Home Again

It is 5am and I cannot sleep, but I am home! They told me this is a side effect of the hospital stay but I have to admit insomnia is something I have been lucky enough to have avoided my whole life so it is throwing me through a loop.  I also have to say that although the nurses at the hospital were some of the best I have ever dealt with (baring those at AI of course:) the hospital stay itself was awful.  I am not good at being helpless.  The first thing they did was insert a PICC line which pretty much rendered my right arm helpless and then hooked me up to an exorbitant number of IV drips which made any movement pretty much impossible.  Does it sound like I am complaining?  Let's just say I have a new appreciation for anyone who has spent any amount of time in the hospital and my respect for them and my own daughter has increased ten fold.  I think I had a healthy respect for that in the first place.   
It would all have been worth it but I came home to a headache that rocked the house.  This is also something they said is normal, "it happens all the time" were the nurse's exact words when I called the hospital. 
I am not giving up though.  Not yet.  If I will not give up on Lil I cannot give up on myself.  So I will continue to follow doctor's orders, try to sleep and hope the headaches stay away so I can enjoy my favorite time of year.  The good news?  Lil did great while I was away... no vomiting!  Thank you God!  The twins missed me a lot.  I am so happy to be home.  Those words are not even enough to express my gratitude for being home.  Thank you all for sticking with us...

Wemberly Worried

I thought Lil had a normal stomach bug.  Why I would think she had anything normal is beyond me.  She had been vomiting in the mornings and at night (which is not her pattern of just nighttime)  and having diarrhea which is very unusual.  This lasted about 24 hours and I thought we were over it.  For once I thought it was a normal stomach virus.  Then last night she woke up with severe pain in her stomach (side), it was so bad I gave her a dose of oxycodone.  There was vomiting and that same diarrhea.  This went on for about an hour before the medicine kicked in and she finally fell asleep.  I know she was in a lot of pain if she took medicine!  She seems fine this morning.  That is my biggest concern.  If it was a stomach bug she would be down and out, not completely fine and eating well for hours or even days and then the symtoms starting up again.  I am afraid this is a reaction to the increased Humira.  Dr. B told us any side effects would not be felt until about 3 months into the increase.  That is about where we are. 

My biggest concern is that I am going into the hospital today and I am supposed to be 'resting'.  Right.  Chris is going to have to deal with all of this by himself and work full time.  I am so worried about this baby.  I know Chris and Julie can handle it but when it comes to disease stuff I need to be involved.  Maybe it is just a stomach bug that is coming and going but what if it is not?  The pattern is just strange.  It is so hard to tell....

I am all ready for my trip to the hospital.  I have my bags packed, I am hydrating myself for my own IV.  I have written notes to the kids for each day I am in, what else can I do?  I told a friend I am going to try REALLY hard to rest so I can get out of there in 4 days.  We had a good laugh about that. She said, "I think that defeats the purpose."  I have a stack of books and they give you free WIFI but it costs 5$ a day for TV.  That is just ridiculous.  And I have my Christmas cards:)  I refuse to lose my Christmas spirit.  I thank God for my wonderful husband, amazing nanny and family and friends who have reached out to support me.  Thank you. 

 

The New Small Person

 

 

LillyAnna has been growing in leaps and bounds.  She looks more and more like a little girl and less like a baby every day.  However, with this recent illness that she cannot seem to kick she is losing weight. I just do not understand why she stops eating like this when she does not feel good.  Lil has congestion in her nose that I do not think has gone into her chest but it is making her cough so hard she is throwing up.  Then again she throws up so often it is hard to tell exactly why she is throwing up.  Whenever she runs she coughs but that has been happening for years as well.  I will be contacting the infamous Dr. R to see what he would like to do.  She is not running any fevers which is why I have not done anything so far but I want to figure this out before I go into the hospital.

Lil's first cannoli.

 

We went to our support group meeting the other night and there was a mom there who was, what I call, 'deep down in it'.  Listening to her share about the ups and downs she is experiencing and how hard it is was hard for me.  She shared that every time she thinks everything is ok something else happens.  I remember writing about that very thing here.  We are now in a place where everything seems to be going well.  It made me feel like I should be waiting for the other shoe to drop.  Every time I relax something happens.  I do not want to do that, just wait for something bad to happen but I also do not want to be blindsided.  This illness is a perfect example.  It is not normal to have a cold for 2 months, one that is bad enough you cough until you throw up and lose weight.  Her little clothes are starting to fall off of her. 

