busting up misconceptions

I’ve been trying to write about Evelyn’s recent gasping for air-turning blue-ambulance-hospital experience for a couple of weeks.  I’ve come to the conclusion that it is not meant to be written–at least not now.  So I am putting it away and writing about something else.

People often ask me how I do so much.  Because I am asked it so often, I have given it some serious thought.  I’ve come to some conclusions.  People ask the question with some incorrect preconceived notions.

The bottom line is that we all make choices about what we do.  And I am here today to destroy any respect you may have previously had for me 🙂  No seriously.  You probably think that I do everything that you do plus the things that you see me doing–like schlepping Evie to umpteen appointments, that you don’t do.  No.

I don’t clean.  Nope, I’m not kidding.  I have a housekeeper.  She comes once a week and digs us out of our filth and clutter.  Were it not for her, we’d be in some serious trouble as proven by weeks that she hasn’t been able to come.  Sometimes I will run the vacuum quickly across the floor but that is pretty much the extent of my domestic efforts.

I don’t really put laundry away.  We mostly live out of laundry baskets.  I’m not exaggerating in the least when I say that we own 10 baskets for clean clothing and 4 baskets for dirty clothing.  I do a pretty decent job of getting dirty laundry clean.  I actually empty the clean baskets—once a month?  Maybe?  On a good month.

I don’t iron.  Nope.  Not at all.  It doesn’t make sense to me.  So we wear clothing that we don’t need to iron.  I haven’t ironed in years and I’m not ashamed that I choose to spend my time in other ways.  In fact, I am proud of it.

I neglect my appearance in other ways too.  I don’t style my hair-it is almost always up.  I don’t wear makeup.  I don’t get my haircut but a couple of times a year.  I don’t color my hair.  I don’t shave–maybe a couple of times in the summer.  I mostly bathe with my children.  I steal a couple of adult showers a week but that’s it.

I sleep perfectly well when there are dishes in the sink–amazingly, they are always there in the morning for me to wash.  I don’t have much to shovel in the winter because we have our driveway plowed.  In the summer, we have our lawn mowed and raked and I just take care of the fun stuff like planting things that make me happy.  Truth be told, if it were up to me, I would turn our lawn into a field of wild flowers, tall grass, and vegetable gardens that someone else takes care of.  But I have been vetoed on all of these whimsies.  Well, I am slowly achieving the wild flowers but shhhhhh.

So now that you’ve lost all respect for me, let me try to build it back up to a normal level.  I am pretty much a single parent during the week with Scott being down in Boston.  He is home for about 48 hours a week.  We don’t want to spend our weekends cleaning or doing yard work.  We want to spend time as a family.  And quite frankly, I need to spend time alone rejuvenating and energizing for the long week ahead…so I do.

We have a lot of therapies and appointments during the week.  My calendar would probably boggle your mind.  When we aren’t doing those things, we chill.  That doesn’t necessarily mean sitting on our bottoms and doing nothing; although, sometimes it does.  It means we don’t do anything that we don’t feel like doing that doesn’t have to be done.

I had to let a lot of things go in order to be happy.  I’ve spent too much of my life worrying about things that don’t matter.  When I am old and look back on my life, I want to see days that were filled with laughter and love.  I don’t want to wait until I am 80 to realize that there is no prize for having pressed clothing or the most organized home.  I want my children to remember long hot summers filled with swimming until their hands look like prunes, bare feet, and a mother that encouraged them to seize the day and get dirty.  And eat big fat ripe strawberries right off the vine.

So yeah, back to my point.  I don’t do nearly as much as you think I do.

waving

Today was the second day that Evelyn returned my wave from the school bus window.  I’ve been waving for nearly two school years.

Love explosions.

Isn’t it amazing how one little palm held up to the glass can make my heart soar.  How it can leave me standing in the driveway waving frantically and saying, “yes, wave.  you’re waving.  you’re awesome.  you’re waving to mama” etc.  Even though she couldn’t hear me.  I went on and on.

She left her hand against the window and a little smile touched her lips.  I think she knew that her mama was making a spectacle of herself and was amused.

