How to Outswim a Shark Without a Snorkel

This is for all the moms out there who are with me on this journey.  The journey of having a child who has a rare chronic illness. 

 

 

I would not consider myself a movie buff.  When I do watch movies they are generally comedies I have seen a hundred times before or classics I watched with my mommom.  But I remember watching the movie Men of Honor.  It was not the best movie I have ever seen, it did not set my heart on fire but the scene in which Cuba Gooding Junior had to walk across a courtroom in that scuba suit got me.  Watching him take each slow, painful step made you yearn for him to be able to take just one more.  You cannot stop watching, waiting, hanging on to see what was going to happen next.  Having a child with a rare chronic illness means that every day feels like walking across that courtroom in that damn scuba suit, that movie is now my life.  The thing is I am not just living this for a few days or a few weeks.  The suit never comes off.  I carry that suit around all day every day and it is never coming off.  My baby is sick.  She is in pain at some point every day and she is never going to get better.  This is a realization I come to over and over again.  Just when I think I have accepted it, normalcy reigns in some benign way for a short period of time and then the beastly disease rears its ugly head again.  

 

 

My dive suit is my prison.  I never take it off because I never know when I will need it.  When you live with a rare chronically ill child, you have to be ready at a moment's notice to jump into the depths of the dark ocean, terrifying in its unfamiliarity.  Each dive is new terrain that you must navigate... in the complete and utter lack of light.  You do not know how far down you will have to go until you are on your way.  You pray, on your way, that your suit will withstand the pressure.  "It has to, it just has to," you say to yourself.  There is a house to keep up, laundry to do, bills to pay, a husband to love and siblings to nurture and probably a job, hopefully some friends who have loved you enough to stay.  Remember though that this suit never comes off so the weight is constant but the dive just adds to the pressure, the never ending strain.  You go down, down, down until you find the bottom, feel around for a bit and start to come up.  Only to wait for a bit for the next dive.  Is the wait easy?  Is your suit lighter in the interim?  No.  Why?  Because you have been to the depths and the memory clings to you like so much seaweed and sand.  It takes awhile to brush off.  Sometimes it is not even gone before you are diving again. 

 

 

While on the surface, the weight of the suit is something you just carry with you.  Sometimes it is lighter and sometimes it feels like all you can do is lift one foot and put it in front of the other just like good old Cuba.  And  there is the guilt.  The things you have done to her.  The pain you have caused him.  The frustration you have felt.  You have shoved tubes in them.  You have held them down while doctors and nurses have done things most adults could not even fathom.  You have stuck them with needles, over and over.  And then the siblings, the guilt over the siblings.  You have ignored them.  Forgotten their school projects.  How many nights have they showered and eaten at the hospital?  How many hours of TV have they watched because you are dealing with vomit?  The list goes on and on.  

 

The biggest reason to feel guilty?  Sometimes the only thing that lifts the weight of that suit is when she reaches over a takes your hand from her hospital bed.  Or when he splashes around in his bath.  You should feel that way about the other kids too.  What about your husband?  But no, it is only her.  You could have just held her down for two hours while doctors pulled bandages off of open wounds and she will still reach for you... Mommy.  It lifts that suit away and gives your tired, bone-tired, body a small break.  You feel free for just a moment.  Until he coughs or adjusts his body from pain and the suit comes crashes back down onto you as you remember your baby is sick.  Your baby is in pain.  Your baby will always have pain.  And you, you, will always be Mom.  You will always wear this suit. 

 

The suit can be a comfort some days.  It is dark and quiet inside.  It is all yours.  No one can reach you.  No one can hurt you.  You can scream.  You can cry.  No one can hear.  You can scratch and claw and fight.  And when the guilt gets to be too much you can punish.  Punish yourself that is. The inside of that suit is awful rough and it is quite sharp.  Forgot that homework assignment?  A little rub on the ankle will take care of that.  Did not remember the medicine tonight?  A scratch to the shoulder for that.  Can't take the pain away?  Can't save her?  What is the price for that?

