Sunday, May 10, 2015

Not so quality medical care, Momma's sick.

I held off on writing this because I don't like to write from emotion alone no matter how I'm feeling. I want to step back and be fair, re-evaluate and think the entire situation through.  Ok, and not be so mad that I'm typing out f-bombs like punctuation, which is a very accurate description of where I was earlier today.

I've always been very supportive of our local clinic and hospital.  We are very fortunate for a small town to have the medical facilities that we do. I've never really understood why people leave town for medical care - especially in an emergency - or complained about the quality of care that is provided.

Until today. 

I am the first to admit, I've been incredibly spoiled with the absolute best medical care for my family.  I was under the care of Dr. Steutermann for both of my babies, because of him and the great medical team that delivered Parker as an emergency c-section my uterus was saved and 3 years later I welcomed my beautiful princess, Allison, into this world.  When Parker's delivery took a turn for the worse (for me, not him) Dr. Steutermann never gave up, I'm told he swore like a sailor that day which was incredibly uncommon for him but his determination persevered and to this day, I am thankful to him.  I received incredible care pre and post pregnancy. To this day, since his passing, I have not replaced him... I know I need to but... I haven't.  From birth, Dr. Krock has been a part of Parker and Allison's lives.  If there is something he is not familiar with, he's open and honest about that with me and searches for an answer.  He's incredible with both of my children, accommodating for their disability, always learning, always asking questions and always putting new solutions out for us.  He works wonderfully with the Fragile X specialists and holds my highest respect. It takes a lot to get me to the doctor, I was under the incredible care of Dr. Day for many years until he retired. Replacing him took me a lot of time (ok, and getting really sick) because those were going to be some huge shoes to fill.  I was lucky to be referred to Dr. Bowers, who has always went above and beyond for me, listens and doesn't give up on me.

Several years ago, Allison had stitches from a mole being removed by her dermatologist near her ear.  The day of her birthday party  she landed wrong on the trampoline (which she had been cleared to jump on) and split the stitches open... at 4:55 pm.  With a quick call to the clinic, Dr. Buckley and his nurses told us to hurry down, they would stay and wait for us and stitch her back up without a trip to the ER.  This is the type of home town, personalized care that we've always had.

It's not just the doctors, we've had the best nurses like Elsie and Mary (and way too many to name), I'm yet to meet a receptionist that I don't adore and last week when I took Parker to the lab for a throat culture, we had - hands down the best lab girl in the entire world.  (her name is in my office as I have on my list to write the clinic singing her praise).  She was outstanding with Parker thoroughly impressing me and successfully getting his throat culture.  To say she was amazing, fun and spot on with working with someone with a disability just isn't praise enough for what I witnessed.

So, yeah... spoiled.  I've been spoiled with incredible medical care here.  Spoiled to the point that I expect it.  I expect to have qualified, pleasant, caring professionals working with me on my medical needs.  Not getting that today has left me understanding why people don't choose our local clinic and services.  

Here's why.

My allergies have been difficult all week.  Pollen counts are high, everyone is mowing, my windows were open for 2 days because our air went out.  Our allergies are the reason you rarely ever find our windows open (and reason #18471 I love winter so much).  So as the week has went on and I've become increasingly more ill, I began to question if it was really just my allergies.  I was faithfully taking Mucinex, Tylenol, Ibuprofen, Clariton and now and then Robitussin just for an attempt to breathe.  As the week went on, I developed a tight, deep cough and wheezing. I couldn't take a deep breath and my chest felt like a million pounds of pressure caving in.  My ears began to ache, my throat began to swell, I couldn't regulate my body temp and I could not shake the headache and pressure in my head.  Still... I had this under control.

Until I woke up this morning with a 103 degree fever and chills in addition to everything above.  I was a barely functioning mess.  It was also Parker's regional track meet, not just his opportunity to qualify for state but also he was chosen as one of the members of his team to be part of the torch run during opening ceremonies.  This is an opportunity that will likely never come along again.  Missing it was not an option.

My mom met us in Monmouth for the track meet.  Mom, I should mention, is a nurse.  In talking with her and with Scott's girl friend, Jen - also a nurse, it was clear I would need to leave the track meet and get into Urgent Care for something fast acting in the form of a shot, to get me started.

I left the track meet after 2 of Parker's 3 events and headed back to Canton after debating going to the Galesburg Urgent care because it was closer.  I chose to drive all the way back because this is where my trust is.

I thought it would be better to call Urgent care instead of just walking in, giving both them and me a better idea of who would be there and the approximate wait time.  When I called, the receptionist said their appointments were full but she would pass me back to the nurse who could help me.  That conversation was the start of what was a day of understanding all of the negative attention our clinic gets.

While on hold, the phone suddenly started to ring.  When someone answered I was not sure if I was back with the receptionist or what had happened, so I said, "Hi, I was holding for the nurse." in response to the "Hello?" at the other end.

