2 for 1 specials

Seems I am breaking down inside piece by piece.

Last year for my birthday, I had my uterus removed.  The surgeon was offering a 2 for 1 special so I also had a large cyst taken care of that had developed on a gland in an area that I won't mention.  For a few months I felt amazing!  Wishing I had my uterus ripped out years ago.  Then the pain started in my ovary, and I am part of the less than 1% who have the cyst return!  SO, next week, I go back under the knife.  It's that time of year again and my surgeon is running the same special.  Two surgeries for the price of one.  I get to have one ovary removed and the glad that likes to develop the obtrusive cysts is getting removed all together!  That'll teach glands to mess with me!  Behave glands or I will rip you out!

Today I have all my pre-op appointments.  I am trying to be optimistic about the whole thing.  It's such a pain.  I have so many other things that I think I would rather deal with.  Teeth drilling for example.  And if I am going to choose a surgery... lets go with something more beneficial - like a tummy tuck or new boobs.  Apparently there was no way to slip either of those things into this surgery.  The Dr was only offering these two.

I know that "it'll be worth it", that "you'll feel so much better"... but that was the lil words of wisdom I was holding on to LAST time.  Today I think I may ask the surgeon if there are any other optional parts in my girl region that I don't really need, that she go ahead and take those out as well.  Just clean everything out - make it pretty and call it a day.

At least this surgery will only have me depending on others for a few days.  As soon as I am off the pain meds I can drive.  From the time I broke my shoulder, I know that I can go w/o pretty easily.  I have a pretty high pain threshold.  So MY plan is to be back in action by Thursday.  I still have to follow Dr. restrictions for lifting and 'activity' for 6 long grueling weeks.  But at least I can drive, the girls where they need to be.  Think Husband and I will have to plan an early anniversary trip.  ;-)

Alas, I am off to embrace the day of talking about things that make teenagers giggle. (who am I kidding, those words still make me giggle)  Getting poked, prodded, measured, and pretty much removing every ounce of conservative from my day.

Embrace your day lovelies, and if you think your day is odd, remember that mine is pretty awkward today as well.  Mwah!

FaceBook before bed?

Last night I had the most Bizarre dreams.  One of those dreams that felt so crazy real and yet strangely odd at the same time.  Now that I am alert and well into my 2nd cup of coffee, I am laughing because each element of my dream is from FB posts that I reviewed before going to sleep.  And possibly the amazing wine I had with dinner on the mini date I had with husband.

So there I was... I was living in my home town, but not with my mother (whew) and I was not married.  I was in a long distance relationship with this amazing man. (who fortunately is now my husband because then this dream would have been very inappropriate and wouldn't be blog worthy).  I was feeling a bit stressed because I had not seen him in almost two weeks since we last talked over FaceTime. (which was odd because email wasn't even a thing yet when we dated)  He was stationed somewhere stateside and I kept checking my phone to see if he had called.  It was exactly two weeks, and I was missing him.  For some reason though I didn't want to call him because I knew he was busy and maybe had decided I wasn't worth the effort for the long distance romance.  I tried to put it out of my head because I was trying to prepare for the production that our town was putting on at the local theatre.  I was singing an opera-ish song and had not a clue what the production was about or even the words to the song. (opera ya'll, seriously?) I was a nervous wreck.  This little woman kept telling me to sit so she could prepare my hair.  I was looking over the music and my phone rang.  The screen showed a picture of my yummy Airman, and I was thrilled.  As was talking to him, the little hair lady kept yelling that I needed to warm up my voice, so I had to sing my conversation to my man.  Needless to say, he was a little weirded out.