Redness on her cheeks is the beginning of the ulcerations on her face we are trying to prevent after last year's hospitalization. 

I have to make sure she is ok before I go into the hospital for my headaches.  I want to thank you for all of your support.  So many of you have told me I need to take care of myself but I hate this, I hate that I have to do this and I hate that I have to leave the kids and my husband.  I know I have to do it and my wonderful husband can handle things at the house so I am letting go of it and accepting it. But I hate it. 

 

Halloween!

 

Young and Old

I just spent a hour reading through old blog posts looking for the title of the one where I talk about Lil's dressing changes.  I could not find it.  What I did find was a lot of tears and a history of not only Lil's disease but also my topic for today.  My own headaches. 

I wish I could tell all of you that Lil is feeling better.  Is she better than she was three years ago in the hospital?  The answer is yes.  However, she has been pretty much the same for the past two years.  As a family we just now know what that will look like and how to handle it. 

This past month she has been vomiting every night.  I am worried she is losing weight.  Our reality is that she has enough weight on her right now that I am not even bothering to tell Dr. R because there is nothing to do about it whereas last year I would have been emailing him a couple of times and probably bringing her in for a check up.  Now I know that, although watching her vomit every night is horrible, we would not do anything about it until she loses enough weight or dehydrates herself. 

She is not eating much except sour cream and onion chips.  I don't even want to know what her blood work looks like.  And I am waiting to hear back from audiology about an appointment for her failed hearing test.  She has a terrible cough right now and is covered in pustules.  Most mornings, with this weather, she has been in pain with swollen fingers and bad hips.  I feel so bad for her.

I truly thank God for our amazing nanny, Julie everyday. 

Here is our new issue.  As most of you know, I have been suffering from chronic migraines for about 15 years.  For most of that time I would have about 1-2 a week which now I know is considered normal. 

When we received Lil's diagnosis and were in the hospital for over two months the first time, I was under a lot of stress.  During that time, we were so worried.  Lil was sick, we were doing dressing changes every other day.  They took two hours and they were excruciatingly painful for my 9 month old baby.  She had over 30 lesions and the bandages were sticky.  We had to peel them off and re-stick them.  It took me half an hour to set up and the aftermath... well you can imagine.  She screamed the whole time and sometimes just passed out from the pain in the middle.  My job was to hold her down and try to soothe her during this ordeal.  Right.  On top of that, we were so scared.  We had no idea how to treat this disease and it just kept spreading.  During all of this, Chris and I were raising the twins, coordinating their lives and I was deciding to quit my job. 

On the outside, everyone was telling me how strong I was but apparently there was a lot going on inside.  My brain was not happy.  I have been waiting 6 months for an appointment at Jefferson Headache Center being told they are the best.  The good thing is that I now have a diagnosis: transfer migraines.  The doctor compared it to getting a concussion.  He said that when you are a migraine sufferer who gets migraines once or twice a week and then something happens that puts your brain under severe stress (like some kind of trauma or stress- for me, Lil's illness) you put yourself into almost a concussion state.  What do you do when you have a concussion?  Rest.  I have never rested my brain.  His recommendation is to go into the hospital for a week.  There I will rest but also get IV medication to fix my brain.  Sounds crazy.  I was flabbergasted.  Here is the thing, I do not have a choice.  I have to do it.  I have a migraine 24 hours a day 7 days a week and it has been like this for about three years.  After his exam the doctor said I am one of the worst cases he has ever seen. It looks like I will be going in the first or second week of December.  I am scared to death.  My kids are going to freak out.  Especially little Chris. I have not yet told them. This has to be done.  My Aunt Tina and I keep talking about it because she was kind enough and smart enough to realize that I needed someone to go with me to this appointment.  She tells me I am so lucky to have so many people in my life that can help.  I am just so tired of asking for it. 

