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.