After her bus was out of site and I was walking down the driveway, I realized that I had a huge grin on my face.  I love when that happens.  Not even realizing that I am smiling.  I don’t think that I used to do that before I had my girls.  Now it happens all of the time and I love it. How extraordinarily lucky am I to be so happy that I get to walk around smiling without even realizing it?

Have I mentioned lately how much I love my girls?  I am grateful for the beautiful simplicity that they have brought to my life.  I am grateful that they have boiled happiness down to a little palm pressed against the window of a bus.

acceptance

Acceptance is such a funny thing.  Knowing what to accept and what not to accept is not always clear–for any parent.

My journey to acceptance of Evelyn’s special needs has been tumultuous and emotional.  And sometimes I don’t know if I am accepting too much or not accepting enough.

When Evelyn first started showing signs of physical developmental delays at a couple of months age, I wrote them off to mere differences in development.  Over time, although it became more clear that her differences were of a more significant nature.  But I tricked myself into believing that she was just moving at her own pace–which she was—but I couldn’t (maybe wouldn’t) wrap my mind around a permanent disability.

Let me back up.  Up until my pregnancy with Evelyn, I’ve had a pretty easy life.  I have wonderful parents who have always supported me.  I’ve always felt loved.  I never really worried about anyone because for the most part the people that I loved were healthy.  I would say now that I had an unreasonable faith that everything would always be okay–that my life would work out the way that I had expected it to.

Before Evelyn had an MRI at two years old, there was a round of really scary genetic tests.  She had been diagnosed with hypotonia (which means low muscle tone) but they didn’t know what caused it.  So there were a slew of different degenerative diseases for which they tested over the course of a year.  During that year, I stayed up late every single night googling, and googling, and googling.  What I read was not reassuring.  I lived in fear.  Finally Evelyn had an MRI at age two which revealed a brain malformation in her cerebellum.  They believed that this explained everything that she was experiencing, that she would always have low muscle tone, but that she would progress typically otherwise.

So I breathed easy for a while…we lived, we loved, we did our thing.  When Evelyn was almost three, she pretty much stopped talking and started having absence seizures constantly.  Enter a new reign of fear.  The neurologists and geneticists went into another tizzy and I think I was even more scared than I’d been the first time since so many signs pointed to a degenerative disease.

There is nothing that I can compare to worrying that your child may suffer and die.  Those words are so hard to type.  It is almost unbearable for me–for any parent–to consider these possibilities for my child.

So when the blood tests, the mris, the spinal tap, the halter monitors, and all of that other stuff were exhausted, we were left with autism to explain the regression.  And autism was a huge relief.

I embraced autism.  I wrapped my mind and heart around autism.  I accepted autism as part of Evie’s fate.  And it wasn’t devastating.  I moved forward with optimism.

Acceptance comes at different times.  Scott was slower to accept what autism might (likely will) mean for Evie.  Shortly after her diagnosis, I remember that he made a comment about her “catching up” developmentally.  Even though I gently push him towards reality, often, I don’t believe that he has fully accepted what autism means in our family.  I think it has to do with the fact that he didn’t spend time considering the horrible degenerative diseases that were on the table.  So he didn’t feel that sense of relief that washed over me when we heard, “autism.”

Last week, he mentioned that a coworker had asked him how severe Evelyn’s autism is.  He told him that Evelyn is high functioning.  I admit that I laughed because Evelyn doesn’t have speech, she isn’t toilet trained, she doesn’t have self care skills, etc.  She certainly wouldn’t be labeled high functioning by anyone else.  But it is touching, to me, that her daddy labels her as such–because she laughs, because she loves, because she has a sense of humor, because she has a temper, because we have a family language, because Evie “functions” just fine in his eyes.  And I love him for that.

Every time my husband reads one of my blog posts he cries because he is reminded of the fact that Evelyn’s delays and differences from a typically developping are truly profound.  Part of me wants him to embrace the probabilities, but another part of me sees the benefits of accepting nothing as an absolute and everything as a possibility.  Afterall, it makes me crazy that some of the people that work with Evelyn seem to have written off the possibility of her making gains with speach. Why should I feel the need to tell Scott that it is probable that Evelyn will never live alone?

