To Make You Feel My Love

 At work on Friday night I was talking to two customers and found out that we both have experience being the parents of chronically ill children. The gentleman started telling me a story about a doctor who would visit a very poor village in the heart of Africa. I will not in anyway do this story justice but I am going to try... I cannot be held accountable for details gone awry! There was a family this doctor saw on his visits who had a young boy that was just not growing. Every time the doctor went to the village, the child was more and more weak. Finally, on one visit, the doctor told the family that he believed he had found the source of the child's illness and unfortunately the child would die. The family was distraught and asked if anything could be done. The doctor told them that the only way to save the boy was to go to the nearest hospital and have surgery. The nearest hospital was hundreds of miles away and the family had no car. After a few days the mother created a sling, put her son on her back, used her family's life savings and walked for three weeks to get to the  hospital. Along the way she was robbed, had no where to sleep, nothing to eat. When she got there the hospital told her she had to have an appointment and that the next available one was in three months but when they found out what she did to get there, they did what needed to do, completed the surgery and the boy lived. 

This story has been haunting me.  The strength of a mother's love is just astounding.  I am reading a book about a mother who finds out her one year old has Ty Sachs disease.  This is a disease for which there is no cure, your baby is going to die and it is not going to be pretty.  There is nothing you can do about it.  She calls mothers who have to watch their children die Dragon Mothers.  She says the strength they need to smile through their child's pain and comfort others when their soul is shattering is something only a dragon can do, a mythical creature known for its sheer power.  I know some of these Dragon Mothers and I can tell you it is accurate. 

Lately LillyAnna has been having a lot of pain in her feet and legs.  It is, as always, so difficult with her because I do not know if this is new pain or she is just better able to describe it as her baby ramblings form themselves into real sentences and discernible words.  The swelling we have been seeing in her hands and feet is also confusing because her body is changing so much.  My baby is losing her baby chub which is normal.  But hers is falling off at an alarming (at least alarming to me) rate as it is exacerbated by her lack of eating and constant vomiting.  Yes, she still vomits multiple times a day.   So when her hands look swollen it is hard to remember if they looks chubbier than the day before or not.  However, some things have gotten more clear over the last week.  I had to buy her crocks because her shoes will fit in the morning and then not fit later in the day, that is more substantial evidence.  Yesterday was just awful.  Everywhere I touched her she told me it hurt and she cried most of the day saying owie.

I had a wonderful moment with the Rheumatologist when I saw her two weeks ago.  She showed me how to tell if Lil is swollen in her knees and ankles with her practiced eye.  It is hard to tell because of the extensive scarring on her legs.  She also showed me how LillyAnna manages her own pain by compensating with the way she walks and moves her body.  She was astounded by how happy and active Lil was.  Then she prescribed me pain medicine.  I just started to cry.  Finally someone saw what I was seeing.  So often, I feel like I have to prove to people that this baby is in pain.  She is just SO happy almost all of the time.  But that is LillyAnna.  She has a little baby dragon heart. 







The Great And Powerful Dr. R (oh if only he could see that!!! Hahaha!) changed one of her stomach medications.  Whenever we do that we see a small increase in her eating, unfortunately, it does not generally last very long.  For now though it is nice to see her actually swallow bites of food even if it is only one or two.  Although it is done nothing to slow down the vomiting.  In fact, the other night, after she threw up she said "eww Mom, chicken."  I am a little worried that will be the end of roasted chicken!  Dr. R also wants LillyAnna to have another scope since it has been a year and a CAT scan of her head.

Without Chris, I would not have the strength to do what I do every day.  He literally keeps me going, he is my comfort at the end of every long and exhausting day.  He is the one I know will always be at my side.  Nine years ago today when I promised him the rest of my life I had no way of knowing what this life would look like.  It is beautiful and horrible and he is there at every turn to hold me and to pick me up. The ways in which he supports me are not obvious but they are strong and they are real. 


I do not mean to take away from those Dragon Mothers but we have all had our Dragon Mother moments.  I do not need to list them.  Sometimes I feel my strength falter and I feel oh so weak. I repeat my mantras "one foot in front of the other, Gina, just put one foot in front of the other" and Dory "just keep swimming" and, although I do not want to admit it Katy Perry's "Roar".  I refuse to let this destroy me.  I have to be strong, I have to find the good in it because LillyAnna, Chris and Nettie and even my husband need me to.  I am a fighter. A champion.  I will not bow down and let this thing that has happened take me down.  I will be the phoenix who rises from the ashes and I will bring my family with me.  We WILL make Lil's illness work for us.  We WILL rise above the pain and the confusion.  I WILL NOT let us fall. 

"Make You Feel My Love"

When the rain is blowin' in your face
And the whole world is on your case
I could offer you a warm embrace
To make you feel my love.

When the evening shadows and the stars appear
And there is no one there to dry your tears
I could hold you for a million years
To make you feel my love.

I know you haven't made your mind up yet
But I would never do you wrong
I've known it from the moment that we met
No doubt in my mind where you belong.

I'd go hungry, I'd go black and blue
I'd go crawlin' down the avenue
No, there's nothin' that I wouldn't do
To make you feel my love.
The storms are raging on the rollin' sea
And on the highway of regrets
The winds of change are blowing wild and free
You ain't seen nothin' like me yet.

I could make you happy, make your dreams come true
There's nothing that I would not do
Go to the ends of the Earth for you
To make you feel my love.

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:)