My friend from high school kept passing me in the hall.  She rode by on her bike and shouted "Bike riding 30 minutes 210 calories burned".  Then on a pogo stick "pogo riding 20 minutes 410 calories burned".  I missed my man terribly and was hanging on to his every word.  I loved the sound of his voice and I hated that our time to speak was so limited.  He said he was deploying and would be in town for a layover, (again crazy bc there is only a tiny airport in our hometown that the AF would never land a jet). He wouldn't have to much time to see me because he would only have 45 minutes from the time he landed until take off.  Apparently he was scheduled to land at the exact time my singing would be over. PERFECT!  I ended the call, and stepped out on the stage which was now an open arena in Italy!  I sang my heart out! It was so amazing, I surprised myself.  I then jumped on my high school friend's scooter and pressed the button that said 'scooter 20 minutes 2 calories burned'.  I arrived at the airport and there was a LONG line of people holding Chick-fil-a cups and a sign that read 45 minute wait from this point.  There were security everywhere.  Apparently my man is a big deal!  His parents arrived by limo and were escorted to the front of the line while Chariots of Fire played over the loud speakers.

As I neared the front of the line, my man was signing autographs (anyone who knows Husband will find that hilarious, he's not an attention seeker at all).  Our eyes met.  He smiled and waved and then the Air Force people dressed in heavily armored gear, told him it was time to go.  He stepped off the platform and walked up to me kissing me like a rock star.  His plane took off and I was alone on the runway with an autographed picture of my Airman.  I felt so sad and alone.  Wondering where this relationship was headed.  What I should do.  Wondering if he had swoons of fans all over the world.  I missed his touch, his smile, and his wowie wow wow kiss.

Then I woke up and who's in front of me??  In my bed??  HUSBAND!!  I was married to this amazing man and I get to be a part of his world.  I laid there giggling, thinking back on my dream.  I couldn't get back to sleep.  Flashbacks of my dream and our relationship over the last 20+ years.  Almost 16 of those years as husband & wife.  We have had our highs & lows but they have only drawn us closer.  I couldn't imagine it any other way.  I am crazy about my man and no matter what the day holds, I know I have an amazing husband to turn to.

So... no more FaceBook before bed.  I am very proud of my Opera genius friend who did in fact recently perform in Italy.  My friend who posts all her activities and how many calories she has burned.  Many had chick-fil-a yesterday and posted about their wait times.  Husbands parents don't travel by limo, but I guess they are like royalty to me, and he IS my prince.  Chariots of Fire?  Obviously the Olympics, but we should all have our own theme music, don't you think?

I realize now that I don't have great pictures of him or us.  I spend all my picture taking time on our kids and nature.  Hmm.  This isn't a picture that either of us would delight in, mostly because the sun was crazy bright and blah blah blah, but it's the most current one I have.  :-)  Where did all the gray hair come from?  Sheesh.

Strength

Sometimes - there is only song.

deep breath

breathe.

Just trying to breathe is some days is to much. The effort to accomplish anything else seems wasted. Regardless of what is said or done, it will be wrong. Hopelessness is all that is felt. No. That's not true. Numbness. Completely numb. Either there is no fight left, or the realization that there is just no point in the fight. Even those that are closest feel like strangers. Those that understand and support begin vanishing. Vanishing from their lack of understanding or lack of caring, leaving emptiness and numbness.

Numbness and loneliness. At the same time they are both the most painful and damaging emotions that can be felt. The thoughts that creep into the mind are irrational, and yet so freeing.

Freedom. To break free from this being that has taken over - to revert back to the life that once was, before. Before seems so long ago. Nothing is left now but a carcass of what once was. A body that once housed laughter, joy, fun, and love.

Love. The very thing that has brought such brokenness. Loving too much. So much that it has caused the heart to break and the mind to isolate. Spiraling in a thought process battling what is logical against impulse.

Impulse. The energy that arrises to run. To break away. It all seems so easy - but then the logic kicks in. The love surfaces and then the mind engages. Reasoning to return, to stay, out of love. No matter how abusive and lonely. Love. Love that can never be measured. Love that makes logicial choices overpower impulse, despite of the loneliness. The isolation. The numbness.

Feeling Overwhelmed??

