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.

A friend

We all have friends.  Many different types of friends.  Friends in different circles of our lives.  Friends that we simply smile and touch in with, and friends that we can pour our deepest thoughts and fears out with.  Friends come and go.  Some start out as friends, but then you learn that they were just friends for a season. I recently had a friend that I thought would be a real friend.  We shared some great times.  Then everything came to an end.  I was confused, and felt betrayed from things that I had trusted to our friendship.

This started me to reevaluate relationships I have in my life.  It helped me to see those in my life that are true.  The friends that truly matter - and whose friendships are unconditional.  The friends who know what is important in life.  Who understand mental health days.  That no matter how mad you are at your husband - you love him like crazy!  Who can swap stories about bad parenting.  Who's imperfections are exactly what makes them perfect!

Though friendships that I have invested in have come to a close, I can smile and appreciate those that I know will never close, those that are full of heart when it really matters.

Today though, I lost one of those rare and amazing friends.  Today my heart breaks for the twin brother and sister that will wake up without a mother.  For the husband who had such a deep love for his wife that now finds himself a single dad.  Today the world lost an amazing woman who had an infectious optimism, that made her someone you wanted to be around.  Today my friend Liz died unexectedly from a pulmonary embolism.  Liz knew what it meant to live.  She did everything 100% and was the most genuine person I knew.  She loved with her whole heart.

Every memory I have of Liz, involves a smile.  Even times when tears were shed, they always turned to smiles.  From the simple times of drinking coffee after watching our girls do the "ho down throw down" in the school parking lot, to the long meetings planning events for the base.  We solved all of the Air Force's problems while drinking coffee at Khul Beans and became expert wine samplers at the Bazaar.  Lunches at Isola Bella and the most memorable Dinning In to wrap up great moments in Germany.

Everyone should be so lucky to have a "Liz" in their lives.  I know my life, and those who knew her have been blessed beyond what can be put into words.

My fellow Dudeldorfer.
Who always had a smile, a hug, or a story.
You have shown us how to love, how to care, how to laugh, and how to be the truest definition of a friend.
You have touched the lives of many - leaving memories that will last forever.
You have loved our children and shown us what it means to be an amazing mom.
May our lives be remembered as fondly as yours will.

I will miss you my friend.
Thank you for Loving!

Love renewed from a government email...

On a Friday morning in mid June, Husband received an email letting him know that since it had been a while since his last deployment, his name was being tossed around for one soon.  A long one. 365+ days to be exact.

He kept this information to himself through the weekend, as we had company and life was pretty much a series of tornados.  Or Nor-Tados as D2 calls them.  On Monday afternoon he told me about the notice and that USUALLY they notify you within the next 24 hours.  No notice was received with direction either way.  On Tuesday a notice was sent out seeking volunteers for a few assignments with a deadline of Thursday and non-volunteers would be told on Friday.  Again these dates came and went without a word.

Talk about a mixed bag of emotions.  Don't get me wrong here.  I am not one of those wives that thinks that marrying a military man will mean we get to live in one place all our lives, next to mom and dad, and we will never be apart.  Not kidding, I have met these wives.  In the almost 15 years we have been married, we have lived in 7 locations, 2 of which were out of country.  I have been happy to follow my man around, setting up house where ever and with whatever circumstances we had.  I was 5 months pregnant when I moved to Italy to an Italian base only to leave 2 years later with 2 babies.  I have always been happy to follow Husband, because I knew when I married him that he was a military man.

While this potential news of him being gone for over a year was sad, I knew we were not the only family making this sacrifice, that although we have had separations that we measured in months and not years, we survived those.  We are a military family and we can do anything for a year!

The biggest impact was that I realized just how much I take Husband for granted.  The day to day stuff.  The things that seemed so important - suddenly we not important at all.  The thing that seemed most important was simply TIME.  Our American lifestyle of activity leads us to a lifestyle of captivity.   While STUFF seems important, camps-clubs-sports-volunteering-parties, what we fail to prioritize is family.  Simple family time.

It was important that the girls have time with Daddy.  That Husband knew that I truly loved him with all my heart.  In those moments, we started dropping some commitments that were taking us away from each other.  We made plans to go places and do fun things as a family.  We started putting the four of us first.

I think the biggest change was me.  I had this renewed motivation to be certain that Husband knew without a doubt that I was thankful for him and all he does for our family.  I wanted to be sure that he looked forward to coming home every day.  That he knew that he was a priority.  Our conversations seemed to have more meaning to them.  Our times of just being in the same room reading became more precious.  Our relationship has grown deeper and refreshed all because of a government email reminding us that it could all be uprooted in a moment.

