Guess What? Theres A Hippopotamus On The Hospital Roof Eating Cake

The news that we are going to the National Institute of Health (NIH) causes me such a mixed bag of emotions.  We just got word that the National Institute of Health in Bethesda, Maryland wants to see us again. This is wonderful news. Although they are not doing research on Lil's exact disease (Idiopathic Infantile Pyoderma Gangrenomsum) they are doing research on Pyoderma Gangrenosum which is slightly more common in adults. They have agreed to take us as patients because Lil's case is so unusual even in the 17 infant cases (lucky us!). The big news this year is that Lil developed... Pyoderma lesions in her mouth. Only 6 patients have had those in the adult pool (no infant patients have ever had it... until now) This is BIG news and also a little costly/ emotional for our family. We go the week of September 20th. There is no negotiating the date, when they say jump you ask how high. It is the first month of school for the twins.  I will be in a new position at work (I think).  But mostly it is a feeling of having hope and that hope having no fulfillment. 

Even at the NIH, one of only three places in the world where there are doing research on this disease (and not even Lil's actual disease) she is an outlier, she is extraordinary.  They are so blown away by her they cannot help but tell me how amazing her disease is, how remarkable she is.  It is terrifying.  What are they going to have to say now that the PG is in her mouth?  What if she does not have active lesions at the time and they do not believe me?  I could not get good pictures of them.  Possibly even worse, what if they do believe me and then, like this year they basically ignore me throughout the year when things get really hard again?  It is just terrifying.  I am so alone in her care.
 

 

But I am getting away from how great it is that we are going down there! This is our only 'in' on research.  They have so much knowledge and they also make me feel wonderful about myself which sounds silly but knowing how I am Lil's primary caregiver, having someone say 'yes, this is really extraordinary and you are doing the right things' means more than anyone can imagine.

 

Each Little Bird That Sings

Have I told you yet about how much LillyAnna likes to sing?  I will often wonder where she is in the house when I am working until I hear her adorable little voice.  Following it like Hansel and Gretel's breadcrumbs, I find her laying in her bed singing loudly in what 'yogis' call the happy baby pose.

This past week she absolutely sang.   LillyAnna loves people.  She is the kind of kid who makes friends wherever she goes but I have to admit they are mostly adult friends.  In an effort not to leave anyone out, I hate to name specific people because it will inevitably be someone important but I am going to take a chance.  LillyAnna loves the phlebotomists at AI.  She calls them her "girls".  She loves her Aunt Tina, Aunt AnnaLouise, Nonni, Granny, Aunt Coco, Aunt Renee, Aunt Lulu, Amanda, Mommom and Poppop.  The list could go on and when we go places she just makes more friends. 

Our trip to the beach was no different.  My family is full of love but watching Lil be the center of that family, watching her pull people together and gather love around her was fascinating.  Love and happiness follow her like the wake of a boat.  I am in awe of her ability to inherently grow happiness and wonder in just about every situation.  It surrounds her and brings those around her closer together.  It makes those around her happier too and they just simply want to be around her more.  How is it possible when she is in so much pain all of the time? 

This is why it is so frustrating to me when people do not believe she is in pain or say she looks fine.  I know what is underneath all of that.  LillyAnna and I are so connected.  I know someone who had to make a very difficult decision once when it came to a chronically ill child and end of life.  My only advice was to make sure that she was ready to take it on because at the end of the day, every day, it was only going to be her and that baby.  It is true.  My family would do anything for us, my husband is amazing.  But in the end it is Lil and I, every day.  We are connected in every way.  She may want Daddy to put her to bed every night but when she is in her worst pain she only wants Mommy.  It is so hard when people question that connection.  And when people honor it, I just hug them... and sometimes cry in relief. 

It is in this way LillyAnna sung on vacation.  She wrapped our whole family in that love and happiness.  As you all know, my mother died right before the twins were born.  My dad is now engaged to Sherry, the kids' grandmother in every way.  They have three wonderful aunts and great grand parents.  Lilly wrapped us all up, pulled us all in and it was wonderful.   She also brings Chris and I closer together.  Love is a funny thing.  Marriage is even funnier.  After eleven years I have learned that although sex is great, marriage is certainly not about that, especially when you have a very sick baby and a sick Mommy as well.  Love is about sticking together.  Finding things that make you joyful.  Not giving up.  And doing it all no matter what happens.  It is what family is all about too but with family you have no choice, not really. 