The whole parenting thing can be rather overwhelming at times. Parenting a neurotypical child has it's own challenges. D1 is 11 and it running head strong into puberty. The Horror-mones are full throttle and are enough to summon Dr. Jeckle and Mr. Hyde. One minute she is all about her momma and the next - she could burry me alive with her looks of disgust at knowing me.

The last few weeks with D2 have been extremely overwhelming. Her therapist sent me a message asking how I was doing because I looked exhausted. Really? Ya Think? Exhausted...yes, overwhelmed...yes. I think mostly defeated. I have been feeling incredibly lost, low, and empty. I feel like I am running out of options and nothing seems to be working. Basically like a total FAIL. During a rather intense meltdown with D2 on Tuesday evening, I sat down and emailed her therapist a frank email saying here we are - what now? He responded the following evening with an appointment time.

On my way I had visions of Child Services waiting to take me away. Or maybe the men in white coats. Maybe he would have a large fruity cocktail & a personal masseuse waiting for me in a back room? Okay he knows that would be a bad idea - because I may lock the door and never come out.

I poured out most of my frustrations. The ones surrounding D2. He listened, understood, and supported. He was very encouraging to my methods. Told me about some research that he was working on for our benefit. Assured me that although I don't see a huge golden nugget of validating success - I am a good mom. That Husband and I were doing a great job with D2 and the different, unpredictable, circumstances that we were presented with on a daily basis.

Did you know that 85% of parents with Special Needs children divorce? That's a lot. I can understand why & how. It's so very taxing on a marriage. Not for reasons you might think. I find it interesting that this is a topic that is not talked about on may of the forums and books that I read. It's almost the unspoken secret - that if we pretend that it isn't so - then it isn't so.

I married the most amazing man to walk into my life. He was the first to show me what true unconditional love was about. Having a child with Autism, has not broken us - it has made us stronger. Sure we struggle. But it's a struggle that is one of exhaustion. We each become frustrated seeing the other become frustrated. Some nights when things are so intense with D2, we often have nothing left for each other. We find ourselves numb. Distraught. We are so emotionally spent that we have nothing left for each other. Learning to turn our emotions off and on is a tough thing. If you detach yourself from the drama - you begin to feel cold - and that doesn't seem like good parenting. When things are tough and your heart is wounded - the last thing I want to do is throw on a smile for my husband. How can I be a good wife when I feel like a total fail as a mother and a woman?

Happiness is...

friendship.
friends that know you better than you know yourself.
friends that can listen to you and never judge.
friends that you can go without talking to for days and pick up where you left off.
friends that can answer the phone and know by your tone what you're really feeling.
friends that laugh with you before you even realize you should be laughing.
friends that let you blow things out of proportion and help you gain perspective.
friends that know how crazy you are about your man even when he's driving you crazy.
friends that call just so they don't have to clean their toilets in silence.
friends that cry with you - cause they just love you that much.
friends that are true enough to let you know when you are being unrealistic.
friends will laugh with you so much, your cheeks hurt - miles apart - over something simple.
friends can sit beside you - in silence - and enjoy just being together.
friends can make you feel like the world is yours in the lonely times.

friends come and go. Some go, leaving you wondering what ever happened. Some stick around forever leaving you humbled and wondering why.

Today, I am so very thankful for my friends. The pure Joy they bring to my day. The laughter they share. Making me a better person, just by being in my life.

Thank you friends. I love you.

Getting ripped off by nosebleeds

Autism is a tricky thing. You go through your day and don't think much about autism until something that makes no logical sense happens and you think "what in the world.." and then you do a head smack and remember - ah THAT's Autism.

Just yesterday D2 pointed out that her legs were becoming rather hairy. She has been asking for some time to shave. After all, her sister has been shaving her legs and so she should be able to shave as well, right?

