When a haircut isn’t just a “haircut”

Not much is simple with this guy… not even a haircut.

We honestly only cut our son’s hair once to twice a year…  Why, you ask?  Well, if you have a kid that goes into sensory overload or have ever witnessed a colossal sensory overload break down, then you know why.  If not…  consider yourself lucky and hope you don’t ever have to experience it.

Everet is very sensitive to sounds.  The buzzing of clippers sends him into absolute total chaos.  I am sure the neighbors assume we are killing him and at times, I feel as if we are.  I also question myself if it is important to get a haircut and try to convince myself that long hair is always “in”.  But reality always takes hold at some point and at that point the clippers come out.

He has the most beautiful curly hair that should have been reserved for a little girl!  But in the Williams Syndrome Community most of the individuals affected by the genetic disorder have curly hair.  No only is it part of the syndrome, it is part of my side of the family.  I can say he came by it honestly.  You may be thinking to yourself that i’m crazy for cutting his curls, but everyone needs a change now again, right?  We call it Everet’s summer cut.  He is super hot natured, so we take if off in the summer and let it grow in the winter.

Well this year was tougher than most.  My husband cuts his own hair and has always cut Everet’s hair.  It usually takes us a couple of tries and a couple of days to get all the stragglers, but we get them!  Eventually…  After taking our first try at his haircut and wrestling a wild alligator, the cut was done for the time being.  He screamed to the point of exhaustion on top of making himself practically throw up.  As I got him out of the chair to comfort him, his little body was shaking so hard I could hardly hold him.

No amount of distraction helps. NONE.

I had asked my husband to leave a little on top, so I could style it a little and keep a few of the curls.  He granted my wish and I thought he looked pretty good, considering….

When I picked him up that day from school, I was greeted by one of his teaching assistants (that was a hairdresser by trade) loudly portraying to me how awful his hair was and kept telling me to let her fix it.  (In my mind demanding that she fix it)  I gathered myself as best I could and calmly tried to explain what we have to do to get a haircut, etc.  She wasn’t having any of it and continued on and on and on and on and on……  I felt like a tiny little mouse backed into a corner.  I quickly grabbed both kids and their stuff for the day and made the fastest exit I have ever made.

I was so mad at myself…  I have never “backed” down, yet I knew in my heart she meant no harm. She is a sweet person and loves my kids, maybe that is why I didn’t explode.  Truth is, it breaks my heart every time we cut his hair.  Not because I am attached to his hair, but because I feel we are torturing him and he is tortured enough on a day to day basis without his parents (his safety nets) inflicting more.

The drive home was quiet.  I think the kids could feel my tension.  Once I got them home and settled so I could cook dinner, I sat in the kitchen out of sight and cried.  Feeling sorry for myself and feeling like a blubbering idiot while replaying the scene in my head over and over again.  Of course I text a friend with a similar sensory kid issue and let my misery love her company.  She quickly sided with me and her inner momma bear came out.  I felt her comforting hug through her text and was able to move on with our evening.

Until…  Until I got a text from the teaching assistant.  I didn’t even want to read it.

She of course apologized and told me she was sincere when she offered to fix it.  She said she didn’t mean to “come at me” in that manner and the other teaching assistants told her she came on a little strong.  I swallowed my pride, thanked her, and invited her over the end of the week to fix it.

Everet was so excited to see her outside of school and actually did pretty well for her.  Much better than he has EVER done for us.  She has offered to continue to come and help out whenever we need it which is amazing and has also done my hair in my own home when I was in a pinch.

It is so easy to take the little things, like a haircut, for granted.

We have learned that not much is simple with Everet and this journey has been a HUGE learning experience for all of us.  Take my advice and celebrate those simple things and little victories.  Because for people like Everet, not much is simple and there is definitely no “little” victory, they are BIG and we celebrate BIG!

 

 

 

 

Time

It has been a while since I last wrote.  It is hard to explain why and I have no true excuse other than life gets in the way and time moves too fast.  I used to laugh when people would say “don’t blink!”  You won’t see me laughing anymore at that statement you will only here me agreeing.

If truth be told, I have been in avoidance of the blog…  Writing things down in black and white seems to concrete them somehow different than speaking them.  I spent some time being a little angry at our Cardiologist, at God, and being a little angry at my lack of control about our situation.  (Yep, I fully admit, I am a control freak)  It makes me wonder if each time we get news that isn’t positive, if I will always be angry.

