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. 



The Quiltmaker's Gift

 

 

 

This post is about Human Kindness.  I think about Human Kindness a lot.  I think about how to teach it to kids.  I think about how to teach teachers to teach it to kids.  I think about how to bring it out in my own kids.  I do not believe it is as hard as it seems.  I believe you need to be a model of kindness and then talk about it.  I did this in my classroom as a teacher and I do it with my own children.  I have been doing it long before the kids were born and long before Lil got sick.  Where did I learn how to be kind?  My mother, my grandmother, and my family all taught me kindness through example.  I grew up in Southwest Philadelphia (basically).  Both of my grandmothers lived there (one still does!) and I spent a lot of time with them.  Mostly I spent time with my Mommom Toni (Antoinette) because she babysat me.  Wherever we went she spoke to people.  The old, lonely Italian man on the corner?  Well, she knew his whole life.  I didn't because they only spoke Italian but his eyes lit up every time he saw her.  In the stores, if someone dropped something we picked it up for them.  Just walking across the street we would stop and talk to people waiting in cars stopped at red lights.  When we had extra tomatoes from her postage stamp size garden, we gave them away.  When someone was sick we made them chicken noodle soup.  We talked about kindness.  I remember asking why and she told me.  I never questioned it because I also lived it. 

Our family is so often the recipients of Human Kindness (and yes I am capitalizing it on purpose).  This Human Kindness comes in the small mundane things that just keep us going every day and sometimes it comes in the form of a $5,000.00 check (well that happened once but it was big).  It is overwhelming for me to say thank you.  That probably sounds really stupid to most of you.  When faced with an act of kindness, sometimes I need to just turn away.  I go inside myself.  Each act of kindness, no matter how small it may seem touches me to my core and I do not know how to say thank you. 

Knowing that we are trying to get Taylor Swift to the AI DuPont Radiothon, my stepsister had a friend who gave us tickets to her recent Philly show.  Taking a three year old to concert of 50,000 people is quite an experience.  One question we always get is 'what is Lil's prognosis?', the answer is we do not know.  Will this be the only concert she ever attends?  Probably not but who knows?  These are the kinds of things that roll around in my mind so I soaked up every second of that experience with my baby girl. 

The experience started with Lil's swim coach gathering a bunch of pool moms that I did not really know.  It was wonderful getting to know new people and also, again, being the recipients of kindness.  What they do not know is that Lil had a horrible day that day.  We almost did not go to the concert because Lil had been spiking fevers.  The "pool group" allowed us to infringe on their table, make a poster there, happily offered us drinks and welcomed us with open arms.  This is the Human Kindness.  Without question, they enthusiastically embraced our infringement without question and we made new friends. 

In the concert Lilly worked her magic.  A gorgeous young woman behind us fell in love with Lil and Lil fell in love with her.  I kept telling this lovely young lady that she did not have to keep interacting with Lil (I mean she did pay for those tickets) but she just kept saying over and over... "But I love her."  Yup, that is Lil's superpower. 

Lil was completely enthralled by the whole experience.  When she saw Aunt Tina next she kept telling her: I went to a concert.  I think that was just about all she could process.  To see the wonder in Lil's eyes and to think I do not know what her future holds but that she has this... how do I say thank you for something like that?  Do you see what I mean? 

I had to stop teaching about three years ago.  I loved my job.  I taught high poverty students in a high needs school for thirteen years.  I loved my school, I love my colleagues, I loved my kids.  Lil got sick in June.  I decided to leave my job in early August.  I never stepped foot back in that building until about 3 weeks ago to train the staff, over half of whom I am still friends.  They treated me with the utmost respect.  I left with a trunkful of food for my family; like I never left.  How do you say thank you for that?  For a group of people who still treat you like family three years later? 

This week a stunning woman read our blog and decided she wanted to do something to help.  I do not know her, in fact we have never met her.  She is a bartender at an intimate, neat and cozy little bar in Pennsylvania.  An intimate, neat and cozy bar filled with some of the most caring, generous people I have ever met.  Not only did they give us money when it did not seem like they had a lot to give but they each wanted to hear Lil's story and they wanted to know how she is doing.  Just phenomenal.  How do you thank someone for caring about your sick child?  A child they never saw until that night.  Truly caring, not just asking about her story, making eye contact the whole time and holding my hand at the hard parts...