So, we sat on the side of the tub, I explained about getting her legs wet and then lathering up with the cream. Who would have thought about the sensory implications of shaving? Not me. Not at first. I was quickly reminded as her voice quivered and she began to fidget. Inside I was thinking wow, this is just with the cream, this is only going to get worse.

Then came the razor. She did okay - after we got over the 'tickle', no the 'pain', no guess it isn't pain, it's 'pressure'.

It was the longest I have ever labored over shaving. EVER! I think it could have been transformed into a short story - "Shaving with Autism". I can not wait till we start shaving armpits. (much sarcasm)

After our shaving fun, this conversation ennsued, reminding me once again that D2 was a child with autism.

D2: "did the people that worked in the World Trade Center get nosebleeds often?"

me: "I don't understand what your getting to"

D2: "Well, the high seats in the football stadium are called 'nose bleed seats' cause they are so high. The World Trade Center was even higher...so did those people get nose bleeds?"

me: "'Nose bleed seats' are only an expression - you don't actually GET a nose bleed"

D2: "I HATE expressions!!".....(thoughtful looks) "SO, just because you sit in a 'nosebleed' section, that doesn't mean you get a nosebleed?"

me: "no, not a guarantee"

D2: "What a ripoff!!!"

After watching clips from the Temple Grandin movie, D2 has started a journal. "me and autism" She wrote later that night, "Apparently when you sit in the nosebleed section, you don't really get a nosebleed. I feel kind of ripped of about this."

Ah the life of being literal.

Fresh Starts

The move is over -
Wisteria Lane is a thing of the past.

A new chapter has begun and things are looking fresh and promising.  D1 will be attending an AMAZING middle school next year.  She is looking forward to playing cello and taking on the world.  I worry a little about the change in schools.  I've already seen with D2 switching schools that there are things that maybe were not covered?  Things D2 was reviewing for the end of year wrap up - are things D1 didn't have until 5th grade.  The work load will be much different.  I know she can handle it - the trick is assuring her that SHE can handle all that comes her way.  D2 finished up with a BANG!  After 3 weeks her new school asked us about reevaluating her eligibility for an IEP.  They felt the 504 she had was a joke.  The last week of school we signed an IEP and will plan to revisit after the first marking term to adjust for more specific areas such as writing.  It was a bitter sweet meeting.  Glad that they are so proactive and ready to help.  Surreal that after 2 years of banging heads with the old school and practically telling them what they needed to do - have this school say the exact thing I have been saying.  They hardly know D2 and know just what she needs.  I am excited as she starts next year with a plan in place.  I think it will be a tough adjustment, but well worth it in the end.  

We are practically done getting settled in to our new home.  We did quite a bit of downsizing.  Moving for the 8th time in 15 years has caused us to accumulate a lot of stuuuuuff.  When you are only at a place for a few years, you unpack what you need, and then store the rest.  The packers come along and throw it all together and you move again.  Not fully unpacking or taking inventory of all you have.  When you move yourself - after being settled for 3 years. wow.  The trash truck was well utilized and never was I so thankful for trash pick up 2x a week!  The things that are left now, junk.  Stuff you pick up in your hand, look around, and put it back in  the box b/c you have NO idea what you are supposed to do.  You know you need to keep it - maybe - but where?  There are about 7 boxes collectively throughout the house, that have not required our immediate attention.  My plan TODAY is to relocate those boxes to the storage room, and we'll take it from there, but at least the rest of the house will be settled and we can resume 'normal'.    

Fresh starts usually start 1 January.  For us - fresh starts start now.  We will spend the summer being a family.  Lounging by the pool.  Visiting family.  A few camps.  Relaxing and looking forward to all things new that are ahead of us.

We still will have the day to day things that disrupt our lil utopia, but hopefully we will be able to cross those bridges one step at a time.  Autism is ever present and I am learning how to cope, how to dismiss judgement, how to stop apologizing, and how to love in a different light.  At times I am unsure which is worse, Autism or tweenager horror-mones.  My amazing Husband has bought me some cool gadgets that will allow me to better have availability to write more.  There is my therapy.  ;-)

The screams of poo

Being a parent of a special needs child carries many emotions.  Many I have shared already - but as I sit her this afternoon listening to the screams.... I need to feel less alone.

