Being Joyful

Twelve years ago, when my youngest daughter was an infant, she literally had eleven appointments a week, EVERY week, for two years.  Physical, Occupational, Speech, and Cognitive therapies, as well as vision services.  Because my baby was born a little different, as we all are in our own ways

Out of those eleven appointments a week, only two of them were conducted in our home.   All the other appointments, were down at the childrens' hospital, on the therapy ward they had at that time... with all the other special needs kids and parents.  Naturally, we made friends, got to know the other families.  My two girls spent so much time there, it never dawned on them that anyone was 'different'.  Even my eldest who was eight years old at the time we first started going, didn't bat an eyelash at a little friend who was born with her arms on 'backwards', with knees and elbows and ankles that didn't bend.  Many kids unable to walk, talk, unable to move at all.  But kids are kids... they readily accepted each other.  While my youngest was in therapy, my eldest would lay on the mats with kids who had NO movement.. none at ALL.. and she'd sing and chatter and read with them, and I would see their smiling faces and hear their laughter..  kids are kids.. it really was a beautiful thing. 

Dealing with doctors and therapists.... that was a hard time for me then.  My eldest who had just turned 8 years old had just gotten diagnosed with ADHD and ODD... and now I had just had this little year old baby girl too... and she was born legally blind, the myelin in her brain not fully developed, and autistic...  and for me, it was a lot.  I felt overwhelmed.  It was a lot to take in.   I wondered if I was being punished by God.  I wondered if I'd done something when I was pregnant to cause it.  Because, surely, this was my fault?  It had to be.  I cried a lot.  I felt pulled in a hundred directions.  Depression and anxiety were a daily thing for me.. but I kept going, because I had to.. I had no choice.  My girls needed their Momma.  Dinner still had to be cooked, the laundry washed, the dog walked and fed, and homework completed.  I struggled to find joy... it seemed to be hidden away from me.  And it felt permanent.

Looking around on the therapy floor... sometimes it was hard to not cry.   Severe deformities, diseases, illnesses, syndromes that I was not used to seeing...   I would try to smile...act normal... and then later I'd sob my heart out all the way home after our appointments after my kids passed out in the backseat.  How on earth did their families manage?   After all of the "why me, Lord?"... I had an epiphany.  "Why NOT me?"  Seeing the other kids who were severely impaired, or may not even live to see adulthood, made me realize how totally blessed I really was/am. God had given me two very precious gifts... my daughters.  And they are perfectly imperfect.  Exactly the way they are.   Two of the best reasons in the world to be joyful. 

My girls are now ages nineteen and twelve.  Last night I took my youngest to swim training for Special Olympics.  She still has very poor muscle tone, and is a slow, awkward swimmer.  Her legs spread apart instead of keeping them together, and she flails around as she tries to swim.  But she DOES swim!!  With a big smile on her face, she eagerly jumps into the water.   She may not be the fastest, but like her big sister, my girl is part mermaid... she loves jumping in the deep end, having fun, and then laying back to float... smiling up towards Heaven as she relaxes, enjoying the feeling of floating. And she is completely joyful in that moment.  

The Special Olympics is a God-send for us.  I absolutely LOVE that my daughter has friends who accept her, and she can play sports now... sports that she couldn't play before on a 'typical' team.  She isn't the 'odd kid out' anymore.  She is a "pea in a pod" with her team mates.  All that matters here is doing your best, and being brave enough to try.  They are friends.  They are actually pretty competitive, and they really, truly accept each other.  The Special Olympic athletes inspire me...   The volunteers I am so grateful for. God is GOOD!!!

Quirks

I am not not 'awesome'.

I am not a great housekeeper.

I am not the sharpest knife in the drawer.

I am not Mother of the Year.

I am not currently able to thread a sewing machine, let alone sew.

I am not crafty, and have to reply on kits, youtube, & crafty friends to do anything.

I am not patient.

I am not physically fit.

I am not tall.

I am not tech-savvy.

I am fat.

I am a bit of a Princess.

I am a fallen Southern Belle, who wishes I was a better one.. (not so fallen).

I am a good Southern cook, and I love feeding people.

I am blessed with a heavy Southern accent.
I am addicted to sweet iced tea.

I am careful of others' feelings.

I am tactful, and believe in good manners.

I am disgusted by profanity, and loud, ill-mannered people.

I am a great believer in modesty.

I am a tad obsessive.

I have phobias about shopping malls, bridges, and elevators.

I have a deep rooted fear about "losing control" in public.

I am sometimes short tempered and impatient.

I am clumsy, and have zero balance.