 

Someday you know that they might wear their own suit.  They might have their own worries.  They might make their own decisions about which medicine to take: the one that causes cancer or the one that eats away their intestines.  For now you make those decisions and it is ok.  You almost revel in it.  You almost love every minute of it.  The vomit, the hospital, the stress, the deep sea dives, the needles, days spent on the couch, the crying and the fussing, the sleepless nights.  You think that sounds crazy?  Let me explain very simply.  There are some parts of the ocean that have no bottom.  When you have a child with a rare chronic illness you never know, is this going to be the dive where you do not find a bottom?  Most of us do not know how long we have with our babies.  So yes, I will hold her all night. Yes I will wipe those beautiful lips even if it is disgusting vomit I am wiping away.  Yes I will sacrifice my own body so she can have what she needs, what she wants.  People are always telling us 'you have to take care of yourself so you can take care of her' or him.  They do not know.  They cannot possibly understand, unless of course they have lived it.  Of course if they have lived it they would not say that.  When you are taking care of your sick baby, whether you are 3 months in or 5 years in, when you do not know where the bottom is or when it you are going to hit it, you will do anything, sacrifice anything.  It is not dramatic, it is not a scene from a movie, it is so simple.  There is no question.  It is not hard.  Walking around in the murky depths it is just you and your baby after all.  Where it is dark and scary you still have those sweet arms, that forgiving hug and that heartbreaking laugh.  You do not need food and sleep, you don't even want it.

 

So what do you need?  Some of us may say we need our babies to be better but most of us know that our babies are following their paths as they are intended.  You hate it.  It breaks your soul but it is theirs.  So what do you need? You need understanding. You need lack of judgment.  You need kindness.  And people come through.  Thank God, people come through.

 

Tonight my baby hurt.  She hurt a lot.  She cried for me, Mommy, and I held her until she stopped.  I am diving this week.  I don't know how far down I will be going.  I am scared.  My cumbersome suit surrounds me.  It is shadowy, dank and unwieldy.  My vigilant suit protects me but the cost is great.  I do not know who the person is who is going to come out in the end... if there ever is an end.  But this is my life.  This is what we learn to accept.  We accept it in waves because you could never just accept that this is the rest of your life. Worrying about things we will never have answers to and loving babies we don't know the futures of.  Thank you for traveling this journey with us and thank you for trying to understand...  

 

 



Waiting is Not Easy

Our little girl has had a very good run which is clearly coming to an end.  For the past three weeks she has felt so good!  Lil has been running around, eating well and loving life.  Three week is the longest she has felt this good since summer!  It was wonderful to see.  She went out in the snow for a whole 15 minutes.  I went to visit a friend out of town overnight alone (have not done that in years).  Chris and I went to dinner (have not done that in at least 6 months- thanks for the gift certificates!).  I have been wanting to write about it but I have been working on two important writing pieces... more on that to come! 

Nothing good for Lil last very long however and after noticing symptoms starting to pop up, I began my normal examinations and found this...

 

Dr. R says it is an aphtous ulcer, there is really nothing we can do about it but that they can be a sign of Chron's Disease.  We do have some topical medications I can use but Lil did not want them and she is keeping herself hydrated so I did not force the issue.  Each day since I found this Sunday she has gotten increasingly worse but not horribly so.  Temperatures have stayed elevated but have not gone above 101.  She has had a couple of vomiting episodes but not every night.  We are seeing pustules but they are staying small.  Now this does not sound bad until we get to the part that makes her Lil and her disease different.  She always has to get these weird things!  So this does not make her disease different but she is complaining of a lot of pain.  Lil never, ever says things hurt.  When I touch her old wounds she flinches and says they hurt.  What does not look like anything I have seen is that her old wounds are getting these brown spots in them that I have never seen in any pictures of PG.  I have seen them in her old wounds but only once or twice.  Right now there is one in all of her old wounds and some of them are getting bigger and turning red.  What does this mean?  I have no idea.  Wait and see.