At this moment I am listening to the screams of "Mommmmy!!!"  D2 has not pooped in about a week now.  It's the same routine.  We go day to day - then a few days - then a week - and we have even made it past 2 weeks before.  It's something that you just can't make your child do.  You can't make them poop.  You can tell them to poop.  You can confine them to the potty.  You can bribe, barter and punish all you want to - but at the end of the day you can not crawl in their body and make them poop.  No amount of broccoli or Miralax can make her go.

Whoosh - there goes the toilet paper flying off the wall and down the hall.

Pleads & promises between the cries.  Let me get up - I'll promise to come back when I have to go - you're so mean - it's going to hurt - I don't want to do this - I hate myself - I promise to come back in 10 minutes - please stop making me do this - why can't you trust me - I hate you - I hate that I do this to myself - why do I have to be this way?... 

Ear piercing screams.
my head is pounding and I just want to hold her and cry with her.  I have to be strong - I have to disconnect emotionally and be firm. ANY emotion I show will cause her to react more.

When you poop, you can get up...

It seems so cruel.

Don't you love me mommy???  Why are you doing this???

deep breath

because I love you - and I don't want you to die

I used to spend all this time in the bathroom with her.  I can no longer do that.  I look at her and she yells to stop looking at her.  Stop talking to me, she reaches for my hand, don't touch me... so I become trapped in a small room unable to look, talk, or touch my screaming, hurting child.

Now I sit outside & pray.  Except for today.  Today I blog.

Silence.  A calm voice just said, Mommy - could you please turn on the fan?

Success.

I don't know how such a small lil girl can pack in so much poo.

Next will be the affection and the apologies.  The mommy, I never want to wait that long again.  Mommy help me remember to go more often.  Mommy, when you see me start to do the things that help me hold my poop, tell me to go. 


It's the same thing - the same routine - every time.  It's the loop and the life of my child with Autism.  Just one of the many things that I juggle.

I keep thinking of the song Blessings, by Laura Story.  What if my purpose in life was just this?  To keep my daughters safe.  To show them love through every painful circumstance.  Of course you may say, that's the job of a mother - but these were just not the circumstances that I, nor any parent of a special needs child - every dreamed we'd be faced with.

The cries are over.  The screams have been replaced with giggles and the bathroom fan.  In a few minutes, my arms will be filled with snuggles and kisses.  These last 30 minutes will have to be forgotten and I will brace myself with prayer for the next unexpected moment.  For uncertainty is my constant.

What if Blessings do come from Raindrops?

I am one blessed momma.

Someone somewhere has it much worse... or do they?

Many times when we are faced with a difficult situation or life circumstance, we ‘comfort’ ourselves by thinking that the situation could be worse, or at least you don’t have it as bad as the other guy.  But does that mean our circumstances are any less tragic, or frustrating, or consuming for us?

Fairly recently I took a friend for her chemo treatment and was in awe of the attitude that  she and the other cancer patients had about their cancer.  They weren’t depressed, angry, or even rude.  For my friend, she was choosing to let it be her testimony.  She wasn’t angry at the Dr who just a year prior had removed her ovaries and gave her a clean bill of health.  She knew that a year ago - she could not have handled cancer with all she had going on in her life.  She knew that THIS was the time that God intended for her to deal with cancer.  Sure she had moments of sadness, and feeling overwhelmed, but it didn’t consume her.  

During our Chemo Date, our talk led to D2 and her Aspergers, ADHD, and Anxiety - how all those things combined were presenting themselves.  We talked about the struggles she was having at school, therapy, and at home.  My struggles knowing how to parent two completely different children.  I interrupted the conversation, saying that I had no right to feel stressed by the situation when she was dealing with cancer.  Who am I to complain, after all “it could be worse”, right?

