Beach Day at Safi's school........

Mother's Day....

Mother's Day.  When you're pregnant and you watch all of the Hallmark commercials, crying because your brain is flooded with hormones and thusly reminiscent of a big, smooshy sponge cake, you cannot wait for that first card.  That first kiss and a hug followed by a elbow pasta art masterpiece or a hand print plate.

You sit and you dream.  Its really nice and lovely to say that you dream of all of the wonderful things your child will do and experience as if these dreams you dream are really for them.  In fact, these are your dreams, your hopes, your wishes.  There's nothing wrong with that.  No one would dare shame you for closing your eyes and imagining a your beautiful child to be...well, beautiful.  No one would give it a second thought if you recounted a dream you had of your child dancing in a ballet, playing Mozart at age 5, cooking along side you in your kitchen as if he/she were a master chef.  No one begrudges the parent to be's dreams, hopes, and wishes.  This is as it should be.

However, what happens if your child is different from the norm?  Cleft palate, Down Syndrome, CP, Autism,  mental illness, the list could go on as just as in nature every flower is different so are our children.  What if the  sweet, innocent, whimsical dreams that you dreamed watching that Hallmark commercial when you were expecting are not to be?  Who is there to support you, grieve with you, and tell you nothing is wrong when your heart palpably aches?

The book shelves are filled, positively filled with books about parenting children with disabilities.  They painstakingly take you through their experience learning that their child would be "different", coming to terms with it, coping with it, and ultimately what a blessing it has been for them.  Go on message boards and read the replies that most parents get from a newly diagnosed child...the diagnosis doesn't matter much, you'll see the same theme over and over again.  "You were chosen", "Your life will be enriched beyond your belief", "I am the luckiest person on earth to have a child with X", "This is such a blessing", "You are so lucky to have a such a special child."

So, here's my problem.  Where are the books that give parents of special needs kids the permission (as if that should even need to be given) to grieve the death of the Hallmark dream?  Where's the message boards that get down and dirty into the pain, anguish, anger, resentment, and grief without all of the the fluff at the end?

The definition of grief: keen mental suffering or distress over afflictionor loss; sharp sorrow; painful regret.  My experience as a mother has been all of these.  Mental suffering and distress over the loss of the dream of the life that I and my family would have.  Sharp sorrow when I witness the daily, never ending struggles that my children endure and that Mike and I will endure for the rest of our lives.  Painful regret when I try to remember if I had the flu when I was pregnant, if I took enough folic acid, if I ate too much mercury or not enough fish for the Omega-3's.  As I write this I am acutely aware that I am using my backspace button far too much, as I fear how you will think of me. That only makes me want to type faster, and harder.

Let me take a moment to share with you my Hallmark dream.  Mike and I were going to take our children to India.  We were going to take them to Morocco so they could see where we honeymooned.  We were going to have more than two children.  We were going to strive to raise children that were happy, whatever that meant for them.  We were going to allow our children the freedom to find their own paths, supporting them along the way and relishing in their successes and the lessons learned from their near misses.  We would take the girls on trips to visit both of our families.  We would do family BBQ's and camping trips with our friends and their kids.  I was going to go back to work when they were school aged.  I was going to do a backwards longitudinal study on antisocials to try to come up with better interventions when these people are children and before they are incarcerated and a trail of victims is left in their wake.  Mike was going to retire.  After 25+ years of working in a maximum security prison, he was going to find a passion and really live.  Maybe we would have grandkids, maybe not.  I kept my favorite woven wraps and baby carriers to pass down to the girls and secretly hoped they would let me use them myself with their babies.  We were going to have a life that goes through all of the phases....raise kids, advance career, watch our kids create their own paths/families, grow old, relax and enjoy looking back on the life and lives we had created.

Dead.  Not going to happen.  Not our life.  Mike can't retire yet because he's driven to retire at the highest amount possible because then when he dies the girls (if deemed permanently disabled, we know Safi qualifies) will get his pension until they are dead.  I need to be with the girls.  At this point I'm lucky if I have the time and the energy to do our grass roots summer school, let alone resuming professional activities.  I hope to one day have things stable enough at home that I can find per diem work or advocacy work that uses my degree and knowledge while still allowing me flexibility for the girls.  The dream now consists of trying to find a way to make the income needed to buy a large parcel of land somewhere near a University so that we can build a new kind of board and care.  Think summer camp cabins strewn over a large property where people with Autism or other disabilities can live as independently as they are capable with the support of 24 hr staff.  I can provide supervised clinical hours to psychology students (that's why it needs to be near a University) which will get us fresh, excited, new professionals at a fraction of the cost of licenced people.  Mike will help build programs for residents that will partially make the facility self-sufficient (solar power, vegetable/fruit gardening, dairy cows, chickens, goats, etc) but also allow residents unable to work in a conventional job an opportunity to have purpose, pride, and interaction with the larger community through small scale farmer's market type sales.  We've been refining our plan since Safi was about 2.  It's special needs utopia....and its a dream born out of Mike and I's abject terror at what fate will befall the girls when we die.  Yep, they're 4 and 6 and we've been seriously planning for our death for more than half of Safi's life and all of Nixi's life.  While this new dream, a much more noble path than the other, will hopefully be an amazing start at a new way of treating our dependant adults in America (or Canada if we chose to head across the border, eh?).....it means a lifetime of work for us.  No retirement.  No relaxing.  No golden years.