My acceptance is different than Scott’s.  I don’t know which–if either is better.  I take life day by day.  I don’t plan what Evelyn will or will not be able to do.  I’m happy with any fate where my daughter is happy and healthy.  Scott doesn’t have higher hopes for Evelyn as what could be considered a higher aspiration than health and happiness?  But he definitely feels like Evelyn will make more significant developmental progress than I think is likely.

Where do you strike that balance between not allowing our hypotheses turn into limitations and dealing with things realistically?  Because both are essential.

Either way, both Scott and I accept that this isn’t what we expected or planned.  We are both surprised that it is, actually, far better than what we expected.  And while we might disagree about how things are likely to pan out in terms of our future as a family, we agree that health and happiness are our only objectives.  And I think we both have learned that happiness doesn’t live in our expectations for our family–but in our family itself.

destination: happiness

Thank you so much for the kind messages and comments about my first blog post…well the first one that I shared.  It is so uplifting to know that people actually took the time to read it–took the time to give thought to my words.

I’ve always been a pretty passionate person.  But my passion–the kind where you throw yourself into actually DOING something has always been pretty fleeting.  I would impulsively jump wholeheartedly into whatever.  Then I would see something shiny and get distracted.  I was usually motivated by anger–at the government, at an unethical company, or whatever.  But anger isn’t enough to fuel me in a sustainable way.  When it comes to advocating for my children, I am not fueled by anger.  I am fueled by love.  I am fueled by the burning need for my daughters to live in a beautiful world.

I still get pissed off when someone or something messes with that beauty.  But I am usually able to channel that anger in a more positive way.  Because I realize that my anger also pollutes the beauty.  Anger clouds my vision.  I see so much clearly now.  I know that every moment spent being angry is a moment not spent with my children or for my children.

My girls have given me so many gifts.  And I know it sounds cliche…but I’ve learned so much more than just parenting.  I’ve become a better human being.  Through them, I have been connected with  really lovely new  people.  My admiration for these people has lead to me examining the kind of person I am, and the kind of person I strive to be.  I’ve also been able to connect, in a different and more positive way, to people that I’ve known throughout my life.  These connections are all beautiful and they make my own world such a lovely place to live.

I think that prior to having children, I was really hard on people.  I was judgmental and arrogant.  Don’t get me wrong, I still fight to suppress the judging monster that rears its ugly head more often than I’d like.  But for the most part, I am much more willing to give people a break or the benefit of the doubt.  I find myself looking for the good in people and being more understanding of faults.  I think this has to do with the fact that I feel like my own (copious) faults and mistakes are magnified by the giant looking glass of parenthood.  There is more than enough for me to judge in my own backyard and people cut me a break.  They tell me I am good when I feel bad.  They tell me that my insecurities, my flaws as a parent, my flaws as a human are okay.  They forgive me and they accept me.  That is beautiful.  And I want my daughters to learn from and be a part of THAT humanity.

I’m happier than I have ever been in my entire life.  I live in a wonderful world filled with really kind people.  I’m still getting used to feeling this way.  It feels extraordinary to write words that I would have rolled my eyes at not so very long ago.  Isn’t it strange that I am somewhat uncomfortable with real, true, deep down in the pit of my soul happiness?  I don’t remember exactly how I got to this beautiful place but I know I wouldn’t be here without my children.  I know that love propelled me here.  I know that I wish I had a map to send to those that can’t find this place-for the better part of my life I didn’t even know that this place existed.  I know that I want my children to live here with me always and it is my responsibility to teach them how to live here.

fat thursday

by now, i’ve lost my rose colored glasses when it comes to doctors.  i know they can’t fix everything.  i know they don’t know everything.  and i sure as hell know they don’t dictate the choices that i will make for my family.  the good ones know these things as well.  the bad ones don’t and try to exercise the authority that they think the initials after their names gives them.  um no.

so little chunkadunk, maxine. we took her to the geneticist today.  said geneticist was already on my crap list for not having gotten back to me for almost six weeks after she said she would.  separate issue, regarding evelyn.  perhaps this geneticist did not appreciate the fact that i complained to evelyn’s medical social worker about her utter unresponsiveness.  but i digress.