Young and Old
             ~Charles Kingsley
When all the world is young lad,
And all the trees are green;
And every goose a swan, lad,
And every lass a queen;
Then hey for boot and horse, lad,
And round the world away;
Young blood must have its course, lad,
And every dog his day.

When all the world is old, lad,
And all the trees are brown;
When all the sport is stale, lad,
And all the wheels run down;
Creep home, and take your place there,
The spent and maimed among:
God grant you find one face there,
You loved when all was young.

Quick Update

So we got some interesting (but not surprising) news today...

At Lil's yearly appointment, at which I did not yet have the guts to do her first vaccine, she failed her hearing test.  Now we will be scheduling an appointment with audiology.  I was not surprised to hear this news, something has not seemed quite right with her hearing.  Chris was not surprised either even though we have never talked about it.  As we were going through the test I swear the kid did not hear one thing that came through on the right side.  She just simply did not hear it. 

Band-Aids

Band-Aids
by Shel Silverstein
I have a Band-Aid on my finger,
One on my knee, and one on my nose,
One on my heel, and two on my shoulder,
Three on my elbow, and nine on my toes.
Two on my wrist, and one on my ankle,
One on my chin, and one on my thigh,
Four on my belly, and five on my bottom,
One on my forehead, and one on my eye.
One on my neck, and in case I might need em
I have a box of thirty-five more.
But oh! I do think it’s sort of a pity
I don’t have a cut or a sore!
Where the Sidewalk Ends, 1974

It has been a little while since I have written.  I promised myself, and said it out loud to the world, that I was going to pick my self up and get myself together.  The way I do that is to go inside, I hide.  For so long after my sister died I woke up every day in a cold sweat with tears running down my face.  I was at the risk of falling down into that deep, dark hole I promised I would never fall into again.  I was also feeling sorry for myself.  I hate that.  Through Lil's illness one feeling I have never entertained is 'why me?'  I honestly just never felt that way.  Don't get me wrong.  I got sad, I got mad. 

After my sister died so suddenly I could not help but start thinking 'why me?'  What had I done to deserve so much loss and sadness and pain in my life?  I lost my grandmother, my best friend, right before my wedding, I lost my mother three weeks before my twins were born, my beautiful baby lives every day with this horrid disease and now my sister died at 36 years old.  Not only had I lost all of these people but I live my life and raise my babies without them in a life with a chronically ill child.  After Renee died I could not help but allow those thoughts to take over and it was pulling me down to a very dark place. 

As I do, I pulled up my bootstraps, tied them tight and am moving on.  My dad and I still talk about my sister, friends are still sending me pictures they find of her on Facebook, one particular friend sends me little bits of love once a week and we got that little bit of good news about LillyAnna.  I also got some good news about my job.  I have been offered a salaried position from University of Delaware.  This means our financial position will be more secure in the future.  Right now things are still pretty tough financially but there is light at the end of the tunnel!  I am planning on taking the donation sight down in the next month if everything works out the way it is supposed to!  My only hope is that I will be able to pay it forward.  So many people have been so generous to us in so many different ways.  I will never be able to repay them but someday I will be able to help other people. 

Unfortunately LillyAnna is not feeling well.  She has been vomiting every night, once or twice, for about the last 3 weeks.  My dad, ever searching for answers, asked if it could be from the increase in Humira (remember we are going from Humira every 14 days to every 10 days).   We just started the increase yesterday actually.  Getting this class of drugs for a child of this age is not always easy.  Plus, this is just her pattern.  She is also doing her coughing thing.  So she is coughing more and more as the day goes on.  The more running around or physical activity she has the more she coughs and yes, the more she vomits.  How do you convince a 4 year old to stop running around and playing because it is going to make her throw up?   The answer is that you don't... believe me, I have tried. 
It is so hard to watch her run around and have fun only to watch her fall into a fit of coughing afterward.  We have already determined it is not due to asthma.  It sounds like a reflux cough to me but we have not yet been able to determine why her reflux acts up with her disease.  We also have no way to control it since NO ONE has been able to get her to take her oral meds.  Even when she was on the reflux meds she threw up though so I do not believe it would make much of a difference anyway.

