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.

Quick Update 4

She sets herself up like this! 

LillyAnna's woke up with a fever of 102.8 this morning however her lesions look good.  So in this case, she had lesion activity before the illness.  Dr R has been wonderful as usual communicating with me all weekend and at all hours... I owe his wife a dinner:)  And a cake:) I have been pretty worried about LillyAnna this week.  This morning she also developed a rash.  I sent a pic to Dr. R and he said it looks like enterovirus.  This is a pretty common virus and she should be just fine in another week.  Online I read that it usually only has serious complications in infants, elderly and immuno compromised.  Unfortunately Lil fits into this last category but Dr. R reassured me by saying that he has only seen those complications once in his career.  I am going to choose to trust that even though Lil loves to fight convention!  The high temps are a little nerve wracking but as long as she keeps herself hydrated we will stay out of the hospital and so far she is doing fine.  Thankfully I do not have to work again until Saturday!

Lilly Lemon Blossom

Lilly has really blossomed in the last two weeks.  I have told anyone who will listen that I feel like she has gone from baby to kid overnight. All of a sudden she is speaking in full sentences, has an opinion about everything, understands and answers questions appropriately, and throws herself on the ground in a writhing kicking mess when she does not get what she wants.

Of course, with this, she is more aware of her disease which makes things easier in some ways and more difficult in others.  She knows when she needs to throw up and when she is done and she knows how to communicate that with us.  However, she also knows how to fake it!  The other night when I was putting her to bed she asked for the bin and started running her finger around the edge and singing.  I said, "Are you faking?" and she looked at me from underneath her impossibly long eye lashes and smiled.  She also knows more about her pain.  When she saw me setting up for her injection this week she started saying "no Mommy booboo" and then afterwards kept pointing to her leg and telling everyone "Mommy booboo".  Yes LillyAnna, Mommy gave you a boo boo and it is like a knife in her heart even right now, a week later. 

But this week we have even bigger problems.  LillyAnna has not been good especially the last couple of days.  It is nothing horrible, we are not rushing to the hospital but it is concerning.  A couple of weeks ago she had a wonderful time at her great grandmother's pool.  Unfortunately she got attacked by mosquitoes.  She does not respond well to mosquito bites normally (so easy to protect her from that in summer!).  The bites stay around for 2-3 weeks and turn into painful pustules.  This time however, it seems like her whole system is responding.  She has pustules all over her body and they keep popping up even in spots where she is not getting bitten.  They are not big but they were everywhere and two of them started to open up.  She is complaining of pain on and off all day and her temperature is fluctuating.  She will go from a normal temp and then it will goes up to anywhere between 100 degrees and so far the highest, 101.8 and then back down and up and down and up and down. She has been uncomfortable and not very happy.  Her hair, which had stopped falling out has started falling out again. 

 

The part that really knits my knickers (trying to be PG here) is that the inflammatory markers we usually follow are in the normal range.  It makes me want to pluck my eyelashes out one at a time. 

We did see our GI doc this week.  He asked a lot about Lil's vomiting and looked surprised when I told him she vomits up to 20 times a day.  Recently she has been vomiting two or three times a day but I told the doctor that these are the cycles she goes through with seemingly no rhyme or reason.  Each time she has a cycle of very frequent vomiting, it gets worse.  And then it calms down for awhile and comes back again.  The doctor ordered an Upper GI to make sure there are no anatomical issues we missed which came back showing there are no anatomical problems.  Another dead end.  He also wanted to check for pancreatitis which could be causing the vomiting.  A blood test determines elevated levels of amylase and lipase.  LillyAnna's lipase was elevated but not her amylase.  If she had pancreatitis we would expect both to be elevated.  I asked him if he was concerned and his response was simply "I think we need to check into it".  Cryptic... lol!  Dr. R said he is not too concerned because lipase can be elevated just from vomiting a lot.  So we had the ultrasound yesterday.  Lil was unhappy about it to say the least.  But the results were normal again.

Right now I am sitting her putting her to bed and she has a fever of 101.8. Every time
I take it, the temp goes up. I just gave her Advil so maybe she will be able to sleep for a bit. I am just so worried about her and so tired. Chris and I are in the process if making some very difficult life decisions. Everything has changed...our plans, our hopes, our dreams, our security and, most difficult, our daily lives. We recently had our year anniversary of dealing with this disease. It has been a whole year and I simply do not know if we are in a better place or a worse place. Right now, we are just doing the best we can with the knowledge we have and making the best decisions we can.  In the meantime, Lil is Lil!