 

 

There is also my work, this may seem like an odd connection but this past two weeks I worked my tail off.  It took me away from my family and that is really hard for any mom.  For me it is even harder because I watched pustules pop up all over Lil last night, one is totally open and I do not know why.  I have no point of reference.  I should have taken her for blood work last week with her symptoms but I was working.  I have to work.  I have to make money.  Fundraisers are so helpful but Chris and I need our income.  The fundraisers help when she is so bad I cannot work.  Or when she is bad and I am working, the extra money makes life a little easier.  Fundraiser money helps buy Lil's special band-aids, advil, and a plethora of other things insurance does not pay for.  Everyone keeps telling me to do stuff for me.  How?  When? 

Anyway, two of the teachers I trained in the past two weeks were reflecting on our work together at the end of the week.  Their reflection was that they were going to leave education but our week of work made them change their minds.  Just think about that, I had a hand in keeping these amazing educators in their fields.  They do not know it but their act of kindness, sharing this with me, makes it worth it for me to do my work.  My work is powerful.  There is no other work I would allow to take me away from my family at this point.  Along those lines, this past week, I met some amazing women who reminded me how important that strand of female empowerment is.  They lifted me up last week and I still feel their strength.  They took care of me. Their Human Kindness was truly evident. 

For every donation we receive from the $5,000 donation to the $25.00 donation I am moved.  A very good friend of mine bought me a massage knowing full well I would never buy myself one!  A vile of essential oils researched to help arthritis.  I am overwhelmed.  Chris and I look at these donations and we are very careful with that money.  The other thing we do is give back.  We cannot give back with money.  Also, I cannot tell you all the little ways I give back because I would giving away all my secrets:)  But it is on my mind every day, every minute.  When I am trying to control all three kids and I have no free hands, I still lean over and pick up something someone dropped, I still give away the extra tomatoes I grew, I make extra meals as often as I can (and when they are cheap), I feed people when I can.  My Mommom walks beside me in my Human Kindness.  It is not hard for me, it is not something I have to try to do.  She leans over with me, she holds my hand.   I feel her warmth.  I thank God for her teaching and example and I thank God for her memory. 

Waiting for Normal

 

Dr. R told us we just had to wait and boy he was not kidding.  Lil's pain is just hanging on and not letting go.  What frustrates me the most is watching her act so normal for a majority of the day, or listening to her sitter tell me she had a great day, and then watching her fall completely apart when her and I are alone.  Just last week was a great example of that.  She told me she had pain in the morning (pain in her mouth and in her side and belly), she had not been eating so I know it must have been significant.  All day she hung in there with the twins playing and running around but when it came to bedtime she just lost it.  I finally had to force oxycodone down her throat and it was not until then that she gave in and fell asleep. 

The medicine issue is big right now.  Her iron is low but she refuses to take any supplement.  We really need to get more blood work to see what direction this is all going in but I am so reluctant to do it.  I see glimmers of her getting better and doubt myself.  Also, I literally have not seen her in about two weeks.  How can I judge where she is when I am not with her?  I spoke to a very knowledgeable friend about this very thing.  Why is she "ok" when she is with other people or out and about but then she sees me or we are home and all hell breaks loose?  Why do I see such a different child than everyone else does? 