Our latest visit to the Cardiologist wasn’t exactly what we had hoped for.  Don’t get me wrong, it wasn’t awful.  It just wasn’t the sunshine and roses I wanted.  The same “punched in the gut” feeling came rushing back out of no where leaving me to be angry at the world.  I was also a little ticked at myself for being so selfish as I looked around at the kiddos that were probably much worse off than Everet and not remembering to be thankful for the positive things that our little family has.

It’s crazy the emotions that surround a question.  A question that is generally asked to everyone that has a doctor appointment.  The question of “do you think he has been feeling ok?” (The question being asked with squinted eyes and raised eyebrows).  What I answer and what I REALLY want to answer are always two different things.  I keep my calm and professionalism enough to say “well…  he has been more tired and doesn’t truly seem himself at play, etc.”  But what I want to say is “WHAT ARE YOU GETTING AT, he obviously had something show up on his echo, so spit it out already!”  I have learned quickly that almost no question is asked by a specialist unless they already know the answer or have a pretty good idea what the answer will be.  I call this “fishing” and warming you up for the bomb or bombs about to be dropped.

Sooooo we go through the formalities of where we started with diagnosis and his SVAS narrowing’s to where we are today and what we need to look for.  AND THEN HERE IT COMES….  His voice becomes Charlie Brown’s teacher, wah, wah, wah, wah, wah and everything sounds a little echoed in my head.  I quickly switch out of mom mode to business mode,  because if I don’t the tears will start and that doesn’t do anyone any good.  I nod my head politely, ask a few questions all the while praying my voice doesn’t crack or shake, then we shake hands, and proceed on our separate ways to wait until the next appointment.  WAIT.  Waiting is awful, the not know from day to day is awful.  The next 6 months would not fall into the “time goes too fast” category, it would fall into the longest 6 months of my life thus far.

Time is such a funny thing, isn’t it?  I hate it.  It is always way too fast or way too slow.

Surely by now you have gathered his tests showed things a little worse and a new narrowing they weren’t worried about has now doubled in size and restricting blood flow.  He stated although things were worse the blood flow still looked good and strong and he felt there was no real reason to be concerned…..  yet.

I spent the next couple of weeks in zombie mode.  Not really sleeping, not really eating, and enjoying a few too many cocktails.  Until finally my husband said (well kind of yelled and he never yells at me) “what is wrong with you!?”  Now…. that is a fun question to try and answer when I felt he should know what the heck is wrong with me and he should be feeling the same way!  You know…  misery loves company, right!?  Maybe I was angry at him too for handling it so well because that was my job, to handle things well.  Usually Craig is almost dismissive and tells me all the things he is supposed to say as any good husband would;  like “it will be ok”, “we can handle it”, blah blah blah….  But this time I stopped him and told him I needed a little validation for the way I was feeling and he needed to allow me to feel it.  He smiled at me with tears in his eyes and hugged me.  Of course the water works started and after that I honestly felt better.  Craig has this thing with me….  He assumes I am a rock and can handle anything.  I’m nothing of the sort.  I think I am a good actor.  I do try and focus on the positive most days and hide my true feelings for the sake of all others.  But that day, I just needed my husband to hug me and tell me he felt the same way.

So, maybe not being alone when in crazy mode is good.  Maybe misery does love a little company from time to time.  Maybe it’s just my coping mechanism.  I don’t know.  My heart still breaks a little more after each doctor visit, but I will still choose to never take for granted what I have and make the best of our time regardless of my moments of anger.

Regardless at the end of the day, I would still take a magic wand if any of you have one to spare.   Who knows…  maybe Everet will be fine.  Maybe he will out live me.  Kiddos are resilient.

Only TIME will tell…  It is what it is my friends.

Trust Your “Mom” sense

Dear Doctor,

Today I am sitting and reflecting over a story I heard.  A wonderful family lost their beautiful little boy.  Should it have happened?  No.  Should someone have listened to the mom when she called the nurse line or when she brought him in to the office?  YES! Because her “mom” sense was disregarded, it was too late for him.  It was too late for the emergency room docs, Life Line, or the Children’s hospital he never made it to.  His little body gave out…  Imagine yourself in the shoes of the family.  Imagine yourself in the shoes of the nurse on the nurse line.  Imagine yourself as the doc that disregarded his condition and passed it off as another virus that needed to run its course.  Can you imagine?  No, you can’t unless you have walked in their shoes.

So, guess what?  I am going to be “that mom”.  That mom that bugs the crap out of you when my child is sick with unexplained symptoms, with the slight fever that can turn to craziness in moments, and that mom that brings her kids in for the common cold because my one kid has asthma and the other is compromised from a heart condition.  Do you know why?  Because I am “THAT MOM”.  My children are my lifeline and are the biggest part of my very existence.  Because of the day we were disregarded about our son’s health and pushed to the side for almost a year when he had a life concerning heart condition. Because of the day we went to the emergency room and was disregarded by the physician as the “mom who cannot get her kid to stop crying.”  Yes, I heard you!  I heard you when you said to the nurse behind the curtain, “she is one of those moms” and then you sighed as a true sign that we weren’t worthy of your time.

