a mom and professional.  And this past year the school and the district went above and beyond by donating time so that I could have a paid leave of absence to take care of Lil.  And then went above and beyond again when the staff at MPE brought my family dinner and snacks every other day for months and then at least once a week for the rest of the year. 

There are so many things that stand out to me about that first year.  One being the fact that when report card time came, I had no grades.  I had been teaching my butt off and the kids were learning!  I don't know what I was thinking.  This would never happen now, I am not sure how it happened then!  I remember a little boy who looked exactly like Allen Iverson.  It took me a month to get that kid to come out from under the tables.  There was a group of Hispanic girls who worked so hard that year.  They went from not being able to read a word of English to writing a three page essay that was read at graduation. 

Over the years there are so many kids that I will never forget.  There was a little boy who we are pretty sure was high on cocaine (yes, in third grade).  We once had to restrain him for three hours and eventually we had to call an ambulance.  There was a little girl in first grade who had so much personality; a way of brightening up every day for me.  Her energy and spirit is something that is truly inspirational.  I worked with my long time team teacher and great friend to take students who did not know the letters of the alphabet to reading in one school year.  We taught kids who could not make friends to  learn social rules and have a group of friends by year's end. And I have made friends myself who are now more family than anything else. 

Each year, you have this group of bodies that walk into your classroom and you fall in love with each and every one. If you have ever fallen in love you know that it means being happy and frustrated and scared and excited and angry and hopeful and sad.  You find out what they struggle with so that you can teach them how to not struggle with it.  You find out what they are good at so you can teach  them that they are good at it and how important that is.  You bring a group of minds together to learn.  It is wonderful and it is exhausting.  And every kid deserves a teacher who can do it. 

That is why Chris and I know that I made the right decision when I resigned my position from the Brandywine School District this week.  We are scared and praying.  What it comes down to is that LillyAnna needs me.  I know more about this disease than anyone, even her doctors.  She cannot go to daycare.  Every day brings something new for LillyAnna and we never know what is going to come next.  Even ordering her medications is a balancing act; some are mail order and others can only be ordered a certain amount of time before they are administered.  It is going to be very difficult for us financially.  I am bartending and serving three nights a week to try and fill in the gaps. I also sell cakes which works out really well.  But these things do not even get close to adding up to my teaching salary.  I highly doubt that we are going to qualify for SSI.  To be very honest, I am not good at budgeting and neither is my husband.  My dad has spent hours with us already going through our budget and figuring out how we can make it work and what I have to make each week so we can pay the bills.  It is just so hard to worry about keeping three kids happy and fed and watching each penny at the same time... but that is the story of any parent or anyone on a budget for that matter so I know we can do it. 

 This past few weeks is a perfect example.  A few mosquito bites has sparked a cascade of events for her that is just ridiculous.  She is now on an antibiotic which has lowered her week long 103 fever.  However, she still has a rash all over her torso that just keeps spreading.  Her lesions are acting up again.  She is very uncomfortable and complaining about pain all over.  We are going to see Dr. R today but I am not expecting much.  Not because he is not wonderful but because I know how things go with her.  Out of frustration one night this week Chris said, "Why is this happening?"  My faith in God is not what it should be by some standards but I try so I gave the only answer I could think of: I think God is telling us we made the right decision.