It is not your door.

On October 4, 2007 when I sat in that genetics office listening to the new diagnosis of our daughter our family changed. Each and everyone in it changed.

My world as I knew it, the world as I dreamed about had changed.  Everything about our family, how we lived from day-to-day changed.

I changed the way I viewed arguments and confrontation.

I changed how I looked at my husband.

I changed how I looked at my other child.

I changed how I felt about disappointments.

I changed how I advocated for my children.

I changed who I now had to hire for caregivers for my kids.

I changed how I viewed and spoke to physicians and how I researched ailments.

I changed how I slept, how I ate,  when and if I worked out – everything – how I functioned day-to-day.

I changed friends due to who could handle our new life.  Those that wouldn’t be mad if we cancelled last minute because she was sick.

You get it.  Life turned upside down and there was nothing to do for me…for us but to adapt to it.  In turn, I changed…we changed.  We had to.  Nothing was the same anymore and we needed to be different parents for our child who was also different from anything we’d known.

As we know not all change is good.  But then, of course, when your in it you only know what you know.  And what change may be good to you isn’t to others.

And through that we were judged.  I was judged on how fierce of an advocate I was.  I was judged on how strongly I fought. I was judged on where I would go to get care for her (ummm…anywhere!).  Our lifestyle was judged…should I be working?  I was judged on how we were financially if we hired a live-in caregiver.  I was judged on her ailments and if I was making them up (yup, that was insinuated in conversations…say what?!?)  Questioned on why was she always so very sick through her lifetime (hello….she had a rare chromosome disorder?!?)  It seemed that everyone had an opinion of something.

But…I didn’t care.  Most of the time.  I mean if you knew my life you knew I had enough on my plate to worry than about others judgments.

After Lydia died I changed again.  I buried my child. That kind of event does nothing but change you.  You have to search for strength you thought you never had.  You cry more tears than you have in your lifetime.  Your heart aches like it never has in your life.  An ache you can’t make go away.  Ever.  You have to hold your children up when you want to be a hot mess.  You see things in your spouse you never saw before.  That will ALL change a person. Life events change you.  Caring for a special needs child changes you.  Burying a child changes you.  

I changed in how I viewed my kids doing simple things.  I feared one of them was next (who am I kidding, I still fear that).

I changed in how I saw my strong husband who often cried.  I realized he is human. I see him wear his heart on his sleeve at times but yet close it up like a tight vault at other times.

I changed in how I viewed friends and people who chose not to be present after her death.

I changed in what I thought of people who never said anything to me and avoided mentioning her.

I changed how I look at disappointments…again.  They really don’t bother me now.  I’ve already lived the ultimate disappointment.

I changed how I love those that love me.  And are loyal to me.  I love more.

I’ve changed how I handle drama.  I can’t stand it.  Drama is unneeded stress. Grief is a lifelong stress that will never leave.  I don’t need anymore than I already have. Take your drama elsewhere.  It is unwelcome here.

I changed how I hug (I was never a hugger). I hug tighter (I think).

I changed how tolerant I am of people who complain about things that in the scheme of life don’t matter.

I changed how react to things that don’t matter.  Drop a dozen eggs on the floor – it is ok – my daughter is dead, cleaning up eggs is nothing.  Drop a bottle of pink nail polish on your new tile floor and spend time cleaning the grout, walls, cabinets and rugs…frustrating yes, but I can handle that…my daughter is dead.  My thoughts always go back to DOES IT REALLY MATTER?

I changed in how I felt about material things, vacation and other pieces of my life – nothing excites me.  I feel attached to nothing.  At least right now.  I’d give back everything to have her back again.

Once again you get the picture, life changed because I watched a casket go into the ground and all I have left is a headstone.  And pictures. And videos. And clothes.  And pillows that no longer have her scent (even though I still search endlessly).

And not all change is bad.

I changed how I viewed life.  When you get that close to death you realize life is short.  So…live it.  JUST LIVE IT.

with changing, comes judging.  Comes opinions.  Come thoughts. Comes curiosity turned to suspicions turned into others reality of what this life must be like.