Sound a little woe is me?  It is.  As selfish as my grief may seem it is no more self centered than those whimsical dreams we all have of everything being a Hallmark commercial.  Because those are OUR dreams, aren't they?  And that's ok.  Its normal, its human nature, there should be no shame in either.  We didn't chose this path.  We were drafted into this war, remember.  We aren't special or "chosen", we are two people who's genetics comingled to create two beautiful but seriously troubled lives.  Our kids didn't ask to be born.  They didn't ask to have us as parents.....though the spiritual side in me likes to think that these lost souls drifting in some parallel universe thought "Well, as long as they're hell bent on doing this we may as well drop by."  Here we are.  This is our life and we're going to make the most of our lives because our daughter's lives and well being depend on it.  The dream quickly replaced by reality.

We accept this and we are in it for the long haul.  But I'm pissed.  I'm depressed.  And I'm going to be, on and off, for the rest of my life.  That is fact.  For every new stage of life that my girls reach, for every success, there will likely be close to equal measures of pain and anguish.  I hope for equal because some days, some weeks, pain and anguish rule.  Their lives will NEVER be easy, and everyday ho-hum.  The energy that Mike and I put out to make their day ho-hum and/or easy is exponential.  I do not point this out for applause or kudos, neither of those will give me more sleep, more peace of mind, or energy.  I point this out because it is the reality of being a special needs parent...and its damn depressing.

So, the next time you hear or read a special needs parent sounding scared, angry, sad, or ungrateful SAY NOTHING.  LISTEN.  The attempts to put the bright side spin on things or to cheer us up is a) dismissive of our process, b) at times absolutely insensitive, c) outside confirmation that we are totally screwed, if we weren't you wouldn't have to cheer us up would you?..in this case, uh, yeah, already got that.

If you are a parent of a special needs child, PLEASE, PLEASE allow yourself to grieve any damn time you need to.  It does not mean that you don't love your child.  It does not mean that you are not grateful that they are yours.  It does not mean that you regret having them or regret who they are.  It means that you are a healthy, functional person who sees all dimensions of life.  It means that you are allowing yourself to feel and be authentic instead of shutting down the feelings that are "ugly"...because I promise you, they will seep out in ways you never intended and poison the good.  If you cannot be honest with yourself, if you cannot be authentic in you pain, rage, and disappointment I challenge you to be absolutely authentic in your love, joy, and pride.  You can't do it.  You can feel approximations of all those things, but not the pure experience.  You can't have light without dark, its just the way it is.  I accept you, warts and all.  I will rage with you.  I will cry with you.  I will look into your eyes and nod at your heartbreak over your child never being a ballerina, a veterinarian even though she loves animals, a race car driver, a college student, a dad, a mom.  No judgements here.  If I am to accept my children just as they are, I must accept myself and you just as we are.    And I do, whole heartily....even when that heart is shattered to pieces.

So, on this Mother's Day I go to sleep with a gorgeous beaded bracelet on my wrist in rainbow colors from my Nixi.  I will wake up to a lovely melamine hand print plate hanging in the hallway from my Safi girl.  A new week will begin, starting our transition to summer and the end of school.  I predict that I will feel great joy, fleeting moments of intense anger, a good helping of sadness, and a lot of the daily grind in the week to come.  Nixi's Risperidone was increased, doubled, and she's been extremely emotional for the past two days.  She remains psychotic but we still see tangible gains from the meds and she had two of the best days at school that she's ever had this past week.  Reminding myself that we aren't shooting for no symptoms, just better quality of life and a lessening of symptoms.  I need to speak to the school about meeting with Safi's teacher for next year.  I need to meet the soon to be new principle of Safi's school for next year.  I need to figure out if it's reasonable for Nixi to stop napping next year, as Teacher Mel's 4 year old class will cut that out.  I have a lot of fine tuning in the week ahead.  It was a nice Mother's Day.  My girls' love me and they made that absolutely clear.  My tank is a little more full today because of it.

Sarah