This friend just became a Nurse Practitioner (Congratulations Amanda!) and knows her stuff.  We talked about quality of life.  I could see her point.  If Lil feels good enough to be able to play and run all day she has a good quality of life even if she is losing it when she gets home.  I do reserve my mommy 'know how' though (and I know Amanda respects that) to say that she does not see how bad it can be when Lil loses it at home.  If a three year old feels they have to hold in their pain all day to that extent is that any quality of life?  To see her cry and thrash and scream, to see her skin and body react to the pain by breaking out in pustules and fever, to know I have to give her an opiate in order to calm her down....  Would any adult live like that or would they go to their doctor and say fix this! Something is not right!  I am her advocate.  This is my job.  And to make it worse, I have been working so much the past two weeks I have no read on her.  None.  I love the work.  We NEED the money.  Having no pulse on her feels like being trapped in the middle of a pitch black room, arms stretched out feeling for the walls, a chair, anything. No idea what is happening or where anything is; ears straining for sound, skin beginning to break out in sweat, fear sweeping my body in waves. 

Thank God I have a wonderful husband who is an amazing father.  We have our rough times, living this life is just so hard.  Everyone tells us to take time for 'us'.  There is just simply not time for it and we do not have the money.  The house needs improvements, the laundry keeps piling up around us.  You all know how it is.  We have this beautiful, hurting little baby in the midst of it all.  I was talking to my uncle who is now the grandfather of a beautiful baby girl with Down Syndrome.  We were talking about this very thing and he just looked at me as Lil was putting her tired head on my shoulder and said, "How can she not come first?"  He gets it. 

Chris and I find moments for ourselves.  I will say I am the reining queen of falling off the high dive at the pool.  We eat dinner alone almost every night (try not to judge).  And Chris makes one hell of a banana split which we enjoy together each night (again, try not to judge :).  But on top of all the rest of life's normal curves, we have to protect Lil from unforeseen dangers; from the unknown.  Everyday we have to guess what is going to be a threat.  Is the threat the pain in her side that is making her grunt and double over or is it the mosquitoes because too many of those can put us in the hospital.  Is it the guy next to us coughing or is it her mouth and that she has not eaten lunch or breakfast that day?  The list just goes on and on. 

There is my girl though, running around having fun!  Taking all kinds of risks she should not be taking: getting too close to the grill, running in her flip flops, running with a smore stick, etc, etc. 

She told me getting in the pool makes her owies feel better.  Our pool and local swim team allowed her to join the swim team.  She tells everyone, "I am a GATOR!"  The other day she woke up and had pain in her legs.  I asked if she wanted medicine.  She told me she did not need it because she was going to the pool and that would make her feel better.  Since she cannot go to school, being a part of a community like a swim team is even more important for her. 


So how is Lil?  As I write this I can hear her grunting in pain from the living room.  She told me she cannot eat a hard boiled egg because her mouth hurts but she is also smiling and talking to me like she is the happiest child to ever walk the face of this earth.  This is the dichotomy with which we live... waiting for normal. 

Lil with one of her best friends and swim team mates, Spencer!



Taylor Swift 1

We are trying to get Taylor Swift to support the AI DuPont for Children Hospital's annual Radiothon. Please watch and share this video of our beautiful LillyAnna!

http://www.youtube.com/watch?v=uQIek4HQpek

 

 

Amelia Bedelia

I feel like Amelia Bedelia.  When Lil is sick I just barely 'win people over'; manage my house, keep my marriage intact, maintain my friendships, pay my bills!  I just do not understand it.  I watch so many families around me manage children whose complex medical needs are far more demanding than Lil's.  I watch them live their lives with balance.  Yet I feel like Amelia Bedelia. 


Our lives will be plugging along, a lot like the Little Engine That Could.  We check Lil, take her for her extra appointments, make sure she does not get a lot of mosquito bites in the summer or get too cold in the winter.  We wipe her hands with real alcohol wipes all the time and avoid public places when there is a disease prevalent (which is just about always) or flu is in high season.  The list goes on and on.  Those are daily things.  Oh... and we take care of her 'boo boos'.  Her daily boo boos are the days she wakes up and her joints hurt from the arthritis which usually happens about 2-3 times a week. 

Then something like this happens.  About every other month we get thrown a curve ball.  Whether it is high fevers, lesions that are opening up, vomiting, a combination or some strange something; her disease will give us a little gift.  I wish I could get used to it but instead I get all twisted.  And it frustrates the hell out of me.  That is what you saw last night in my post.