I am so grateful for Julie, our new nanny.  I feel so comfortable leaving the house with her in charge of Lil, even when Lil feels awful.  I truly feel like Julie is a gift from God.  She has changed my life.  I had family watching Lil last year and I felt great leaving them with her but it was someone different every day and I also felt awful asking for their time every week.  It was really hard.  Now I have someone who is steady so Lil has someone who is there every day watching her daily patterns.  Julie is also great at getting her out and about when she is able but noticing ahead of time when she needs to rest.  On top of it, my job is only three days a week and I make my own schedule.  Julie is truly a partner in my household and a friend, I could ask for no more. 

Things are definitely coming together or at least they look like they are going to come together soon (see how I am positive again:)!  Either way I feel like I am in a better place.  We are making our way through this life....

 

Stone Soup

 

 

My instincts about where Lil is right now have been proven to be correct.  Our trip to the NIH did that for me... for us. 

It is just so amazing to go there and be where people know this disease well.  The "Angel Doc" as I dubbed her last year is just amazing, her knowledge is phenomenal.  But all of the people we come in contact with are truly wonderful and they know the disease.  Can you tell how meaningful that is for me?  Of course, everything we heard from them we will talk to Dr. R and Dr. B about and get their take on it as well before any final decisions are made but what we heard sounds pretty promising.

The NIH is suggesting that we increase Lil's Humira.  If you all remember correctly, Humira is not even FDA approved for Lil's age group.  Being immunosuppressed for a long period (and the more suppressed you are) comes with risk.  But they believe increasing it will give Lil a better quality of life.  I would like that... It is also something Dr. R and I have discussed.  The docs do not want to stop suppressing her immune system until she is pustule and papule free for one year.  At this point, she still gets pustules and papules daily and has pain 3-4 days a week. 

So what is the good news?  For starters she is in the 70th percentile on her growth chart.  Seeing the growth she has made since last year felt so good especially since she lost so much weight this winter with the development of her mouth lesions. 

It is the mouth lesions and genital lesions that may bring us some conclusions however.  There is a very rare disease called Behcet's disease or Behcet's syndrome that is consistent with this pattern.  Chris and I did some superficial research on it and we still have more to do.  The flip side is that she may not even have Behcet's and the bottom line is that there is no treatment for Behcet's.  We would be following the same treatment plan anyway. 

We also had to do another skin biopsy.  When they took the last sample, it grew fibroblasts but not keratinocytes.  They are not sure if this is a process of her disease or a problem with the sample.  So they took another sample to see.  The lead is that if it is a process of her disease that could tell them something about her disease process.  What that is I have no idea.  This is all high level stuff that only the Angel Doc understands.  Even the other doctors did not understand its significance!  Dermatology agreed with this assessment but they thought it was less important and most likely a problem with the sample. 

What else?  Lil can start living more of a normal life.  We can try giving her some vaccines!  She cannot get any live vaccines because she is on Humira but she can get more than she has now.  So what does that mean?  She can try to go to school.  They recommend we wait until the Spring and sign her up for just a month to see how it goes.  They mentioned that maybe she can go to school when cold and flu season is not in.  This is what many of the kids in our support group do.  Although it is not complete, it is a big deal. 

Her genetic screening is still not done.  This is pretty frustrating as we have been waiting for this for about two and a half years but they said it should be done in the next two weeks.  Her interferons are high as well.  I have no idea what that means but I am going to do some research on that as well, just no time yet.  I do know it is all part of the disease process they are tracking to see if they can figure out how to stop it. 

We need to keep her mouth especially clean this winter.  No mouth kisses, no sharing food and drinks.  They told us this may help reduce the mouth and lip lesions.  I will be sterilizing her stuff and am thankful for dishwashers! 

They probably do not want to see us for two years!  That is unless something crazy comes back from the tests they did or something happens with Lil. 

This is all huge for her and for us as a family.  It feels like we can begin to move on which as I said is how I have been feeling anyway.  Like I said, we have to review all of this with Dr. R and Dr. B and get their opinion.  They have the ultimate say in what we prescribe and how we treat her (and for good reason, they know her best).  But I believe they will agree with most if not all of it. 