What you don’t know because you didn’t care to listen and because you didn’t care to look in his chart, is that he was a sick little boy.  A little boy who was wearing a 30 day event/halter monitor to check for ischemic activity. Because he had been having symptoms mimicking a heart attack.  Remember when you disregarded all of those things and many more? Remember when you went to discharge us and hadn’t even examined him?  Remember when I questioned you and asked you why? Remember when you got angry and decided to put him through every test known to man EXCEPT for the ones he really needed.  EXCEPT for the ones I kept asking about and you disregarded my words. Why do you think I asked to be transferred to a children’s hospital?  Because I didn’t want to be the mom who ended up hating herself for not trusting her mom sense.  The mom that trusted the doctor when he said nothing was wrong.  Why?  Because I know my child better than anyone.  Because my “mom sense” was spot on and I knew you were wrong.

YOU are the reason children are in danger, not “THAT MOM”.  YOU.  We put our faith in your hands to care for our children.  Well….  no more.  Because if you said or did one thing correctly that night, you pegged me as “THAT MOM” who wasted your time.

So, thank you.  Thank you for giving me the sense and the strength to go over your head.  I am so thankful my child is still alive unlike the story above…

Any mom reading this…  I challenge you to become “THAT MOM”.  Why? Because she saves the lives of her children.

Sincerely,

THAT MOM

An Unlikely Friend

I know nothing for certain about my son’s health, but what I do know is that he will be loved like no other child and he will be given every opportunity to thrive, live, and be whomever he wants to be.  I’m already amazed at who he is and what he teaches me daily.

But this week…  this week….  UGH!   This week….  I am, I am doing it!  I am choosing to persevere and relish in the blessings before me.  But always, goodness always, somewhere in the deep dark crevices of my mind lies the sinking fear of waiting for the other shoe to drop. It is always there.  Lurking and it lays in wait ready to pounce on our joy.  It will pounce because we have let our guard down.

Letting that lurking fear immediately makes me feel guilt due in part to a conversation had today with a peer.  On any given day we exchange niceties and speak to each other about our world at work and how if someone would just listen to our opinions the world would be a better place.  Today…  today was different.  We of course exchanged our normal words but then, the conversation morphed to a more personal level.  It went from insurance craziness to him opening the door and asking the question, “what exactly is the heart condition your son has and is he ok?”

I had promised myself I would never sugar coat the answer to that question or skirt it.  I would face it head on.  I would face it just as I’ve had to face my worse fears over the past year.

I held it together long enough for the “cliff notes” version while hitting the highlights.  As he teared up, he confided in me about his own story.  I quickly felt relieved.  On one hand I hate that someone else has been in pain over their child and in a lot of ways seeing that he still carries that pain especially over the unknown.  But on the other hand it was relief to not be alone  and to know that fear is ok.

This new unlikely friend of mine experienced the unthinkable, he experienced the loss of his child.  I still have mine…

By the time our conversation had ended I was reminded to not fear and to stay faithful.  I was reminded to cherish every moment.  I was reminded that you never know what Hell someone else has walked through, but if your experiences and even your pain can help one other person then you are walking the path correctly that was chosen for you.

I was reminded that every day is a gift and to never, NEVER, take one moment for granted…

 

Mourning Our Child

My mind was in overdrive and reading anything and everything I could get my hands on. Everyone, I mean everyone, was offering their opinion…  All I wanted to do was find a magic wand and lock myself in a dark room with a nice bottle of red wine. If that didn’t work I was ready to pack the family up and live off the grid!

From family members offering to pray to “restore his genes” to people talking even crazier about replacing his genes, I had enough. Then I read the words “we had to learn to mourn the child we thought we were going to have and accept the one we do have.”  Well, those words pissed me off too…  excuse my language but I thought to myself, who cannot accept their child and why would you have to “mourn” them?

I thought back to that day in the car on the way home from the hospital.  The day when the doc confirmed our son had something going on and told us what he thought it may be. I remember feeling almost relieved, almost happy…  I wasn’t sad or mourning who I thought my son was or trying to accept him because of a diagnosis, I’ve already accepted him.  I accepted him the day I learned I was pregnant with him and it was more concrete on the first day I laid eyes on him.