I am easily amused, too talkative, too friendly, and too easily hurt/wounded.

I am a Daddy's Girl.

I am devoted to my husband...

And..
I love my family completely.

I am guilty of taking things personally, taking them to heart, and unable to forget them.

I am the owner of a perpetually ill/painful stomach.

I am often suffering from depression or anxiety.

I am guilty of not wanting to talk to anyone or even step foot out-of-doors when I'm depressed.

I am often socially awkward.

I am a book nerd, a U2topian, and a Whovian.

I am the object of ridicule to a lot of people because most things I do are outside "the norm".

I am impressed by good writing, and admire the vision of artists in their work.

I am a collector of whimsical artsy things that catch my eye.

I am fond of plants, though I am terrible at growing them.

I like collecting pretty rocks and shells.

I love candles, potpourri, scented oils and incense, and always have some burning.

I am often sad, feel misunderstood, and wonder why I am even here.

I am very devout in my love for God, even though I know I totally suck and am never going to measure up.

I am far more forgiving of others than I am of myself.

I am in need of a good therapist.  Again.  

I am never going to stop messing things up, even though I don't mean to.

I am never going to be Super Mom. 

I am fiercely protective of my children.

I am loyal, empathetic, trusting, ....and fearful.

I am never going to get things right.  

I am my own worst critic.

I dream of living anonymously, miles away from anyone else.

I dream of having my own secret garden to get lost in.

I dream of having more babies, and having a huge family.  (impossible, but still)

I dream of being self-sufficient.

I dream of being strong, un-afraid, and capable.

I dream of the grandchildren that hopefully the Lord will bless me with one day.

Purpose to Please God... Not Others

Yesterday I blogged about my curse.   The curse of being a tender-hearted, sensitive person who "needs to get a grip" and "cries over everything".  I have thought about it... and I know God made me a softie for a reason.  I don't know what His reason was/is.  But if it pleases Him, who am I to argue?  But it sure does make things hard sometimes though!  I guess we all have our cross to bear.

A friend of mine stated yesterday on her facebook wall that "everything she does is 'wrong'".   I am sorry that someone made her feel that way.  She's an awesome person, and she does not deserve that.  

I am certain it was more than one person who hurt her.  Facebook, I swear, is one great big drama-fest.   Many times I have considered just deleting my account and forgetting about it.  I get tired of posting things (that I think is just something innocent) and that makes 'certain (obviously very bored) people' think that this is a great reason to argue with or attack me..publicly of course... or even worse, using what I post to make fun of me and spread their ugly embellished comments to others... all behind my back.  Again.   There are certain people in our lives that any of us SHOULD be able to trust, well... some of them you just CAN'T trust and probably never will.  That sounds bad but that is the truth.   And let's face it.  There are some who really, really think that the world revolves around them, so unless they are discussing how awesome they 'think' that they are, then they'd just as soon not even bother to converse at all.  Which, I have to tell you, would be perfectly fine with me.   So yeah... I don't post a lot any more.. and nothing personal if I can help it.   I'd rather just stay in my 'bubble'. :(

It stinks to feel like you're constantly disappointing people for not being a certain way.  I try and remember that as long as I am striving to please God, and that I am being the best wife and mom I can be, than that is ALL that matters.  But you know, sometimes it's hard when other people think you're screwed up as Hogan's Goat.   *laughs*  I guess it wouldn't be so hard if I weren't such a people pleaser to go with everything else.   Too friendly.  Too trusting.  Too easily fooled.  Too Sensitive...  *sighs*.... 

Sensitive and screwed up.  That's me.  But God loves me anyway.  *big grin*  

I Am Cursed

I am cursed.

My curse, I have read, is fairly common.  I don't have any idea where they get their information from.  But in my little piece of the world, anyone else who shares my curse seems to be fairly well hidden.

My curse is impossible to hide.  It shows itself anywhere, any time, and to any one.  Without regard.  The curse, is being too sensitive and tenderhearted.  And I HATE it.

This curse made my life a complete hell in school until the day I graduated.  Others saw it as a sign of weakness, and they gleefully did all they could to bring it out in me.  I learned to avoid the ones who did this... sticking to my friends who didn't seem to be phased at all by my sensitivities.  Maybe they thought I was just babyish, or dramatic, or that it was something I would outgrow at some point.  Who knows?  But I spent as much time hiding in the library before school as possible to avoid the wolves.  I found refuge in books when my friends were not around... though they didn't always do the trick if the book happened to be a British classic or some other sad tale.  Time has not changed the problem, or the intensity.