 

Not only am I frustrated by Lil's disease but I am frustrated by all it takes away from us as a family and all it takes away from her.  I do not in any way mean to minimize the experience of my dear friends who live those lives I described above because I have done some, some, suffering with them as I watched our dear sweet Lucy die at five years old and I lived that with her brothers and sisters and mom and dad.  I also experience those lives through our support group.  But our experience is so different.  Not in any way worse, or better.  Just different. 

 

We get to live a pretty normal life for a couple of weeks. Just as I am starting to relax, just as we are all starting to relax it happens.  I think about putting the vomit bins in the closet, I think about it. And then, like a punch in the gut, it all starts again.  Every time it comes on differently and every time, even though I am waiting for it, even though I am ever vigilant, it surprises me because a very small space inside of my soul that I do not allow to grow very big at all, but has its own light source, gathered a bit of hope, hope that this nightmare was over gets extinguished.  At that point we are all plunged into darkness and fear.  I am in my heavy dive suit sinking to the bottom of the ocean waiting to see where I will hit bottom. 

 

This time I am scared.  We have never seen this.  The more calm Dr. R is in an appointment, the more nervous I am.  It usually means he is trying to keep me calm.  I know your tricks Dr. R and I love you for them.  Labs look ok as far as I can tell.  I am going to take a class in how to read blood work.  I know the basics but I want to know more.  I am so tired of having to rely on other people to tell me how my baby is doing and interpret that for me.  So when I get the money together (LOL) that is happening!  That is part of my 15 year plan to go back to med school. You think I am kidding? 

 

So here I am talking about how I cannot keep my life straight and then how I am going to go back to med school.... Amelia Bedelia.  I know Amelia Bedelia was really all about taking things too literally but in a way that is what I do.  I want this to be black and white.  I want answers.  I want to know what is happening.  It reminds of the time I told Dr. R how Lil's temp was going up and down all day and I gave him a list of temps, there were about 15 temps on the list.  I also said she was really miserable.  He calmly asked if they were rectal or temporal.  This was about a year and a half ago.  I told him they were rectal.  He then, again calmly, told me he would be pretty miserable as well if I were sticking something up his butt 15 times a day.  I had to laugh. 

 

So when Lil does not feel good my brain gets high jacked.  It just simply does not work very well.  I have come to think of it as a survival technique.  Like all of the blood rushes to the part of my brain that protects and thinks about survival.  Right now I hear her sitting in the living room grunting in pain and I totally lost my train of thought.  My work suffers, my relationships suffer, my family suffers.  Everyone tells me not to worry about this, that this is what I have to do.  That was ok for year one, maybe year two but this is year three.  We are coming up on our third anniversary of Lil's very first pustule.  Happy Anniversary.  As an anniversary gift she has three papules on her vagina. 

 

 

Zombie In Love

What does it feel like to love someone who constantly evades your understanding?  The perfect little person who needs you, wants you to comfort them; put on their favorite little blanket in the way only you know how.  But then will turn on you in a heartbeat.  Lil's disease turned on us.  I told you it could throw us a surprise and it sure did.  I told you Thursday that Lil was developing fevers and pustules.  At that point they were big, angry pustules.  The next day we woke up to her right arm covered in small papules.  Friday her left arm was covered.  Saturday it was her legs and by Sunday so was her trunk and back.  The top of her right arm was also swollen.  She does not say they are itchy, they do hurt, her mouth has lesions as well and I would be lying if I said I am not terrified.  We have never seen this, this is brand new. They are so hard to see in these pictures.  One of the reasons we went to see Dr. R today.  This was one we needed a check in on... He looked right in my eyes and told me I was not going to like what he had to say.  He was right.  He said we just have to wait and see.  I hate that response.  I have to sit here and watch my baby feel like $%#* and not be able to do anything about it because we know nothing about this damn disease and, AND, we have to just wait and see what happens next to her little baby body.  Who knows what that could be?  Anything could happen.... We have no idea what is happening in there and no way to find out.  She is grunting in pain.  She is tired.  She is telling me it hurts.  Can I help?  No.  I have to wait and see.  Great.