I remember years ago, I think before I was even married –  Tom and I passed a house.  A nice farm house in the country.  At the time I envied those that had houses as we weren’t yet established.  But, I digress…the door, was something my eyes fell on.  I felt it didn’t do the house justice.  I commented on it and Tom said “why do you care, it isn’t your house.  You don’t have to like it, you don’t live there.” He was right.  It wasn’t my house.  I shouldn’t care and it was a good lesson. One I try (a work in progress) really hard to remember.

But yet, post special needs, post death I am still judged.  We are judged.  How we live our life, how we react to situations, how we handle things, how we spend our money.  How we support others. How I fight for the oil.   You name it, I’ve heard it.  It, I guess, is human nature that we judge.  I’ve done it. We all have.  But have we stopped to ask ourselves why?

I am very open.  I blog, I post. I don’t tweet..yet.  I talk openly about her, about her passing but yet even my closest friends who know me well don’t know the thoughts I have in my head when my eyes open in the morning and when they close at night.  When each time I have to tell myself this is real.  This is our life.  They don’t see all the tears I shed in the private of my home, car or public place where missing her hits me.  Many see the smiles and how we are living life and assume they KNOW and judge.  They think they know.

Like the door, I’ve realized since Lydia’s passing even more is that someone else’s door and what is behind it is something YOU truly can’t judge. You have no idea.  Facebook, Twitter, blogs – they truly don’t let you into the heart and mind of someone. And even then…if you were privy to that you still don’t know.   Why are we so busy judging?  Step back.  Is it your door?

A little story…

A friend of mine lost his wife a few years ago.  What seemed (see, I say seemed because I really don’t know) a perfect relationship was riddled by cancer and she passed away.  He, being a positive person, pulled up his boot straps and carried on raising their two young children.  After about a year I saw him at a party and I asked how things were.  He quietly confessed he was dating someone and while his wife was his soulmate and true love, he was very happy.  But, I knew and he confirmed he couldn’t share openly yet because he would get judged.  Judged about dating someone “so soon”, judged about if the person was right for his children, judged about everything under the sun that was really none of anyone’s business.   How sad I thought…he went through the most traumatic event someone could, continued being a guiding light for his children and he still couldn’t share something so positive and good for him.

So, why am I judged when you have NEVER walked in my shoes?  When you haven’t raised a special child and buried one? When you have your child cry at night missing pieces of their life. When you have your son ask you how you die so he can go to heaven and ask God where Lydia is. When your husband says “I am just so sad.”

Why do you judge me without ever even talking to me or asking me your curious questions?  Are you afraid you’ll get different answers than are what in your thoughts or what you think you see?  Are you afraid you’ll see that I am a hot, strong, beautiful mess?  (a friend said that, I don’t think I’d ever call myself beautiful).

Because the reality of it all is….most of you don’t know.  And I hope you will never know what this is like.  So, if you don’t plan to walk in my shoes (and I hope you never do), don’t think you have the right to tell me how I should walk in them.  And don’t always think my shoes are comfortable.  Most days they are ok but some days they aren’t. I’ve just learned how to make uncomfortable somehow still look good.


One thought on “It is not your door.

  1. Hi. A friend of mine posted a link to this entry. My son is 3 and also has a Rare Chromosome Disorder that predisposed him to Epilepsy and I am fighting for oil for him now.

    It hurt my heart to read you lost your daughter. I’ve never suffered such a profound loss. But the fear of it haunts me.

    I do know the disappointment when those who you thought would be there aren’t. And how people insinuate that you are making it up “he sure is sick a lot” or instead of stepping up and being there tell you that you’re crazy and overreacting.

    Fighting so hard for everything is tiresome. Fighting for doctors. Fighting for friends. Fighting to be heard. Fighting for the right medicine.

    Thank you for sharing your story. It makes the world seem smaller. In a good way.

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