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.