Giraffes Can't Dance

My mind right now feels like the end of a hurricane.. or maybe I am in the eye and I don't even know it.  At the present moment Lil is laying on the couch not crying for the first time in the last 24 hours.  Nettie is lying on my back and it feels so nice that I do not want to get up to get my coffee (but I really want my coffee).  All of us are watching Aladdin on the Disney channel and for once they are not showing a commercial every five minutes.



Life is changing around here.  I am leaving my job at the restaurant and I cannot tell you how sad it makes me.  There are a thousand adjectives for sad:  unhappy, dejected, despondent, blue, cheerless, dismal, down, lugubrious, melancholy, out of sorts, sick at heart, mournful, morose.... but sad, sad is just the word that describes it best.  I walked into Redfire one year ago to talk to the General Manager of Platinum Dining about a job.  He and I had know each other 13 years before when I was a server at Dome and he was a manager.  In between I had been teaching first, second and third graders and raising a family.  A very good friend of mine and manager at another Platinum Dining restaurant, Eclipse, told Kelly that I was looking for a restaurant job again because of LillyAnna and our situation so Kelly agreed to interview me.  When I sat down with him at the high tops he asked me the general interview questions and then said something you would never hear in the public school system (I am sorry but you would not) 'Gina, you did an amazing job when you worked for me before.  If you need a job, I am going to make sure you have one.'  I started to cry.  If you know Kelly, it made him pretty uncomfortable!  But it was something I will never forget. 

And then it got even better.  The group of managers, servers, cooks, customers and busboys (most of whom do not have kids of their own) took me and my family under their wing and just cared for us.  They understood when I needed to check in at home, they understood when I needed to change my shifts or when I was a little distracted.  They knew when I needed help cleaning up at the end of the night because I was working on my third night of two hours sleep and my third day of a migraine.  They listened to my stories when they had stories of their own.  They became my friends.  I have heard them say that I became their friends too by listening to their stories, by giving advice, by smiling and being excited to see them.  I have heard them say that I gave them excellent service or just gave them the space to take a deep breath with a good drink and good food which was exactly what they needed. 

I have had intelligent conversations with them about God, food, wine, liquor, relationships, love, motherhood, sickness, fatherhood, marriage, war, death, suicide, and being drunk. I have laughed until my stomach hurt and I have cried with these people.  Some of them proofread papers for my work with the House of Representatives, put me in position to be in places with Lil that we got real help, gave us exorbitant amounts of money in tips, gave us as much as they could, gave us a listening ear, bought our t-shirts, encouraged me to make smart moves in my life, gave my kids candy:)...

I was born to be a teacher.  I love teaching.  As my husband says, it is in my blood.  Teaching teachers this summer has been amazing and as I have read my evaluations and heard the things experienced, inspiring, passionate teachers have to say about what I taught them I know that I am making the right move.  But to tell you the truth, I love bartending too.  I love seeing people sit down with an expectant look or sometimes a frazzled look, mixing them a drink that is just right and maybe listening to how their day was and seeing that look of pleasure and relief come across their face as they take that first sip.  Or talking a customer through the menu and helping them pick just the right thing.  I know it is stupid but it makes me so happy.  It is just like cooking for people.  I still get to feed them, I still get to fill them up. 

Now listen carefully: I do not want you to do anything about this, but this blog is and was created as a place for me to be able to share the reality of living with a chronically ill child.  Money is one of those realities.  The one thing I am very worried about is money.  The University of Delaware job is a dream.  I just love it so far and I do not see that changing.  More than that, I am hoping that working during the day will be better for me physically.  Bartending was not good for my migraines and I was taking more and more pain medication.  If you do not know, my mother died from a prescription drug overdose so this is not something I want to mess around with.  When I bartend I only get a couple hours of sleep and that is a migraine trigger for me.  The U of D job will be better for the kids starting Kindergarten; yes, my babies are starting kindergarten.  They need me to be around to get them ready for school especially when Lil is not having a good time.  It has such an effect on them (especially Chris).  This way I will be around to do homework every night, take Nettie to dance, pack lunch and most of all, not be exhausted and have a migraine all day for three or four days in a row. 

I am also hoping to do more work for the other company that teaches Responsive Classroom, the Northeast Foundation for Children.  They have offered me more work, I am just waiting for the actually work to come in.  This is similar to U of D.  I have been told work is coming, I am just waiting for it to come in.  The problem is, most of our savings is drained from our wonderful (hear the sarcasm?) trip to NYC and other Lil things that have come up, so until I see those jobs on my calendar I will not be able to breath. 

So what are we going to do?  Well... Redfire comes through again.  They told me that I could come back to pick up shifts if I need them.  What a wonderful safety net to have! It is not perfect but it is something.  We also need to re-negotiate our budget since everything is changing AGAIN.  It is just so hard.  It is not that you feel angry with Lil.... I mean, how can you?  But there is an anger and frustration there that is big and ferocious.  If it were not for this horrible disease not only making my little baby girl have so much pain but on top of it turning our world upside down over and over and over again we would be in such a different place.  There is a big part of me that likes the place we are in, I have learned and have grown so much.