Between all of this and finding our wonderful nanny, I feel like I can go back to work.  The problem with my career is that it is too late for me to do that this year.  We have one more year to live like this as long as nothing big happens with Lil.  It scares me to death to be honest because I feel like every time I relax and think we are in a good place, something big does happen.   So I will be on edge but this is all a process.  This winter will tell us so much. 

One Foot Two Foot Red Foot Blue Foot

People always tell me I am a strong person.  You all tell me all the time that I am an inspiration to you.  I never felt like any of that was true.  I always felt like I do what I have to do.  Your mom dies and you are 9 months pregnant, what choice do you have but to keep putting one foot in front of the other?  Your baby gets one of the most rare diseases in the world but again what choice do you have?  You put one foot in front of the other.  In between all of that you have life's normal blows. 

My sister dying has basically taken me to my knees.  I feel like I must be doing something wrong in this life.  I just try so hard to be a good person, to do the right thing, but it always seems like God is punching me in the gut and saying "How about this? Can you take this too?"  The answer right now is no.  No I cannot take any more. 

I want to focus on the positives.  We just found the best nanny for LillyAnna.  She is exactly what we need for Lil.  She takes her out everyday, gets her moving and interested in life, she wants to start a homeschool with her, and on top of all of that my house is cleaner and laundry is done when I come home. 

LillyAnna has been doing well.  She has her bad days, days when she is logy or has pain.  She is still getting pustules but our life is finally starting to fall into a rhythm of taking care of her.  After three years we are figuring out life with Lil. 

Nettie is loving school and has matured so much.  She works hard and is becoming such a little woman. Nettie loves to dress up and is starting to be able to really play with Lil.  They have been playing dolls a lot.  Chris is just the most amazing little boy.  He is so smart and kind.  He is intuitive and amazes us every day.  We just finished reading The Twits (just the two of us) and it was so much fun. 

My husband and I have a strong relationship and I do not know what I would do without him.  He is such a strong support to me and he loves me so much.  His love and care is literally what gets me through some days.

My sadness just takes over some days.... and stress.  I feel like it is time for me to work more and we need the money so badly.  The financial strain of living like this for three years is really taking its toll.  It scares me to work more and be less in touch with Lil but now that I have a steady nanny that I can count on and who is so in tune with Lil and her needs, I feel like it is time to try to work more.  So if anyone knows of any part time, flexible work- I am available!  I am really thinking about going back to work full time next year. It scares me but I do believe it is something that has to be done.  This winter will tell all. 

Just thinking about all of this makes me so anxious and sad.  It makes me feel like I am giving up on Lil having a better life.  It is another level of accepting that this is her life and will be forever.  I feel like I have failed her.  I cannot make her better, no matter how much I am home with her.  This is it.  You would think I would know all of this after three years but accepting that your life is dramatically changed is a slow process.  I also do not know what it would be like to work full time, if I could even do it while still taking good care of her.  However, I know it is time to try.  We are struggling right now to pay our bills let alone do anything more than that.  I cannot let the twins do things they want to do, I cannot even buy them shoes right now.  As I have said before, we cannot live on people's generosity anymore so please do not take this as anything but me putting my feelings out and sharing what our life is like. 

I am scared, I am sad, I am disappointed in myself.  I failed my sister and now I am failing my baby.  Many of you will think that is ridiculous.  You will tell me how ridiculous it is but I am telling you how I feel.  I am also trying to get out of this rut.  I am trying very hard.  I am trying to focus on gratitude.  I am taking each day as it comes, enjoying every minute with my kids and trying to love every minute of my life but I am down right now.  I am down in that place where most times even putting one foot in front of the other seems insurmountable.  I put a smile on my face because it makes me feel better and it is what people want to see. 

Grief comes in waves.  This is a wave.  It is just a big one and one that has knocked me down hard.  But I am getting up, slowly and surely.  I know I will feel better.  I am so lucky in so many ways. Thank you for listening. 