I have another friend who has a special needs daughter, who requires her assistance in everything.  Dressing, communication, and many other basic tasks. She is one of the most inspiring women I know.  Her Facebook posts are always so positive, and when I see or talk with her - she has it together.  I know that she has her moments, that she has her struggles, but she has it in perspective and sees her daily blessings.  Her child is physically and mentally disabled.  Who am I to complain, after all “it could be worse”, right?

My daughter is growing more symptomatic on the Autism Spectrum.  Her diagnosis is Aspergers, but I am understanding why the experts are ready to completely included Asperger’s Disorder as Autism Spectrum Disorder.  Yes - she is verbal, affectionate on her terms, and super smart, but there is a side to her that many don’t see.  In fact when  most people hear about her diagnosis, they say “really. I didn’t see that in her”.  However, they don’t live with her to see that she struggles with day to day tasks.  The ADHD helps so that thoughts don’t stick long in her mind and the tantrums pass fairly quickly with distraction.  It hurts in that she can’t focus, which aggravates her when she is trying so hard to ‘make something right’ such as getting her place setting just so.  Then there is the Anxiety that completes this perfect storm.  The triggered ‘the sky is falling’ response when something so simple becomes so incredibly out of control.  Together these things equal a day to day life that just isn’t logical or consistent in any way.  Inconsistency IS our only constant.  

I heard about a mom whose daughter required meds 6x a day, who had to wear a vest 2x a day to help with breathing and digestion and my first thought was at least she knows what to expect.  I felt horrible for thinking that.  Until my inspiring friend told me that she thinks about me and is thankful that she at least knows what to expect with her special daughter.  That she didn’t know if she could deal with the sudden changes that I face with D2.  

I suddenly felt validated.  I felt like there was someone who understood that being a special needs parent was somewhat similar across the board.  

My friend who is treating her cancer... she told me that we all have some issue, some “cancer” that weighs on our heart.  Before you send me hate mail, I am in no way calling my daughter a cancer.  It’s a metaphor - let me use it here because my daughter can’t understand metaphors, idioms, or any expressions - so this blog is all I have for those.  Since cancer is such a bad word for some, I’ll use the word ... flower.  

My Chemo friend, said - her flower is hers, it’s her situation that God planted for her right in this moment.  Someone else’s flower is the divorce that they are handling. My flower is having a special needs daughter.  I was chosen for this flower- I was chosen for her.  Nothing will increase your faith like having a flower.  My flower isn’t cancer, a divorce, a terminally ill spouse.  My flower is a daughter who can loose her composure over mustard.  Who can fall apart by being allowed to pick out ice cream.  Who chooses not to poop for 3-10 days.  A child who can be laughing one moment and wishing she could die the next.  My daughter is loving and compassionate and cares so deeply for others.  But my flower knows that there are no others in her immediate garden that ‘get’ her.  That she is a different flower, and because of that.. my flower is lonely and scared.  As much as I try to help, through therapies, and medications, and schools... My daughter will always be my flower.  

My lesson to myself, is that instead of judging others flowers, thinking that they have worse growing conditions than I... I need to give myself some credit.  My flower may not be any different after all.  Not worse, not better, just mine.  Instead of stacking the growing conditions of those I meet... I need to embrace the common thread - that we all need support while growing our flowers.  We all need someone to say “this flower pot really stinks! I know I was made for this flower at this moment, but right now I don’t like how it’s going”.  

Someone, somewhere just has a different flower. 

Kari Jobe - Revelation Song lyrics

I have been wanting to blog for many weeks now.

My heart is conflicted and the words are amuck.

Music has been an amazing outlet for me so I thought I would start with sharing the music that has been pouring from my heart first. I know the words will come. For now... I'll let someone else's words speak for me.

Sometimes music is better than words.