All About Me

I love music, all kinds.  I love opera (although I have not been able to go in years), I love classical, I love blues, and I love old school rap. Finding this new radio station that plays all old school rap that I listened to in high school has been a goldmine.  The other day I was driving alone in the car and a song came on that brought out my inner Snoop and before I knew it was bee bopping along singing my heart out.  And then it was like someone threw a cold bucket of ice water on my head and I stopped. 


Chris has been really worried about me.  He says I am miserable.  I just stare off into space and I cannot relax.  He is right.  We have been blaming it on my headaches but actually my headaches have been slightly better.  So what is it?  What has me crying in parking lots and unable to sleep?  Why can't I enjoy a song in the car? Why am I at a kids' birthday party staring out the window?  I do nothing for myself.  I do not go out with my friends...ever.  I don't go to yoga or even spend time with my husband.  If Lil is starting to feel better, then why?

All I want to do is be with her.  Right now she is what makes me happy.  Yes, the twins make me happy.  Chris, when you read this, I am sorry.  I love you.  Although I do not want to compare Lil to a small sweet child who is dying I remember once when Lucy was dying I was sitting in the room talking to Nicole, her mom.  We were talking about how everyone kept telling her to eat.  She just looked in my eyes and said "Eat?" and  we both shared a moment of understanding.  That understanding was not necessarily about a dying child.  For me it was about a child in pain.  When your baby, your baby who you are supposed to protect and care for and advocate for and take care of, that helpless child with her still soft and chubby arms and feet, and kissable cheeks, who likes to cuddles and have blankets is in pain you do not want to do anything for yourself.  You just do not care.  That whole thing about 'if you don't take care of yourself you can't take care of her' is bullshit.  When she can't eat for days at a time because her belly hurts so much you do not want to eat.  When all she wants to do is sit and watch movies because her hips hurt, you want to carry her around.  My little girl can't wear socks some days because it hurts too much.  Socks hurt too much.  As a mother how am I supposed to allow myself to enjoy anything when my baby's feet hurt so much that she cannot wear socks?  Or her mouth, from ulcers, hurts so much she cannot eat? 

How can I feel ok about who I am as a person when I then have to sit on that beautiful baby and squeeze her cheeks while she screams that I am hurting her to get her to take 4-7 vials of medicine every night only to watch to her vomit it all up.  I have tried everything else, I am as gentle as I can be, I have reached out to the doctor and our nurses.  I can't stop thinking about it and I hate myself for not being able to figure it out.

My mother in law has recently helped us find a Pyoderma Gangrenosum Facebook group.  Chris is very concerned about me reading it.  The problem is, and he agrees with this, we are learning so much.  When these adults describe their pain and daily struggles, we know how Lil feels.  For example, she will sometimes say her scars hurt.  I always felt torn by that when there are no open wounds on them.  Why would they hurt when they look so good?  Until the other day when I found a post on this group from a person who described what his scars, which are 4 years old feel like.  Here are some phrases from him and comments from him and his fellow PG sufferers:  intense, insane, life changing pain, exploding from the inside out, pliers ripping my toes off, searing hot knife constantly slashing my flesh, vice grip constantly gripping my foot, red hot ants trying to chew their way out of my flesh, pain never goes away, issues depending on movement and how clothes affect my skin, hurts now as much as it did when it was open.  Many comments just simply agreed with the descriptions and talked about pain killer options.  These terms have been running through my brain like a continual recording. 

And so, is there emotional energy leftover for Chris and Nettie?  How about my husband?  Where do I fall in the hierarchy?  Exactly...you do the math. When people compare their lives to mine mentioning that mine is more difficult I always say everything is relative and I mean it.  However, in this case I have to say only a few moms can understand what I mean.  Moms who have seen their kids in pain know what I mean but only to a certain extent.  Moms who have watched their kids live with pain over long periods of time, who have had people disbelieve their pain, who have had to fight for them day in and day out.  These moms can truly sympathize with the depths of my pain and sorrow right now. 

So why am I sharing this self pity with you?  I am usually pretty good at dealing with things while they are going on; I pull on my big girl boots, lace them up tight and do what has to be done.  But when things start to calm down, that is when my strength wears thin.  It is always after she starts to feel better that I fall apart.  Don't worry.  My pendulum will fall back to middle, it is just a matter of time.