The Birthday Queen

 

 

My Dearest LillyAnna,
            This week we celebrated your Fourth birthday.  This year you have grown in so many ways.  I am amazed every day by you.  Each day you show us a strength and love of life that is beyond anything I could imagine.  You still wake up most days not feeling very well but it never stops you.  You live with pain almost every day but you have continued to meet milestones that three years ago I would never have thought you could meet. 
            This year you had your first sleep over.  Of course it was a family sleepover and not a friend sleepover but you loved the independence just the same.  You take your suitcase out and pack it up all by yourself, you fill it with favorite books and some candy.  I have to remind you that clothes need room too! 
             You also always have to have your green or blue blankie.  You call them your "shovey" blankets because they are trimmed in satin material and when you drink a bottle (yes, you still drink a bottle) you rub your little hands on the soft edges.  I love it because an old friend of mine is the one who made them (Thank you Michele) for the twins when they were born but you have taken them as yours.  They go everywhere you go, or at least one of them.  At night when we lay with you as you go to sleep (yes, we still lay with you to go to sleep) you pull that blanket up to your chest and flatten it out so you can "shove" on it.  You pick whether you want to lay with me or your dad.  For most of this year you had to have daddy at night but just recently you have wanted me.  And after your shots, which you still get weekly, you always want me too. 

             The coaches at Graylyn Crest let you join the swim team this year even though you could not really swim.  This was huge for you because you are not allowed to go to school.  Being a part of the team made you feel like such a big girl.  I will never be able to thank Coach Amber enough for how she included you and made you feel like part of that team.  Now it is the end of the summer and you are swimming.  Of course, your winter swim coach (Danielle) had a lot to do with that too!  You hid your swimming from me for weeks.  I could not believe it.  You would not let any of us see that you could swim but Melissa caught you swimming on your own one day and then it was all over.  You have been all over the pool and I have been right by your side.  You have the biggest look of accomplishment on your face each time you swim further.  The best part of swimming this summer is that it has helped with your pain.  One day I asked if you needed pain medicine (you were obviously hurting) and you told me you did not need it because you were going to go swimming and that makes you feel better.  How are you this aware at 4?  It blows my mind. 

             This year you were a Philadelphia Mummer for the first time.  We all ended up in the show believe it or not.  You were so sick and ended up in the hospital the next day but true to you, you refused to leave the Convention Center and stayed for both shows.  Poppop was so proud and Golden Crown even dedicated that year's show to you.  We were all in awe of your determination to be in the "Big Show".  What we discovered the next day was that your mouth was full of mouth sores that turned out to be Pyoderma lesions.  This is particularly scary, you are only the 6th case as far as we know of PG in the mouth.  These mouth sores have affected you all year but again, you keep on. 
            The other big milestone this year is that you have started riding your big girl bike.  We are not taking the training wheels off yet but you are determined to keep up with your brother and sister.  You speed down the street behind them trying to catch up.  Again, your look of accomplishment is priceless. 

             Your favorite things to eat have not changed much.  You love my meatballs and gravy and can already roll a meatball all by yourself.  You can stuff peppers and crack eggs, you can even separate them!  It is your favorite thing to stand at the kitchen counter and cook with me or stand at the sink and 'wash dishes' while I am cooking.  Chicken and chocolate and pasta are your favorite foods. 
            You are a four year old in every sense of the word.  I watch you wanting to play and engage with Nettie and her friends even though part of you still wants to hang back and be with me.  You are trying to figure out how this whole social structure works and where you fit into it all.  My heart hurts for you that you do not have your own group of friends.  You not being able to go to school is not easy for any of us.  You want to go to school so badly but the doctors are still telling us it is not a possibility.  I am hoping that will change for you but who knows what is going to happen.  For now, you make friends when you can.  You have made two friends at the pool and it is fun to watch you interact with them but it also hurts me to watch sometimes because I want you to have everything. 
          I think we have finally found a nanny who will meet your needs wonderfully.  It is a hard expense on us but you need someone who is going to stretch your thinking and get you moving when you are able.  Each day I come home after you have been with her, you are just so happy.  I have not been emotionally available to you and Chris and Nettie and Daddy lately.  I lost my sister this year.  I know I cannot allow my sadness to affect you but it is so hard.  I am so sad and so anxious.  You do not deserve it and you do not need it.  You have your own battles to fight.  But someday you will understand the love between sisters, its ferocity. 

         Your party was especially fun for you this year.  You were so ridiculously happy to have everyone around.  No one could believe you chose a Star Wars theme.  The funny thing is, you wanted that last year too!  You are definitely your own person girl!  You really loved opening all of your presents.  I am always excited for Christmas but after watching your excitement when opening gifts this year I am even more excited.

