Saturday, May 2, 2015

Meet Me at the Moon

 

It has been quite awhile since I have written a post.  I have been reflecting on why.  Is it because there are two people who  have hurt us recently and I am trying to protect us by staying private?  Is it because I have allowed myself to become overwhelmed by life?  Is it because Lil has actually not had any emergencies and I am afraid to invite the devil?  Or is it because when I am hurting I quickly fold up inside of myself like some kind of child's attempt at origami? 



These are questions to which I do not have answers and frankly it does not matter.  I have been a hermit crab curled tightly in his shell, an ostrich hiding his face in the sand.  Look, a person can only take so much.  You are all so wonderful.  You tell me all of the time how I have such a positive attitude and that I am so strong.  I will tell you that it is not something I try to do.  It is something that comes easy to me.  If you follow my story you know that my mother died three weeks before the twins were born.  She and my father (along with the rest of my family) taught me well to love life and see the beauty in it. 

Lately though, life is very heavy.  I cannot seem to lift the boot of my dive suit and take that next step (remember Cuba Gooding Jr.?).  Even now, as I write this post, I am stopping every 3 minutes paralyzed by my own feelings of inadequacy.  I am just. trying. so. hard. And nothing is working out.  Not with my career, not in my home, not with my kids... nothing.  I learned this week that so much of stress is about perception.  Stress can be good and it can be bad depending on that perception.  Right now my stress is of the bad variety.  Like a pesky little insect problem, it is wreaking all kinds of havoc in my life.  This is only one layer of the problem.  The guilt is the real monster.  If the stress is the pesky problem, the guilt is the structural damage. 

I am a problem solver.    I have a plan.  Go back to the therapist.  Alana is going to set up the calendar on my phone.  I am going to take on more work this summer to help with finances and the learning that goes with my work.  The list goes on. But here is the bottom line:  I am worried about Lil.  She has her good days and her bad days.  She has a lot of pain in her joints.  She tells me her mouth hurts a few days a week and that she cannot eat. 
I still cannot get her vaccinated.  She cannot go to school.  The longer she goes without any big issues The heavier my dive suit feels, the darker and deeper the water looks.  This is not something I am able to control.  Don't tell me not to worry.  She is my child.  She has a horrible disease.  It is my job to worry.  I am her doctor in so many ways.  Dr. R would agree.  He is the expert in medicine.  I am the expert in her.  That is not to take away in any way from all things amazing, learned and knowledgeable that are Dr. R. 




Here is a story that highlights something I want you to understand.  People in our lives, those that love us, want us to be normal.  In return, I feel pressure to be normal.  We are not normal.  That is ok. 
          I recently went to the wedding of my very dear cousin.  She is the kind of cousin who you have memories of throughout your entire life, she remembers every stage- the good, the bad, and the ugly.  She is the kind who really understands you even though you do not spend much time together.  A certain song comes on, you can catch each other's eye and you are instantly transported to being eight.  Everyone else was spending the night at a hotel the night of the wedding including my dad and stepmom and lots of aunts, uncles and other cousins who fit in the same category as the cousin described above.  You all know how in love I am with my dad and he was really pushing for me to stay the night, they even offered to share their hotel room.  I made up some excuse about having too much to do... over and over again.  When the mother of the bride asked why I was not staying I told her I did not feel comfortable leaving the baby.  She nodded in understanding but I stood there stunned.  I had not realized until that moment this was the reason.  I had lied to my father (unintentionally) because I knew he would tell me it was ridiculous.  But it is not.  I cannot just leave her on a whim.
 
 
This is a phenomena I notice happening more and as time goes on; me trying and trying to pretend that we are a normal family, that Lilly is ok and that I can go on with life.  The truth lies somewhere in the middle.  We can live a normal life at times and at times we cannot.  The weight, the pressure, comes from the fact that the decision of on which side we land lies with me.  With LillyAnna that can change within the hour.  She will be playing outside having the time of her life when suddenly she needs to rest. 
 
 
Or she will wake up in the morning feeling awful and that is how our whole day begins.  OUR whole day, not just me but my six year old twins and my husband and me. 
 
 
Or she can be just wonderful all day long.  She will eat and play and be happy.  Or she can do an activity that will wear her out.  She likes to do some kind of gymnastics poses,  I do not know where she learned them.  She calls them her "moves": I am going to do my moves.  The other night she was facetiming with Poppy and doing her "moves".  Afterwards I put her in bed and she told me her elbow hurt. I said that maybe she bumped it.  She said (with the saddest little three year old face ever) "No mom, I just cannot do my moves anymore.  They give me owies."  I have not seen her do her "moves" since. 
I get to cuddle with this adorable, tenacious girl every day.  I get to be a part of her world.  Below are pictures of her planting a bulb.  It is to a flower often called the resurrection Lilly.  Her wonderful Aunt Tina  bought it for us.  In my past life I have overcome struggles and moved on; in this life I resurrect myself over and over again.  Each time I learn a lesson.  Sometimes I am a slow learner.  This season's lesson is forgiveness.  I am forgiving myself.  I am resurrecting myself.  Right now this is all I have to say about that except that to move forward we all have to forgive.
 
Lil is three.  My only hope is that she is as forgiving.






No comments:

Post a Comment