Every week LillyAnna gets shots.  One of them is a chemo drug.  It makes her pretty sick.  The night she got it on vacation she woke up on her back vomiting like a fountain.  At three am I had to put her in the shower and wash her shivering little body while she cried hysterically.  My dad (who broke one ankle and sprained the other a couple weeks before a BEACH vacation!) scooted out on his knee scooter to rub her tired, sad little head until she fell asleep while an oppressive feeling settled over the house.  It is just not right. 

 

 

 

 

How else did she sing?  She went on the Ferris Wheel and cuddled up to her Aunt Coco.  She rode the motorcycle ride with the purest look of joy. It was literally painful to take her off.  She dug in the sand and jumped over waves.  She napped on the beach.  And every once in awhile I would catch her looking off into the ocean, just staring.  What is an almost 4 year old thinking about at moments like that I wonder?  My almost 4 year old needed a stroller.  My almost 4 year old needed some hard core pain meds.  But my oldest four year old sang.  She sang in so many ways.  I am just lucky, we all are, to know her and to have her as a checking point.  When you have a cold or your knee hurts or you have a bad day at work think about that almost 4 year old and how she sings. 

I got to spend some quality time with her this week and hit my own reset button.  I was able to cuddle with my babies and sleep next to their snoring little bodies.  I actually had coffee with my dad and ate meals that I cooked with another woman which always relieves some of the pressure.  I am always in awe of the power of groups of women. 

When you feel weak this week, hear Lilly sing.  Usually it is a Taylor Swift song but sometimes it is nonsense she makes up.  Whatever it is, it is happy.  Let her song surround you and then let it fill you up.  She cannot say it but I know it is what she would want.  When she sees people smile, she hugs me and smiles the biggest smile.  It is like she knows, like she knows she throws out a force field of strength and goodness and it fills her up. 

 

Beach Feet

LillyAnna loves the water as you well know.  She loves nature.  She loves birds, new things, new people...

I love my dad.  I lost my mom emotionally early in my life due to a drug addiction but physically three weeks before the twins were born to that same drug addiction.  I loved her.  My dad is my rock.  He is one of my best friends.  He is turning 60 years old the first day of our vacation. 

Yes, we are planning a vacation.  We made it as low budget as possible and even that may not have been enough.  Lil was up all night last night coughing and I am worried she is not going to make it. 

She has had beach experiences but remember, she missed a whole summer; lost to the hospital.  Those beach experiences have been taken away from her for reasons I would rather not talk about but now we have a chance to go.  I pray.

My little girl has not had a very good summer.  She has had a lot of pain, vomiting, blood work, headaches, A LOT of pain.  My family has not had a very good summer.  We are trying.  I try so hard to smile every day.  I try to be patient with my children and enjoy every moment with them.  I love them so much.  I love their six year old bodies and their six year old minds.   They have made amazing friends.  We are so lucky as a family.  Our support group has lost one of our own this summer.  Seven year old Tyler gained his angel wings.  I did not know him well but like most of our kids, he was always so happy.  Lucy was the same way. 

Like Lil, our kids do not show their pain, they always have a smile on their face.  Dr. R says about them, that they always say they are fine even when it is obvious they are not. 

Throughout Lil's illness people have told me they are so impressed by how I am able to stay so positive.  Lately I have not done so well at staying positive.  I have just been so tired and Chris has been so tired.  This has gone on so long.  But I know this is part of our journey.  I know we will overcome this exhaustion and we will get used to it.  Lil has felt pretty awful for a long time and that affects the whole family. 

 

I am hoping this vacation pulls us out of the doldrums.  I am counting on it revitalizing my positivity and our family and bringing us back to home.  The beach can do that.  When I was a kid, my grandmother and I spent a lot of time down the shore.  We would people watch and eat.  We would take long walks and sit by the water. 

It is time to start making some good memories.  We have had a good times this summer but it seems as if a dark cloud has attached itself to us and does not want to let go.  Was this stupid and irresponsible to plan a vacation in our situation?  I feel so guilty.  We do not have the money for it.  We do not have the resources for it.  But I look at that little girl and I look at her brothers and sisters and I think to myself: they deserve something. Believe me, this vacation is nothing fancy.  Parts of me are just wracked with guilt and shame.  Every parent questions their decisions.  Mine carry so much weight.  They are so heavy.  They weigh as much as that dive suit making each step crucial, each step takes every ounce of strength, each decision feels like the last.  I know that is not true.  I know so many parents have it worse than I do.  Our lives are just so unsure.  We are so in the dark.  I put on my dive suit and it is my solace, my home, my hell.  It is her safety.  In it, I am all hers. 