           I love you LillyAnna Rose.  I hope I am doing everything I can for you.  I want you to have everything in life you deserve.  Knowing how much pain you are in some days, knowing how badly you fight to live the biggest life you can, I can only hope I am guiding you the way I should be.  There is no road map for you.  We are on our own path.  I just want it to be amazing for you in its own way.  We all love you so much.  Happy Birthday.
                                                                             Love, Mom
             

Sister Heart

I have another memory to add to my list.  Yesterday, in the middle of training a group of amazing teachers, I checked my phone to see a list of missed calls and text messages.  I knew deep down something was wrong, just like 6 years ago when I received a similar call from my dad.  I was driving down the road nine months pregnant.  He told me to pull over.  I can still see the house in my mind where I stopped and heard the news that my mother was dead.

This time, as I waited for Chris to pick up the phone, I wound my way down into the bowels of an old church and found myself in a ripped apart bathroom.  It smelled like an old church and bleach.  The news was that my sister was dead.  This is coming as a total shock. 

My dad and I are completely lost.  I want to thank those of you who have already reached out to me and those of you who I know will and I may not get back to very quickly. 

So much loss...

The Shape of My Heart

The internet dating fad has so many people in an uproar.  I know people who swear by it.  They tell me stories about how they have found the love of their life and if it were not for internet dating they would never have found Joe Shmoe from Longneck because they do not hang out in the same places.  Then there are people who, when the slightest hint of internet dating comes up, fire shoots from their eyes and lava spews from their mouth and you wonder if you should ever even speak to them again at all let alone about dating.  There have even been a number of movies made about the topic. 

All this heat about dating but we will easily look to the same avenue in order to find someone to care for the most precious things we have... our kids.  Don't get me wrong, I am not judging (internet dating or otherwise).  This is just a mere observation.  I have yet to see any movies made about moms who find babysitters on the internet, but I do not watch many movies.  I do know that there is no fire coming out of anyone's eyes when we talk about it.  It is all perfectly acceptable.

I am ok leaving my kids with babysitters.  I think I am one of those moms who is about down the middle with being too crazy overbearing and not concerned enough.  However, I think it would test any mom's reserve to have to hand LillyAnna over to a babysitter she met on the internet.  No matter how good said babysitter is (and our new one is good).

LillyAnna has been feeling good since I started working more.  Luck has been on our side.  Then, yesterday she really lost her stuff and got her cold fever (when her temperature drops for no reason) and last night I found small open wounds on her side (at the old lesion site).  She also told me her belly was hurting very bad.  They are hard to see in these pictures and they are small. 

I am not saying I do not want to work at all.  I love my work.  I mean I really love it.  However, there is a point where I am working too much.  I need to be home with Lil but I also need to make money for this family.  Not only do I need to be home with her, I need to be focused on her care.  It is so damn frustrating.  I even have a job where I can choose how much I work. 

I have been so anxious the past couple of weeks, my closest friends are becoming concerned.  You always know that is a bad sign.  I am losing weight (that should be a good thing shouldn't it?).  If I just did not have a mortgage payment we could pull this off.  I bet every mom feels like that.  This is one of those times where I do not feel that much different than every other working mom I guess.  Except that I have to hand my baby who is in pain, I have to leave the house not knowing what she is going to wake up like, and give her to someone I met on the internet.  Just writing this makes me feel like freaking out. 

So no offense ____  if you read this.... we so appreciate you.  I could never do this without you.  You are doing a wonderful job.  But it is so hard to have to work more.  I want to be home with Lil.  I need to be home with Lil.  Even if by some miracle we did get to pay off our mortgage (win the lottery?!?!) I would still work.  I just would not have to work as much.  And I am lucky enough to have a job that allows that choice, in a career I believe in.  It is the worry, the anxiety of bills and her.  Is this what every mom feels like?  They just want to be home with their kids?  Or am I right to feel like I need to be home with her more?  I do not know but it really does not matter because I do not have a choice. 

