I am plagued by irrational thoughts, and fears.  All the what if’s.  All of the unknowns. 

I have been suffering from an odd form of depression.  I feel like half my brain is depressed.  Half of me feels asleep all the time.  The other half of me is super-duper high functioning.  I am getting done more than I have ever been able to, but in very short bursts.

I feel disintegrated.

My memory is shot.  I have no ability to remember what I have to do…where I have to be…or what is to come.  Yet I have such vivid memories that play over and over and over.

I thought I would take a road trip, then I had a near panic attack at the thought of it.  I am having a very hard time relating to people, and I don’t want to place myself in a position where I am with people and I am uncomfortable.  I think I need a road trip but one that would just loop back home.  So I think as soon as a weekend opens up this is what I will do.  I feel Maine calling to me…

I know I have to calm my mind.  I know that I have to stop having irrational fears…but how can I?  When the biggest fear of your life is realized, how can you not think that other tragedies can happen?  I feel like I am bracing constantly.  Like if I stop pushing against the walls of my life it will all crash down.

So while I am bracing these walls why not redecorate them.  I started in my kitchen yesterday.  Painting over some old brown paint above the cabinets, and turning it a beautiful blue.  I am searching for complementary shades for the walls in the kitchen, and the hall…then a super white pink for the bathroom, with new tile to replace the tiles falling off the wall of the shower, and maybe in due time tile for the floor as well. 

I have been having issues with my house.  The house is so quiet.  It is so empty.  It has rooms that I am uncomfortable in.  So if I spiff up the rooms that I am comfortable in maybe the rooms that I am not okay in will become more comfortable.

I have also been battling with the hedges in the front yard.  Cutting out all of the dead wood.  This is so satisfying.  To clip away, and pull out all of the dead, and allow the hedges to get more light, and life.  Hedges are truly sadomasochistic.  The more you cut them back, the more they thrive.  I have such a love hate relationship with my hedges.  I don’t know if I love them, or hate them…

I was slicing away at a hedge rather enthusiastically, only to discover a cowering baby bird in a nest.  Poor thing.  I don’t know how long the mother was kept away from the baby…so I immediately packed up my clippers, and left the front of the house.  Baby bird is doing just fine…the hedge is looking funky…  Oh well…

So as you know I am an NPR junkie.  Today as I write and type my blog I am uplifted by Radiolab’s Podcast: Fetal Consequences.  This amazing scientific research story explains about how fetal cells remain in mothers for 4 or 5 decades after a mother conceives.   Even if you have the briefest of pregnancies you will have the cells in your body.  Which means that floating around in my body are bits and pieces of Zoë’s DNA.  I could not help but cry at this thought.  It means that Zoë is truly on some microscopic genetic level still living and coexisting with me.

So off I go…out to start my day…just me, and my babies.

I have had all kinds of reactions to Zoë, from her birth, to her diagnosis, to her passing.  People have said, and done all kinds of strange and wondrous things.  The one reaction that I never expected is the reaction to not react.  The complete and utter absence of an utterance.  Not one word.  Not one acknowledgement.  Nothing.

How can this be?  How is it possible that someone you see on a frequent basis can be so devoid of emotion or lack the ability to say, “Congratulations,”  upon her birth and , “I am sorry,” upon her death?

As time goes on it becomes harder and stranger for me to both accept, and understand this position.  Perhaps now so much time has passed that it would be awkward, or strange?

The more I muse on why, or how someone could ignore, or just simply be unable to say anything to me I begin to justify for them.  Perhaps they lack the fortitude to deal with a difficult topic?  But why then could they not even acknowledge when Zoë was first born, even before she was sick?  Perhaps they are uninterested in knowing me personally?  Or maybe it is because I am the embodiment of their biggest fear?

Many people say to me, “If I were in your shoes I could not do what you have done.”  I don’t believe this.  When you are put into my position you will do whatever it is you have to do for your children.  That is what being a parent is.  Or is my view idealistic?  Maybe I am wrong to think that everyone has the ability to handle what I did.  Maybe I represent how people wish they would react…but in reality they know they would not have the strength?

I now look in awe at friends who are going through what I just did, and even I think, “I don’t know how they are doing it.”  I am exhausted at just thinking about what my life was like the last few months.  But I know that if Zoë were here today I would still be doing it.  The crazy trips to the clinic, and the hospitalizations, and the difficult decision making.

Maybe it is the choices that I made for Zoë that are so off putting that I cannot be approached.  Zeppo and I decided to treat Zoë with Chemotherapy, and surgery.  Some parents would not have made this choice. 

Perhaps it is because Zeppo and I decided to bring Zoë home, and to allow her a peaceful ending to her struggle, rather than to continue on a path with chemo, or experimental drugs.

Maybe it is simple not knowing.  Not understanding what caused cancer in Zoë.  Perhaps they think that it is something that Zeppo and I did that caused it.  Maybe they fear that because it happened to us, it could rub off and happen to them?

Zeppo and I, although indescribably upset that Zoë was not cured, are happy with the treatment that she got.  By giving her the chemo, and the surgery we got three more months than we would have otherwise.  In that time she was kept as comfortable as we could get her.  Her pain was managed, and she was loved, and thrived, and got to experience so much in such a short time.

Bringing Zoë home was not giving up.  Her doctors gave us three very good options once she reached Stage 4 (terminal cancer).  We could have continued on with a chemotherapy treatment, but it would not have cured her, and only extended her life by days, if that.  Not to mention she would have suffered side effects on top of her body shutting down.  There was an experimental drug offered, but even if we had chosen that choice she would have passed before the pharmacy and doctors would have been able to give it to her.  If she had received it she could have had a whole host of unknown side effects, and it would not have been a cure.  So we brought Zoë home.