maxine had an appointment to rule out overgrowth disorders today.  i assure you that i was not at the geneticist to seek advice about infant breastfeeding or infant nutrition.  she ruled out the potential genetic issue for which i am majorly relieved; although, part of me wondered if she hadn’t ruled that out before she even saw us.  the questions did not center around genetics.  in fact, they were almost entirely about maxine’s feeding schedules.  i, certainly, understand that these questions had a very legitimate place in our consultation. however, some attention should have been given to her actual field of expertise.  GENETICS.

she, apparently, wanted to demonstrate how very little she knows about the subjects on which she preached.  having, obviously paid no attention to my answers, she proceeded to tell me that my exclusively breastfed child was obese.  her answer?  wean the seven month old baby and start her on solids instead.  anyone that knows anything about breastfeeding, this is like telling an overweight adult to replace salads with cheesecake to lose weight.  and wean a seven month old?   credibility lost.

how dare i argue with a doctor, right?  that’s what she thought too.  mothers that aren’t doctors cannot be educated and well informed. certainly, they shouldn’t be so brazen as to defy a god doctor with a differing opinion.  oddly, the doctor could not back up her opinions with evidence and the mama could. how about that?  but that mattered…NOT.  i should bow to her alleged anecdotal evidence.  sorry to say, doc, “because i said so” stopped working on me about 25 years ago.

as much as i enjoy being borderline accused of abusing my child by breastfeeding on demand as my instinct and solid medical evidence indicate i should, i’m taking the medical records for both of my children and moving them to dartmouth.  dartmouth.  where i hope that the doctors will either have a clue about breastfeeding or be smart enough to shut it.

after all this, i was so frustrated that i cried.    as mamas, we are judged, questioned, and criticized for following our instincts and nurturing our children in a way that feels right.  it is no wonder that women have trouble establishing and maintaining a successful breastfeeding relationship in this country.  i was so thankful to have a la leche league leader as a friend to call.  it is so lovely to be lifted up by a fellow mama…as only another mama, fighting the good fight, can.

baby love

maxine.  i’ve been feeling guilty for not having the words to blog how your arrival touched my life.  i realize that i don’t have them yet because it takes a long time to process something so profoundly wonderful.  they will come, but it will take time for me to wrap my brain around my heart was instantly swollen with love for you.

you are 7 months old.  your smile.  it disarms me.  i forget myself even after all these months.

you want to be close to mama always.  i know it won’t always be this way and i will miss you when you start to explore your world without me.  but right now i can hold you close.

you love to nurse.  and i love to look down at you in hopes that you will take a moment to pop off and flash me a milky smile as you do sometimes.

everything feels so right when i bury my lips in your delicious cheeks.

you’re a silly baby.  so happy.  i want to keep you this way, as you are right now, always.  but i don’t want to miss out on any of your tomorrows either.

know that i love you with my entire soul.  when i look at you my heart giggles and i feel love surge through my veins as if a damn burst.  and keeps on bursting.  those are my love explosions for you, my little bubble.

the beginning and before that

i was born on June 29, 2006.  i was alive before that but i don’t really remember myself.  so this life, the one i’m living right now, started when my daughter evelyn was placed in my arms.  it started when she latched onto my breast and began to suck–as if to suck my old life out and replenish it with something new.  something much, much better.

what happened before my birth is peripherally important, i suppose.  some might object to me defining myself only as a mama.   but that’s the truth.  my beautiful truth.  every moment of my past life was a moment spent waiting for my children.  i mistook my reckless restlessness for something else.  i didn’t know i was waiting for my life to begin.

when i was born i felt the instant sting of naked vulnerability as i held my tiny reason for living tight.  this could all be taken from me and i would have nothing.  i would be nothing.  i was, i am only a mama.  almost as terrifying, i could be taken and who would protect my little creature?

she could, she would destroy me.  it sounds awful.  but slowly the sharp angles of my raw emotion began to soften as i allowed myself to feel the joyful love that was propelling my fear.  the love.  it plunged deep and penetrated my soul.  it ran parallel…and perpendicular to the terror.  and i knew that these emotions would  live in conflicted harmony for the rest of my life.

as i hungrily drank in every inch of my child, i began to experience the love explosions.  love explosions.  the fluttery, shivery, tingly feeling that i get when there is so much love that it clogs the veins of my essence.  and then, all at once, it gushes forward and overwhelms me and shakes me to my core.  love explosions.