 Humira shot so I am hoping that will make things better.  Methotrexate is Monday and I am not looking forward to it.  It has been making her very sick lately.  We have started premedicating her for it but it is not helping much.  She wakes up in the middle of the night with a very high fever and vomiting. 
She has been doing so well until this week.   Quite a few pustules popped up and she just had a lot of pain, and I mean a lot, swollen fingers, swollen toes and she has not really eaten in about 4 days.  But she was due for her









Tomorrow is my last bartending shift at Redfire.  If you would like to come see me off, I would love to see you!  I think Chris is going to come by with the kids around 5pm.  It is best to come a little early on Sundays. 

Redfire Grill and Steakhouse
400 Lantana Drive
Hockessin, Delaware 19707
302.235.2600
 Sundays hours 4-9

An angel descended on us this week just when we needed it.  I have actually been talking to God a lot lately.  Asking him to guide me. My religious beliefs are considered odd by some but they are mine and I do pray.  The gift we were given this week, I believe, is a sign that I am on the right path.  I guess only time will tell.  I am choosing to "take a leap of faith" as my friend Brittany put it.  A leap of faith is scary any time but even more so when you have a group of little ones counting on you.  But here we are, counting on a leap of faith.

Mending

A friend of mine recently described to me what it felt like for him to experience arthritis pain as a twenty something.  This person is a strong man, the kind of man who played sports.  The kind of man who you look at and it seems they can just do anything.... the ones who are so attractive and are just at that point in their lives where they are so full of life and energy that it is practically bursting out of them.  He told me that he had to crawl to his bathroom and was crying like a baby because the pain was so bad.  He called his mother and had to have her come and help him up.  He could not lift himself.  That is my baby.  That is her pain.  She looks so healthy.  I know.  But she is hurting.   

It was two years ago this month that a usually easy going me got her first lesson in how to stand up for a chronically ill LillyAnna.  We had been watching lesions grow on my then 9 month old baby's beautifully soft and until then perfect skin every time the nurses tried to put in an IV.  Finally a tech came up from somewhere and said they where going to try to put one in her skull.  They wanted to shave a spot on her head and attempt an IV there which I knew would cause a lesion.  Lesions at that time were growing so fast we were watching them and we had no idea how to stop them.  To top it off, someone finally told me this was all happening because what my baby really needed was a PICC line but it was a holiday weekend and the people who do that were not working. Lesson 2 of having a chronically ill kid.  I walked out of the room and down the hall, screamed at the top of my lungs and ripped my shirt off Hulk style.  Lucky for me a tech who has since become a very special friend but at the time I did not know walked up to me and wrapped me in her arms.  Thank you Darci.  I walked calmly back into the room and said No.  No you cannot put an IV in her skull.  She asked me if I was refusing medical care for my daughter.  What a horrible thing to say.  I looked her in the eye and said yes.  They called the necessary people in from their fourth of July bar-b-ques and we got a PICC line and Lil did not die from dehydration that weekend.  This is one of only two negative experiences I have had at AI out of hundreds... literally HUNDREDS of experiences we have had there.  I have learned so much in the past two years about myself, my mom-ness, my daughter, my marriage, my friends, my enemies...

And now we are at the point were we are saying LillyAnna HAD a terrible sickness.  She WAS very sick.  Now she IS chronically ill.  This will be her life.  This will be our lives.  It is time to pick up the pieces.  Even as I write this I am in awe at how everything has fallen into place.  At this moment in time, this week, this month, right down to this very post.  I started this post three weeks ago on the day of the anniversary of Lil's first lesion and so many things have come full circle.  This past week I taught Responsive Classroom.  The last time I did that was the very first time we found the first pustule which caused the first lesion on Lil's thigh.  How many times have I told that story?  "Well, I found a pimple on her thigh, I popped it and went on a business trip..." hundreds.  I have told that story hundreds and hundreds of times. 

So now our family is once again entering a new phase of life.  A new generation.  I am getting back into a form of teaching.  It is not full time teaching in a classroom but I will be working part time during the day with the University of Delaware to grow new and experienced teachers, such exciting work.  I will be leaving LillyAnna with a nanny (hopefully) for small portions of the day.  The twins are starting Kindergarten and they will be there all day which gives me a little more flexibility.  She will still have bad days, and so we will but nothing is going to change that and life has to go on.  We cannot continue to wait for the next horrible thing to happen.  And unfortunately we are not in a position for me to be able to just stay home and take care of her, I have to earn an income. 

The National Institute of Health is moving forward FINALLY!  This is good news but I will not allow myself to get too excited after New York and we do not have to spend any of our own money for this one. 

We will continue to share our story and continue to hope for a cure for our girl.  We will continue to count on your support and continue to be thankful for everything you all do, for the diversity of support you all offer us that keeps us going.  I am just going to try to have a new perspective.  I am scared, very, very scared.  Two years is a long time but if LillyAnna can embrace life through her pain, so can we.

 

Mending

A giant hand inside my chest
Stretches out and takes
My heart within its mighty graps
And squeezes till it breaks.

A gentle hand inside my chest,
With mending tape and glue,
Patches up my heart until
It's almost good as new.

I ought to know by now that
Broken hearts will heal again.
But while I wait for glue and tape,
The pain!
The pain!
The pain!

By Judith Viorst