It really can happen anywhere.  Triggers are everywhere.  Hallmark commercials.  Publix commercials at Christmas time.  A military man coming home and his wife and kids running to hug him make me weep.   Horrible news stories, such as a child being murdered, and seeing the grieving family has me crying and depressed.   Certain songs on the radio I cannot bear to listen to, as they bring back memories of people I've lost.   When I went to go see "Lady and the Tramp" at the movie theatre, I cried when the one dog was hit by the wagon wheel.  In Doctor Who, when Rose ended up in the Parallel World and separated from The Doctor, I bawled my eyes out.

I have cried through hymns at Mass when all the other eyes in the house were dry.  I have wept over children I never had the joy of conceiving and carrying, and over baptisms of people I don't even know.  

I have cried watching my autistic daughter make a friend and seeing her being accepted.  I have cried when my eldest daughter was afraid to try something.  I have wept because I saw a sick woman burning with fever having to walk in the heat of summer to catch the bus to get to the doctor, and my boss wouldn't let me clock out and drive her.  (No, I didn't know her, but she was sick and needed help... and to this day (13 years later) I still think of her).  I should have just walked OUT of that job! :(

Being a wimp, stinks.  Getting caught mopping tears after watching a breaking news story is humiliating, especially when I STILL have certain people who feel it is necessary to roll their eyes at me in disdain, and tell me I need to "get a grip".   Now I end up crying more, because now on top of being sad at the news story, I feel like an idiot and I feel hurt and judged and angry that anyone is that INSensitive!!  But of course, I won't say anything... I never do.  I just take it... and end up depressed for a few days.  And feeling like a loser because of it all.

I don't have a switch where I can turn it on and off.  I don't LIKE being sensitive.  Hence the reason I feel it is a curse.  The world only accepts "feelings" if they are the "feel good" type or are perverted.   Crying because your heart is touched while watching the Special Olympics parade is not something anyone 'gets'.

I hate my curse.  But, I suppose the opposite would make me cold-hearted, and I certainly do NOT want that.  I'd settle for a happy medium.  But at this age, I guess I'm not going to "out grow" this. :(  

Fighting For Your Child with Special Needs

Yet another step today in the continuing saga of getting a "diagnosis" for my child.  Yes she is legally blind.  And yes she is "on the autism spectrum".  Yep.  It's ice cream.  But what flavor?  Who knows. :(  And Heaven forbid they just test the child or send them to a doctor who specializes in that.  Nope.  You have to play their game.  Can I even remotely say how much their stupid game just STINKS? 

I heard from the Center today for folks with autism and related disorders.. they want me to contact every single solitary doctor/therapist/service provider she has EVER seen and get a copy of any and all records they have... and then give a copy of those to the Center before they can recommend a blessed thing.  Way to jump through some hoops! Bureaucracy at its finest.

Since one of the things required (they have insisted on) is any and all "IEPs"  from each year in public school. For anyone unfamiliar with what an IEP is, allow me to explain.  An IEP is an Individualized Education Program which is from the persons with disabilities act, and each special needs child gets one.  They update them each year, (or more often if needed), and set new goals for the semester/year. The idea behind the IEP is to tailor-meet the child's specific needs, and to help out the teachers and service providers.  Sounds good, right?  It probably would, if they did it right.  Instead it's more like cows getting graded at the fair.  Except I think the cows get more attention and looked at better. :(  And then when the schools lose funding, and classes/services are taken... the kids suffer.

Okay. (back to where I was) I called the last public school she attended four years ago, and after talking to the nice lady in Guidance, (and I think I should get points because I managed to not cry on the phone), they have all her IEP stuff and have it sitting up front for me to pick up!  Yay, that was easy!  Though, I maintain that she has not had an IEP since she was in public school and I took her out 4 and a half years ago so she has not had an IEP in all this time.   

Why they need these old things (the IEP) is beyond me.  She is not the same child she was then.  Not to mention that the folks "in the system" are not exactly the finest in their field, (shall we say?).   Some of them don't know their elbow from their backside, and I was not confident in them then, and I am not more confident in them now.  If they were that great, why don't they have their own practice set up somewhere?  I am thinking these are the ones that barely scraped through.  

I also called and got emailed to me the release forms from the Children's Hospital here.  So I am on track.  I think.  I just hope that this gets us a little closer to getting a good diagnosis, and go from there.  One more stepping stone in this journey.  My hubby pointed out to me today that I asked for this journey.  Yes.  I did.  I could have left well enough alone.   Let my daughter continue to live and grow and play and learn as she is now.  But she is getting older, and God only knows what the future will hold, or how she will be.  I am not risking my baby.  I need to know that what we are doing now will help lay the groundwork for services for her if and when she needs them.  Because without a "real" diagnosis, there's nothing.  Being complacent... there's just no room for that right now.   This is not about me.  I need to do what's right for her.  If a mom does not stand up for her child, then who will?