That day in the car I chose to celebrate him. I chose to celebrate all that he is. I chose to not accept his heart condition because we would work to keep him healthy and make every effort to give him every chance. I was not in mourning for any expectation I thought I had for my son and I never would be. I knew I loved him unconditionally and so did my husband.

Im lucky…  most would say blessed. There will be no mourning in our house only a celebration of life. We choose not to waste precious time or moments dwelling on perfection.  Perfection is a state of mind or it doesn’t exist.

Life is seriously too short.

“D”-Day, Diagnosis Day

I remember the doctor’s specific words…  “the results will be back in 3-6 weeks, but with the holidays it could take longer.”  He also told me to call the office as often as I felt I needed to see if the test results were in, because it is easy to lose sight of them among the hundreds of papers on his desk.  He also said to do our best not to research things on the internet, it would only give us worse case scenarios.  How could it get any worse than this? NEVER EVER EVER ask that question…  NEVER.

It was December 17, 2014.  Just days before Christmas and a few weeks before our son’s first birthday.  Three weeks fell on New Year’s Eve, 4 weeks fell the day before his first birthday.  Oh what a joy the holiday season would bring this year…

Leaving the hospital that day was a haze, but the car ride home I remember vividly.  We agreed that in our hearts the test results would come back positive, but a small part of both of us prayed they were negative.  Our main concern was his heart…  screw the words Williams Syndrome, special needs, different, non-typical, etc…  I wanted my son to have a NORMAL heart!  I remember praying and asking God to please let him live to be two because I needed him to celebrate his first birthday and his second…  I needed more than that but I was trying to barter.  Who barters with God?

The next few weeks were filled with questions by our family including the question “should we cancel Christmas?”  I was almost offended by the question but quickly reminded myself they were only trying to do what was best for us or what they thought we needed.  But honestly I needed Christmas more than ever.  I needed NORMALCY.  So, I wrote my side of the family a letter to give the on the day we celebrated Christmas.  I asked them for 3 things:

  1. Please do not treat us or him any differently.  He is the same kid he was a few weeks ago, a few months ago, and the same kid he was the day he was born.
  2. Love us through all of this, because there are going to be times we just need you to be there.  No words, maybe a hug or just your presence.
  3. Pray us through it, because we are going to need it.  We are going to need faith more than ever.

There was more to the letter but the listed 3 things were the most important.  I remember reading the letter aloud to them and also quoting a bible verse that had been passed on to me by family friend.  “Trust in the Lord with ALL of your heart, rely not on what you think you know, remember Him in EVERYTHING you do, and He will show you the way” -Proverbs 3:5-7

My letter was followed by a long silence until I decided to break the sniffles with cracking open a few beers, handing them out, and toasting the family into Christmas.  Again…  I needed to get back to NORMAL.

I called the cardiology office exactly 3 weeks and one day past the 3 week mark.  I knew in my bones the results were there and I needed 100% confirmation.  I needed to prepare for what was to come.  I needed to be in control, in control of something…  anything.  I needed to CONTROL SOMETHING!!!!

The nurse told me there were no results.  She didn’t even ask my name or my son’s name.  How could SHE know there were no results?  Was she psychic?  Was she omnipotent?  My response to her, as closely as I can remember, went a little something like this…  “I know you are busy and it is the day after New Years, heck you may be tired from all of the holiday fun you had with your family BUT, when I call back tomorrow and ask specifically for YOU would YOU please at least ask my name or my son’s name?  Would YOU at least put me on hold so YOU can pretend to care and check to see if his results are in?  Because I honestly plan to call daily and ask for YOU until YOU tell me the results are in and put me on hold to speak to the cardiologist for details.”  The phone went silent to the point I had to ask if she were still there and of course she started back peddling and apologizing…  The only thing I heard sounded like Charlie Brown’s teacher, “wah wah woh wah wah….” I politely stopped her and gave her my name so a return call could be made if need be.

Guess what!?  The cardiologist called an hour later confirming everything we already felt in our bones.  The test was 100% positive for Williams Syndrome, he had a slight narrowing in one of the main areas of his heart, he was going to need life long therapy and his heart would need to be monitored frequently because eventually intervention would have to happen for him to survive.  Again…  I heard Charlie Brown’s teacher…

By the time I hung up the phone, we had a follow-up appointment, a list of things I needed to get started on, and a timeline of doctor’s appointments, referrals, etc.  I had in my hands a piece of paper that helped me regain control.  Whatever that is…   Of course I sat in my car feeling paralyzed unable to move, unable to think because the only words resonating were “heart intervention to survive”.

More to come…

 

 

What Does the Word “NORMAL” Even Mean?