There isn’t a good explanation for childhood cancer, what causes it.  It is not something that I ate, or drank, or something that Zeppo did.  It was not from our house, or where we live.  Childhood cancer unlike adult cancer is almost always not caused by the environment around them.  It was not caused by my genetics, or Zeppo’s, or a combination of our genetics.  Zoë’s cancer was caused by a fluke, a simple cell dividing wrong.  So no…it is not catchy.

If I am indeed the embodiment of this person’s biggest fears, well jeepers!  What pressure.  What a sad, and unwanted position for me to be in.  Although I am suffering greatly I don’t want to cause stress or pressure to anyone else.  I also don’t have the capacity to be worried about such a thing, to be honest.  I have enough with my own mental health, and well being to be worried about.  I cannot be concerned with the fears of others…sorry…I just can’t.  So out of respect I will be silent.  Keep away, and not confront.  Because quite frankly I would not know where to begin anyway.

I don’t know what would cause this lack of empathy.  This passive indifference.  I can speculate all I want, but I don’t believe I will ever understand.  I just chalk this up to yet another strange and wondrous reaction to Zoë.  Yet another way people deal, or don't deal.

I was published on Offbeat Mama!  Check out my post about Mother's Day here.

Zoë came home again yesterday.  Zeppo was contacted by the funeral home, and he made the trip to pick up a small vessel.  It is blue, and has white birds.  It fits in the palm of my hand.

I asked Zeppo where we should place her.  What a strange sentence.  Even as I said it, it the words fell out of my mouth and dropped to the floor.  There is nothing natural about having to think of where to “place” your child.  Zoë should be learning to crawl.  She should be rolling all around, sitting up, and being everything but still.  The thought that she is contained in one small spot is, well…I don’t have the words yet to describe how painful it is.

The vessel is now on my dresser in our bedroom.  I placed her with a jeweled bird that will contain her hair once I figure out a way to secure it.  I lay in bed, and I could not stop staring at the little shrine.

I thought about when she was that small.  When I was pregnant with her, and when I could just start feeling her.  I thought of all of the things I did with her.

Zoë and I went to Philadelphia together.  She was just weeks old and she had her first airplane ride.  We made a wedding dress together.  We danced with Zeppo at our wedding.  She went to Canada, New Hampshire, Rhode Island, Connecticut.  She went to work with me, and we drove around a lot together.  She listened to my secret hopes, and dreams for her.

As I left for work this morning I opened a package that contained information on a Star named after Zoë in the Libra Constellation.  I could not help but cry again.  The other night lying in bed I used the Google Sky App to locate Libra.  It was right over my bed.  I thought of Zoë.  Now I know that as we rotate around the galaxy Zoë’s star will be out there shining away.

My little shinning star.

Our bedroom became a temple, and a sanctuary, and now Zoë is back home with us in this sacred space.

Yesterday I did something that was described to me as, “brave.”  I went back to Children’s Hospital Boston.  Was this brave?  Perhaps some would think that it is, but for me it was like going home again.

Zoë and I lived at Children’s and for Zoë it was truly her home away from home.  For nearly exactly half her life she lived at Children’s. 

Is it hard to be there?  Yes.  But is it hard to be at my house?  Yes.  Is it hard to be at work?  Yes.  Is it hard to be anywhere?  Yes.  So really it is equally as hard to be at Children’s as it is to be anywhere else.

Why did I go back?  Why so soon?  I went back to see my other family.  The family that formed around Zoë.  I got to hug her nurses, and say hello to her Child Life Specialist.  I got to sit for well over an hour and pour my heart out, laugh, and tear up with Rabbi Susan.  I got to say, “Thank you”, again.  I also got to say, “Goodbye”, to a little boy and his mother who will be leaving Children’s for their home next week.

I will always have major mixed emotions about Children’s Hospital.  It is a hospital after all, and an institution, with changing staff, and patients.  There will be a time when Zoë and I will be but a memory, and then poof; forgotten.  Although they do their best to make it fun, and bright it is still a clinical, and sterile hospital.

But there is also so much more.  The memories of taking Zoë for walks around the hallways.  The time out in the garden.  The nights of dancing, and singing.  Dinner “dates” with Zeppo.  My birthday, Zoë’s month “birthdays”.  Cakes, and flowers, and balloons.  Smiles, and laughter.

I will never be able to go to Children’s and not see Zoë.  She is everywhere there, and maybe that is why I was compelled to go back.

Zeppo and I have great dreams, and hopes for Zoë’s fund.  We cannot wait to finish paying off Zoë’s medical bills and turn her fund into The Zoë Faye Foundation.  In doing so I envision us returning to Children’s many times, to help children, and meet parents.  To bring some comfort to what is a clinical and sterile hospital.  So I might as well face some fears and go back to Children’s now.  To look for Zoë’s smile, and laughter in every nook and cranny of the hospital, and to learn how to go home and not cry half the night before we offer help to others.

I am happy to have exchanged some numbers, and I look forward to seeing some of my “hospital family”, and to begin the transition of them becoming my real family.  I cannot wait to talk about weddings, and babies, and graduations, and vacations, and books, and music, and all kinds of random stuff again.

I don’t know how long I will feel like Children’s is my “other” home.  It may not always feel like home.  I am sure that much like Zoë and I will begin to fade away at Children’s, Children’s being a home will begin to fade away for me.  But all those memories of love, and life, and laughter will forever make me smile, and Children’s will always be a very special place for me.