She felt so good today.  No pain meds to get her through the day.  But getting ready for vacation is a practice in putting on the dive suit out of water.  I have to have everything ready.  Her unique bandages, special instructions for IV, two different kinds of thermometers, ALL of her meds (just in case), vomit bins, extra sheets, the list simply goes on and on.  I have to prepare for every eventuality.  We will be away from our hospital, our people. 

Without a penny to our names, some bills unpaid and peanut butter sandwiches packed in a cooler we are off to make some memories!  In my humble opinion that is sometimes how you make the best memories.  It is what I am counting on; family, love and good times creating memories that are going to clear the dark clouds and lift us out of the hole we have just started to slide into.  Bring on vacation!

 

Guess How Much I Love You

*disclaimer* this has not been proofread

Oh Baby Girl.... tell me what is wrong.  You play and you romp.  You swim and you laugh.  It is beautiful.  It is as beautiful as watching the sunrise over the Mediterranean Ocean, rare and awesome.  And then you start to show signs of slowing down like a robot slowly rusting out; one limb at a time you break down, an arm sticks out and stops, a foot juts out and freezes in place.  Finally you have a fever sky high. 

Or, like last night, you wake up screaming and writhing in pain.   You cannot or will not tell us what hurts.  I am so sorry baby.  I am so sorry baby that I cannot make you feel better.  I am your mother, I should be able to take away your pain.  I should be able to comfort you.  But instead you push me away.  Did you have a nightmare about how I used to have to hold you down for dressing changes?  Or have you learned already, at three, that Mommy cannot fix you little baby boo boos?  Finally you did cuddle up into me.  You gave in.  You tucked your sweet arms into my belly and nuzzled your face into my neck.  I could smell your hair and feel your slightly sweaty body clinging to mine.  We rocked in the chair I rocked your brother and sister in when they were babies, I rocked you in when you were a baby.  But you are not a baby anymore.  You are almost four and you were in so much pain. 

We tried to leave the swim meet before this new crash and burn cycle kicked in but to no avail.  Each night you get a fever between 102.5 and 104.0.  You threw up three times in the parking lot.  What is wrong baby?  What is wrong?  Is this still the same flare?  Are you just sick?  Ear infection maybe?

As your mom I feel so alone.  People keep telling me to do stuff for myself.  Or not to worry so much.  You and I know, Lil, we know.  Because it is me and you together in this and of course Daddy too.  But there is so much pain.  And you are just a little girl.  And I am your mom.  I am supposed to fix this for you.  I am scared Lil.  You do not tell me when it hurts.  We have to work together. 

You are still you.  You are the light in the darkness.  You are a Graylyn Gator.  Knowing you will most likely not be able to go to school, I work hard to find places for you to be safely part of communities of kids.  This pool is the perfect place.  I cannot say enough about how amazing thiese people are to us Lil, how wonderful they are to you.  But you have found some friends.  That is important to you.  You always tell me you do not have friends when the twins go to school and it about shatters me.  One of those friends is Nicky. 

You love him.  You two seem to get each other the way youngest siblings get each other, the way three year olds get each other, the way kids who like to swim get each other.  He shares with you.  You share with him.  Last night, before your crash, you and Nicky giggled together for literally an hour.  His mom and I kept making eyes at each other.  I don't know what she was thinking.  I know we were haring a moment of joy with our babies.  I also know I was thinking my baby girl has her first real friend. You have been asking for months.   All winter and Chris and Nettie grew in their social skills and friendships, as they should, you noticed that you were not doing the same.  You noticed you were not going to school.  You play with your toy school relentlessly.  "I want a friend Mommy."  "I do not have a friend Mommy."

 

 

I just want you to know I love you.  I love you so much.  And I would do anything to take away your pain.  I have said I would not take away your illness because this is your journey.  It is.  But this pain and it going on this long it too much.  Last summer was so free.  You just played.  I just cannot believe I can do nothing for you.  I am helpless and frustrated.  I love you.  I love you.  I love you.