I will say this.  If any mom out there has a question or concern in her heart about her child... even if it's a concern you've never even voiced out loud.  Follow your gut.  Don't wait, and then later regret it. 
 Your baby is worth it all.  We have to be strong and be a voice for our children.  Don't sit on your hands, and don't let anyone tell you that you're over reacting or that your "just being a mom" or any such foolishness.  You know your child better than anyone else.  Stand up.  Demand to be heard.  Fight for your child.  You won't regret it.

The Return to Hippie Food

After God only knows how long of straying back into the world of processed foods, today I have returned my family to the joys of natural food.  I don't know about anyone else, but I just FEEL better when I get away from the garbage.

Last night, in preparation for our "decent food" return, after I put a sack of pinto beans on to soak,  I decided to start us off with a big pot of oat groats.  I like making it... it's delicious, and healthy, and we will eat off of it for days until it's gone.  I loaded this pot up with 2 bananas, unsulphured blackstrap molasses, a mix of dried raisins and cranberries, and some freshly shelled pecans.   We ended up eating bowls of it for dinner, but I made so much we had plenty for today, and tomorrow too.   

The pinto beans I put in my crockpot this morning with plenty of water, and some seasoning.  I sliced and browned a link of lean smoked sausage, and added it to the pintos, then steamed a bowl of rice.  Pretty good stuff.  

Today I put aside my favorite sweet tea, and made fruit water.  If you've never made it, it's easy to do.  All you need is some fresh fruit, or some cucumber slices and some fresh mint, or whatever you like.  If you have absolutely nothing fresh, then you can use a little bottled fruit juice.  It's better than nothing.   I fill my glass half full with ice, then I squeezed the juice of a fresh orange into the glass.  I sliced a little of the orange into a few slices and added it to the glass, and topped it off with ice cold water.  I am NOT a water drinker.. but something about the little bit of a fruit taste and the visual appeal of the slices in there with the ice cubes is nice.  Now I've went from a plain blah old glass of water.. and now it is transformed into a glass of water wearing a prom dress! :)   Now it's something I WANT to drink, will actually enjoy, and have the added perk of some vitamin C. :)

Looking in my fridge, I have two eggplant I am going to need to cook, as soon as possible.  I have those, a few green tomatoes, and two heads of cabbage.  Not a blessed thing to make a salad out of.   I will have to get back out to the Farmers Market soon.  

A 5KFoam Fest With Mud and Awesome Kids

What a lazy Monday... lots to do, but just can't seem to find the energy.   I'm afraid I've 'dropped the ball' today on being Super Mom.  That seems to be happening a lot lately.   I am fairly sure the bulk of it has to do with my garbage diet and being overweight.  I need to get back into my "hippie food" and start moving more.  Anyway.

This past Saturday was awesome.  My youngest daughter Robyn, who is visually impaired and who is on the autism spectrum, was in her first ever 5K mud-run.  It's called "Foam Fest", and the idea was to have a 5K run with fun things to do along the way, involving getting either really, REALLY muddy, or really, REALLY foamy!   Lots of slip and slides, things to climb over, crawl through, and run and jump through... which left everyone wet, muddy, with foam in their hair and smiles on their faces!   All the proceeds went to benefit the Special Olympics, which my daughter is in.  The one downfall?  It was bitterly cold... the wind chill was 27'...  and with the humidity we have here, the cold cut right through you.  

Undaunted, my Robyn and her team-mates attended (except for one boy).  Each athlete had a chaperone, so there was plenty of help available if needed.  The race was not timed... it was all for fun!!  Hubby was her chaperone, and she was very happy to have her daddy do this 5K with her.   They completed the run in about an hour.  Though with everything ... we were there, in that COLD, about 4 hours. And it was worth every bit of it.  They had a blast!!

She is already planning to go again next year.  Maybe next year, I can do it with my husband and daughter, and it would be great if our eldest daughter did it too.. make it a family thing.  I would love that!!  She did awesome.. this same girl who HATES getting dirty, has zero balance, and is  perpetually afraid of falling, (and does fall, just crossing the room), did this 5K.. she was able to do 90% of it.. and the little bit she was unable to do, she did her BEST at it, and was completely fearless.  We are so very, very proud of her!!