Last night she wok up soaking wet in a cold sweat screaming and writhing in pain.  But my wonderful aunt who babysits her told me she was great all day.  Ugh.  Lil is telling me it hurts under her arms when I pick her up.  Could she be learning to play me?  She could but I see her flinch.  I see her waking up from a dead sleep screaming and writhing.  Chris sees it too.  I went to run an errand yesterday afternoon and Chris had to call me because she was crying so much.  One problem is that it is all always worse at night... always.  Another is that I think she always puts up a front for other people when she can.  And thirdly I have been giving her a rescue dose of Mobic (a pain med) in the morning that is probably wearing off in the evening. 

The pustule in her mouth is acting up as well.  I told her it is 'having babies'.  There are two little pustules on either side of it. 

You can see it in her little eyes.  She just does not look good.  That is always how I know.  There is nothing to do but wait.  I might go get blood work just to see what is going on.  Last time we did labs her liver numbers had improved but her Sed Rate just keeps going up and is still going higher than it has been in over a year. 

The Pain and the Great One

This is a post written by a friend in our Pyoderma Gangrenosum facebook group.  I thought it was so poignant that I asked him if I could share it here...

Are we naive? - PLEASE DONT BE OFFENDED BY THIS.
Looking back over photos I took over the years of my leg, and seeing some of the photos posted on here, something occurred to me, there is a lack of outrage. These pictures show a disease that has destroyed the lives of people, its cost them their jobs, their financial security, their family happiness, physical health, cost people their job and the list goes on and on and on. On top of all of this, the pictures are horriffic, if they were shown in public, they would cause outrage, some of them would be mistaken for hollywood movie effects!! Experiencing the condition in person, even as an observer, people see the massive wounds, they smell the 'decaying flesh', the infections, the small of blood. The observer can hear the cries of the patient during pain periods, dressing changes etc, they can empathise with the patient for those few minutes.We, as patients go through this daily, not just for a few minutes but all day. Coming back to the photos, many people make apologies for the photos they post, because they make an assumption that they could offend some people because of the depiction of pain. As a group of patients are we so sensitive about the feelings of other people and have such a concern over other people's feelings that we are afraid to show the public what the true effects of this condition are? I think that having a 'rare disease day' is a wonderful idea, but is 'whispering' to people that there is this condition called Pyoderma Gangrenosum enough? Yes they may choose to google it and increase awareness of it, but they wont see the human cost of the condition, they may well look it up on google and see the picture there but even that doesnt represent the effect this condition has on patients and their families. Is this a chance to be less naive and less concerned about the feelings and sensibilities of other people and to show them the REAL effects of what is still considered to be a 'skin condition'. How on earth can anyone be expected to raise awareness and outrage when PG is listed by medical experts in the same list as dermatitis and eczema? I am not denying the possible seriousness of those conditions but as someone said to me 'skin condition?? You mean, itchy flaky skin?'. Until people see what PG is REALLY like and how it affects the lives of the patients and their families, they will not take it seriously. Recently in the UK, a disabled man was attacked and the outrage was such that £200k was raised for him in charity donations in a matter of days. This is what the power of public outrage can do. So, I ask again, SHOULD we be outraged about our condition and the way we are expected to just manage with our lives without 'getting all worked up about it'? Is it time that WE got outraged and showed the world what we suffer with and what its done to us? Is this the time when everyone who has thought of writing to a magazine or newspaper about their medical misery should do it? Is it time that everyone else should do it as well? If any of you have EVER thought that what is happening to you because of PG isnt right, if anyone has looked at one of the pictures on here and thought it is horrific, isnt it about time we did something about it? We all have a story, we have all been through a journey and unless we do something about it, nothing will get done.
I'm sorry for going on, sometimes it helps and hopefully at least one person will agree with and understand what I have said. In the meantime, I will start to write to magazines with a suggested title of 'I lost my leg to a skin condition' but do any of us think they would publish any pictures of it?

Jon

 

These are old wound pictures.  The problem is it almost always comes back and Lil's is more severe than all patients her age as far as I have been told.