Maybe that is what is so frustrating... not having a choice.  Knowing that even if she needs me, I cannot be there because we need the money.  This is our life.  I know we are not alone.  So many other people I know who have chronically ill kids have crazy schedules (PT, OT, doctors appointments galore) and have to work on top of it.  My problem is there are just so many unknowns with Lil.  It is unknown on top of unknown on top of unknown. 

You would think I would be used to this by now.  I am waiting to be used to it.  Her birthday is coming up.  She will be 4 years old.  That is it, she is changing so much every day.  She is so amazing.  How can I get used to anything when she changes every day?  Or when I have seen what I have seen with her?  I know what this disease does and it keeps attacking her.  They are small battles but it is just not giving up so I am always waiting for the war.  We had one this winter.  When is the next one? 

In the meantime, Lil is being Lil.  And I am doing everything I can to soak up my time with my kids and Chris because that is what is making me feel good.  

A Dog Day

 

Have I told you that there is a type of Post Traumatic Stress Disorder for parents of children who have severe chronic illnesses?  There is.  It makes me feel weak and afraid to tell you this.  It makes me feel weak and afraid to know this. 

I have two jobs.  Unfortunately, with Lil's illness, I do not get to work either of them as much as I need to.  One of them is local.  One is not.  For the one that is not, I get to travel a bit.  Tonight I am in Washington, DC.  The people I have met here in the hotel have been some of the kindest people I have ever met in my life and it is a good thing, I need it.

Things with my other job are changing quite a bit.  I am hoping it is for good but things are a bit up in the air and I am not sure how they are going to turn out.  I have a lot of decisions to make and again I am scared.  If I start working more, what happens to Lil?  If we continue the way we have been we simply do not have enough money.  Our lives cannot go on like this.  Your generosity is beautiful but we cannot live on it forever. 

My life has to start to have some purpose.  For the last three years (it has been three years this summer since Lil's diagnosis) I have lived my life, my every decision, my every breath based on her and her illness.  It is just simply toxic for our whole family.  After all of this time, we know what her care looks like.  I may not like it, but I know what it looks like. 

The twins have to become a priority.  When do they become important again?  Even as I write that I feel such immense guilt it crushes me.  For years the
y have come second.  What kind of mother lets that happen? 

I want to start living my life with more purpose.  I need to do it for my husband... and Nettie... and Chris... I need to do it for Lil.  And I need to do it for myself. 

 

I am paralyzed by that fear.  My dad believes it is that Post Traumatic Stress Disorder.  All I know is I have been absolutely paralyzed.  Finding a new babysitter for the kids has stopped my heart and leaving them is practically causing me to lose my breath.  All of this with Lil feeling good. 

I am just so disappointed in myself.  I should be stronger than this.  What is wrong with me? All I can say is that I am working on it.  I am thinking about all of the strong women I know who I admire.  I am depending on Chris who I know loves me and will be there for me no matter what.  I am counting on him to hold me up right now.  However, I am also counting on myself. 


I feel like I am at a crossroads.  Talking to good friends and family who are working to guide me, praying for strength and guidance, and gaining strength from my beautiful family is all I can do right now.  This is the life of a chronically ill family. 

When someone I know is dealing with grief I always tell them that loss to me is like waves in the ocean.  The pain is sometimes big and sometimes small, like waves in the ocean it ebbs and flows.  But also like waves in the ocean, as they get closer to the shore they fade away.  If you have lost someone very close to you those waves never go away.  My grandmother has been gone for over twelve years and the pain is still so great.  Most grief, though, fades away and you grow from it.  With Lil, it is not going away.  This is never going away.  When we are lucky she has a few good days.  A few good days for a four year old.  How can I even be sad about that when I have seen families around us lose their babies?  I am though, I am.  I am sad that my baby is not going to school and she is in pain so much.  It is very sad to me that she has to rest off and on during the day and that she knows the difference between a pustule and a mosquito bite and it hurts me that I cannot be with her more.  I do not need to be with her every day but damn it is hard to have to leave her so often and worry about her and worry about the twins. 

I do not know how you all will take this post.  What I do know is that I keep this blog because it makes me feel better, to let people know what it is like to live life with a chronically ill child and to spread the word about Lil.  I needed to write tonight.  I needed to cry.  Thank you for listening. 

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.