My beautiful son was diagnosed days before his first birthday with a rare genetic condition called Williams Syndrome.  Most parents would have been devastated by the diagnosis, but I have to admit I was relieved and if truth be told my husband was too…

We knew from day one that our little guy was different for lack of better words.  We struggled from the beginning with feeding and were constantly dismissed or his issues were always explained by what they call the NORMAL of the abnormal, even after we were hospitalized three days after I went home from giving birth.  What should have been a joyous time of bonding as a family was a nightmare.  Trying to explain the constant crying and struggling to nurse to his 16 month old sister was no easy feat.

The day of his 3 month check-up I was determined to get some answers.  As a parent I think you just know something is off…  Little did I know before I could even ask a question the doc had a funny look on her face while performing her routine check of listening to his heart.  She furrowed her brow and said “I think I hear a heart murmur, but don’t be worried!  I am sure it is NORMAL because a lot of kids have murmurs.  But, just to be safe we will set up an echo at the local hospital.”  I think at that point the wind had been sucked out of me and I had forgotten anything I wanted to ask.

During his exam it was determined that is was “NORMAL” and all should continue to develop properly over time.  There was that word again….  NORMAL.  Really?????  What about any of this is NORMAL?  The pediatrician assured us the results would also be read by a pediatric cardiologist at Riley Hospital for Children.  If follow-up were needed we would know over the next week.

Then we got the call…  The echo needed to be repeated because there were areas of the heart the tech didn’t cover.  So of course, we were scheduled again and again the test was NORMAL.  Again we were dismissed and told not to worry he would eventually catch up in size, figure out how to eat, and the murmur would dissipate.

We struggled through the next few months trying to convince ourselves everything was NORMAL.  The eve of his 6 month well-check I remember lying on the floor staring at him and knowing in my heart that we needed help.  As my husband sat next to me, I expressed the concern out loud.  He agreed and the words he spoke after that will stay with me forever…  He said, “yes, I agree something is different and I feel we need to push the doc harder.  But at the end of the day he is our son and if he has to live with us forever, he lives with us forever and I will love him more because of it.”  I honestly fell in love with my husband a little more that evening for his sincere words.

During his appointment the next day the heart murmur was still there, louder than the last time, and we also found out the echo tech did the same exam as the last and changed nothing even after the Riley Cardiologist had asked to see different views.  Of course…  we were sent into a tail spin again.  We were referred directly to Riley at that point, but were triaged because we were considered non-urgent and it took another 5 1/2 months to get an appointment.

Stayed tuned for diagnosis day which I refer to as “D-Day”….

 

 

 

 

What’s in the name?

Knowing I wanted to start this blog also came with figuring out a name. I didn’t want a name that would pigeon hole it into one category, I wanted something not only meaningful but something that could take on a whole new meaning if necessary.

A few weeks ago I tragically lost one of my nieces.  She loved butterflies…  The day before her funeral her older sister painted several butterflies to spell out her name for part of the memorial.  As I sat with her and watched her, the act of her painting and the butterflies took on a whole new meaning for me.

Butterflies can sometimes symbolize new beginnings and starting over. Their evolution of life is amazing if you think about it.  They transform themselves from one being into something amazingly beautiful.  I think my niece constantly struggled with her identity and wanted to transform, but when she found herself unable to.  So she took her own life.

Watching her sister paint through the tragedy and pain of losing a sibling in order to honor her sister reminded me that we can always find beauty.  Even if it’s in the most terribly tragic places.  The name hit me and stuck with me…  I asked her permission to use the it and she graciously agreed.

If I have learned anything over the past few years I have learned not to take life for granted and I have learned to find beauty daily and not to focus on the caterpillar…

The Why…

Hello!  Welcome to my therapy, I mean my blog site!  I blame my husband for the start of this blog and I’m sure he doesn’t even realize he is responsible…  as he claims about most things around the house!  At my ripe old age of 39 I have faced many challenges and still face many daily, as many of you do.

It was 4 1/2 years ago when the idea of writing came about all because of a comment my husband made during a very difficult time in our marriage.  Not because we were having trouble in our marriage but because we were facing the loss of our second unsuccessful pregnancy. He said “Sometimes we go though challenges and difficulties in our lives in order to be able to help others.  Have faith, God will see us through this.”  Little did I know how right he would be…  Little did I know it would spark this blog after so many years…  and little did I know how many people I would already encounter in the past 4 1/2 years and little did I know that I would actually want to share our story…

So, thank you for joining me on this quest for peace and I hope you are able to find something of use along the way even if it is making YOU feel better about your thoughts/emotions…  Because I know it can feel like a lonely world sometimes.

Enjoy every moment of each day….