Thursday, September 29, 2011

Just a day

It's the eve of my birthday.  When you are a grown-up not celebrating a birthday ending in a "0", it is just another day.  That is, it's meaningless unless you have a calendar-obsessed autistic kiddo.  Heck, being a single mom offers few opportunities for celebration for most of us, so if my kids want to celebrate me and make an attempt to bake a cake or write cute cards, I'll take it.

For the past decade, there have been homemade cards from the kids, dinners filled with good food and better drinks to go along with the good friends, and even some generous gifts.   I'll let myself indulge in remembering a meaningful and loving birthday five years ago.   (There have been the duds, as well, those being the nights I spent home alone).  For many years, my group of girlfriends celebrated everyone's special day with a dinner out.  In 2000, my preemie baby girl was still in the hospital on September 30th.  My dear friends decided I needed some cheering up and took me out to dinner, with the night ending with a visit to the NICU. 

A meal I don't have to cook and a margarita attached to good friends is the plan for tomorrow night.  IF the (brave) sitter shows up, IF the kids don't freak out when she gets here, IF Andrew's autism doesn't blow it all.

My ex-husband has been taunting me on a frequent basis in recent weeks.  A zinger he sent a few days ago: "I am truly sorry you are lonely".  I laughed.  For what it's worth, he always stunk at birthdays, anyways.  Maybe he gave up porn and other women for the day in honor of my birthday :-)  In reality, I have more important things to focus my energies and time on than the man who hurt me, hurt our children, and finally hurt me in front of our children.

Tomorrow morning, I begin my birth day (which is not even my real birthday, but that is a whole other story) entering the world of civilized warfare that special education dispute resolution is.  I'll connect with a dear friend whose life mirrors mine, have lunch with my surrogate "pseudo-mom", check the mailbox for cards and not be disappointed the one I want to be there won't be, and hug my kids more than they want to be hugged.

Maybe the day will include good chocolate, good wine, and a Yankee Candle.  I know it will include being around the people I love the most: Julia, Andrew, Emily, and Sarah.  That, along with seeing dear friends, is really the best gift in the world.

Saturday, September 24, 2011

accepting autism

I didn't sleep last night.  Still reflecting on Andrew's doctor's appointment and the visit to his school, the sleepless night brought a realization.  No one can get what it is like to have a child with autism unless they themselves have been touched by autism, or a similar disability.  No, it's not the worst thing in the world, nor is it something which is terminal.  I totally get that many families have more challenges to live with than autism.  It's not like Andrew will die because of autism, yet in some ways it seems like a constant mourning process in concert with loving and celebrating him as I do my other kids.  His autism is never going to go away.

Who knows the "whys"?  I don't.  Was it the 5 day long hellish Pitocin induction?  Or perhaps the fact I chose one type of therapy over another when he was in Early Intervention?  Or worse, allowed him to be "screened out" of EI at 16 months?  Or the abysmal special education services he received from perhaps well-intentioned people who simply didn't get him from 2nd-4th grade?  It does not matter.

The critical comments and judgement from some people is part of the life of parenting a child with ASD. (It's amusing that a common trait of these folks is they don't live with autism or similar challenges.)  People tell me, sometimes bluntly yet often not directly, how annoying, crazy, and awful Andrew is.  He absolutely is picky, but he is also a very good judge of people.  I only want to be around people who don't judge and who love him how he is- autism and all.

This is life- it's not sour-milk-complaining.  The ups-and-downs of autism dictate what our family is able to do.  Long ago, I accepted this.  My heart breaks for a young man who deserves so much more and who is trapped in a body which has this disorder in every cell.

I've faced my share of challenges.  I've given birth to a preemie, been through an awful divorce preceded by domestic violence of the worst kind, and faced my own own health issues.  There is not a choice but to support my son and to live with the autism.  I try the best I can.  I don't expect much from others anymore as my experience is I usually ending up disappointed.   Too many people have let me down.  More importantly, too many people have let Andrew down.  I pray that God gives me the strength to love and care for my child in the best ways possible for him.

Wednesday, September 21, 2011

Happy Birthday, E!

After four shots and a physical... E started really enjoying her 11th birthday!

Her beginnings in this world were certainly dramatic.

(See below from last year):

4 pounds to 10 years

It's hard to believe 10 years ago, I was 32.5 weeks pregnant, getting dinner ready and putting kids to bed, having made plans to drop off Andrew with my mom in the morning so I could go in for a routine non-stress test. The baby flunked...

A day of tests, an expectation of a week or two hospital stay to let baby cook more, and then the specialized ultrasound which healthy babies score 6/8, she got a 1/8, which led to an emergency c-section (the "get your husband to the hospital NOW" kind)... 

We welcomed E Elizabeth (no, not named after Clifford's friend) at 8:37 p.m.. A bit loopy from the drugs and the surgery, looking at this little 4 pound baby in an incubator in the special care nursery, I could hardly believe this tiny being was here. After all, she wasn't due until November and there were no problems with my pregnancy except for the expectation of pre-eclampsia setting in somewhere around week 36/37 as it had before.

E was beautiful, her skin was dark (like mine- one came out looking like they had an Indian mom!), but she had "no meat on her bones".  Just don't tell her she looked like an under-nourished chicken as she takes great offense.  She had a hard time eating (and pumping was a disaster), gaining weight, and keeping her body temperature up.  She was the size of a doll.  So many friends sent flowers (Kim sent some before Em was born when the plan was for me to be hospitalized for a week to get her to "cook" longer), quite a few came to visit her (I have the pictures of everyone suited up in gowns to come into the NICU), and more than I know were saying prayers.  After my discharge from the hospital, my few close friends played such a special role in visiting her, even bringing me in for a visit after my own birthday dinner. Thanks, Kim, that is a night I won't ever forget.

My tiny preemie is going to be "double digits" tomorrow.  She is the kindest kid you will ever meet and brings so much joy into our family.  She truly is everyone's "best friend". 

Well, here we are in 2011 and this 11 year old is one of the most sensitive, spirited and bright, kids I know.  She and I have had such a fun summer together, and in many ways she is more like me than my other kids.  Happy Birthday, E, I hope all your dreams come true!


Saturday, September 10, 2011

A September 11th Blessing

10 years later

At 10:42 p.m on 9/11/97, I gave birth to a beautiful 6 pound, 15 ounce baby girl.  Three months later, she almost died after her heart stopped working.  She has faced so many challenges in her life.  Today, we celebrated her birthday with a small party with friends who love her.

On her 4th birthday, our country was attacked. That evening, we muddled through a birthday celebration with our close friends J and J and K and J and their baby, M.  Once the kids were settled, we adults all sat, in shock,  and watched a Presidential Address "from a secure location" on the TV in my living room.    In retrospect, I am glad to have shared such a painful day with our then very best friends.

The day after, Julia drew a picture of what she described as a "plane crashing into a building".  I still have that picture.  The comments people made/make to her which followed in the days and years were not fair.  She's just a kid.  What happened on that day is awful and evil, but it doesn't define her or her birthday.

It is my prayer and biggest hope that Julia is happy and thrives and accomplishes all she wants in life.  I love you, Julia Grace.  May you have a very Happy Birthday and a year filled with many blessings and much joy.