It's been over a month and just yesterday someone approached me and said sine Husband wasn't deploying he could come back to (an activity he prioritized as excess) this Thursday.  Person even emailed Husband reminding him.  The internal struggle began in me - was I being too selfish with Husband?  This activity didn't take THAT much time, and it took place during the week when the girls were getting into bed anyway... and then it happened.

ANOTHER email.

Uncle Sam sent Husband an email letting him know that his name was being tossed around for a 365 day deployment.  AGAIN.

Cattle prod to the booty.  Zowie!

Yes Husband, your weeknights are filled already.  For now the girls need their daddy and I need my man.  When the email comes that you will have to be away from us, then we will put on our big girl boots and let you go.  We will love you from afar, through tears because we're girls and we cry.  We will support you with all our hearts reminding you of the awesomeness you have waiting for you at home.  We will do those things because we are a military family and that's what we do!

Until then... Husband is busy.  His social calendar is carefully planned with family having first pick.  His children are growing aware of how blessed they are to have such a great daddy.  I am renewed and madly in love with my man.  Taking each day as a gift and being sure that no matter what the day brings, that he and I end it on a very happy note.  Making even the simple things special.  Doing all I know how, to be certain he knows he is loved and appreciated.

Don't wait to let your spouse know that you love them.  Don't take the days for granted.  You may not have the government looming with their emails, but life can change without any warning.  Does your spouse know that despite all the "grrr" in the day to day, that you love them?  Doesn't hurt to check.

I love you Husband!

Today I am the snake!!

Is your glass half full or is it half empty?

We are all familiar with the different perspectives that we can have about things in our lives.  Recently a friend of mine traveled to the city with friends and dented her van, got a ticket, lost a wallet, and had a child vomiting - all in one afternoon.  Many of us would just think - this day is NOT going well, and would have been completely derailed.  Not her.  She viewed those events as “hiccups”.  Really? Hiccups? 

Perspective.  

It’s all about perspective.  Well, that and whether or not you are a complete control freak like myself.  When things are going as I planned, or as I can manage - my glass is full.  When things start spinning out of control - my glass is not only empty - it’s shattered and I fall to my knees picking up shards of emotions trying to figure out which one I can use.  

Am I sad? hacked off? defeated? mad? emotionally constipated? Does that situation even matter? 

Perspective.

When your glass shatters - do you waste time on the crumbling emotions or to you simply reassess the situation? 

Depending on the situation - I believe that you should always just look where you are, and figure out what you can do from there.  I also believe that you are allowed to take a few moments and just feel stale.  Not long though, just enough to get a new set of big girl panties on and freshen up your attitude.  God created all those emotions, so the emotions are not the problem.  It’s what you choose to DO with those emotions that can be dangerous.  

My very talented friend took this picture.  Apparently her home has turned into a NatGeo reality show with mice, snakes, and frogs.  I myself would not handle things with the calmness she does.  I’d be shooting me some rodents. (yes, I’m from the country)

Not the point, but take a look at this picture.  

Glass half full or half empty?

Depends if you’re the frog or the snake

Perspective.

Yesterday I was the frog.  No matter where I hopped, someone somewhere was ready to chomp my head off.  I felt all that I could do was lay there and flail about while I was being devoured.  So, I had my day and today I am choosing to be the snake.  Taking todays frogs head on.  My kids are thrilled about this already! and no - they are not the frogs.

Who will you be today?

PS: the Snake is obviously the control freak here. He went for the head, leaving him in complete control - the frog, bless his heart, doesn’t stand a chance.

PPS: the frog was indeed injured in this battle.  the photographer was not.

No more pencils No more books!!!!

Today is the day.
Screams will be heard across the world at 11:45 EST when my children get off the bus.  The loudest screams will be mine.  I am so thrilled to have my girls home for a few weeks.  Yes, you read that right.  I am thrilled to have them home.

This year has been a fast one, but yet a tough one.

I cling to hopes of a better year for D2 next year.  The teacher that she is supposed to have should be perfect.  We'll see, but I have hope. Yes I know, last September I also had that same hope, but that was when we didn't know about D2 and all that would soon be changing her world.

The Movies are filled with great Kid flicks, Oriole Park is calling our name, Six Flags for a Jars of Clay & Mandisa concert, VBS, Music camp, Swimming with the cousins, trips to the library, Weeks with grandparents... YES!!  Who wouldn't love summer?

This morning when I woke D2 up I said "it's 7:30, time to get moving"  She replied "On Monday I don't even want to know that 7:30 am exists!"  Perfect, cause I don't either.  It's going to be tough to wake up for Husband's coffee making and lunch packing!  Tough, but I will be glad to do it, and then run back up to snuggle with my girls and sleep!

Ahhh, summer... you don't know just how welcomed you are in our house!!