She replied, "This is the nurse."
Silence.
I said, "I understand you are full this afternoon but I need to get in to be seen.  I was wondering if it is possible to make an appointment."
She said, "No.  We are full."
I said, "Ok, well, you are a walk in clinic, correct?  I can just walk in to be seen."
She said, "No.  You have (counting) 14 people in front of you.  It'll be at least 2 hours."
I said, "Ok, then can you put me down for 2:46 ( 2 hours from the current time)"
She said, "No. We are not taking appointments."
I said, "Ok, I can come in as a walk in and wait 2 hours."
She said, "No."

MIND YOU, she never even asked what was wrong.  My voice was incredibly horse, I was struggling to breathe to talk - clearly I was sick.

I said, "Actually I can."
She said, "If you wanted to be seen you needed to come in or call at 8:30 when we opened."
I said, "8:30 this morning was not an option. I had other obligations."
She said, "If you were able to do other obligations you are clearly not that sick."
I said, "You have no idea how sick I am. This was not an option. I will just walk in and wait."
She said: "If you are that sick, you should go to the ER."
I said, "There is not point to go to the ER when we have an Urgent care. That is why you are there. I will just walk in."
She said (again) "We do not have time, there are 14 people ahead of you."
I said, "I look forward to spending time with you in a couple hours. I can't wait." and hung up on her.... possibly after muttering something resembling the f-bomb.  Not my best moment.

When I arrived at the clinic there was ONE, yes 1 car in the parking lot.  I took pictures I was taken off guard by the lack of cars there.  No one was in the waiting room. It was just a super sweet receptionist.

I told her I'd like to make an appointment, hearing my voice she said, "didn't you call a little bit ago?"  I said, "Yes and against the nurses advice, I am here."  She said, "You are in luck, we had a 1:45 appointment just cancel.  I can put you in that time slot."  I said that would work.  She apologized for the lengthy wait time which I told her I understood and expected at an Urgent Care, especially without an appointment and thanked her for getting me in.  A couple of people (3, I believe) came in with appointments while I waited.  No big deal.  Clearly not 14 but I was rather thankful for that miscalculation given how bad I was feeling.

When I went back my temp was 101 with Tylenol 2 hours in my system. When I was seen the focus was on my allergies.  I was simply having an allergy attack.  No looking into my ears, my throat, nothing.  Just a strong recommendation to use a netti bottle (which I am very opposed to knowing that if your water is not clean enough you could be doing more harm than good and I was raised not to stick things in my nose - yes, I know many people love them - please, this is not about netti cleanses, that is just my personal 2 cents - it's personally not for me.) I mentioned that my daughter had strep a couple of weeks ago and it was said "maybe that was what was going on with me."  Moving the exam on, it was discovered I was wheezing and had significant chest congestion, I also have fluid in my ears - the left ear being really bad and my throat is red and sore.  No clue on the strep as no culture was ordered.

I said that although I haven't used my inhaler in a couple of years, I do have asthma.  I was told, I don't. I likely grew out of it.  Interesting that 2 years ago, I still had it.  Apparently 41 is that magical age where it disappears.  I wish someone would inform my lungs of that.

The decision was made that I was in crappy shape. 3 shots would be ordered to accelerate the healing process. (I liked this a lot, especially since it was what my mom wanted), an inhaler would be ordered to open up my lungs and an antibiotic to start that evening.

I will say, everyone was very nice.  Nothing at all like the phone call.  They all urged me to call or come in the next day if there was any troubles or I was not better.  Perfect. I was willing to write off the crappy and unprofessional phone call.  I asked about my prescriptions and was told they had already been faxed to Walgreens and I could go pick them up.  So I left, empty handed, no idea what I was shot up with or if this burning in my hips from the 3 shots would subside anytime soon.

I went to Walgreens to pick up my prescription and they said they had not received it yet so I went home to lay down.  I was completely exhausted, burning up with a fever and in really bad pain from the shots.  So, I called mom.  She told me to ice the spots and take a nap, however because I didn't have any paperwork I couldn't tell her what the shots were which made it difficult for her to tell me how long the pain may last.

I woke up after a short nap and went back to Walgreens only to find out they still did not have anything.  They checked their Walgreens system and there was nothing for any of their stores. They recommended I call WalMart to see if it went to the wrong place, so I did.  Nothing.

Here we were, almost 6 pm. Urgent care is closed and our pharmacy's are about to close for the night.  I have had 3 shots and need my inhaler and antibiotic so I call the hospital.  The incredibly sweet receptionist (really, this part of the job they have down!) who paged the dr on call to see if he could access my records and help.

I had already looked at the online patient portal which was incomplete.  Part of my information was there from today part was not.  Lots of "directions are in the notes section" (or something to that effect) was written but nothing in my notes or email, just a partially complete review of the day.  When the doctor called I told him what was going on, he asked what was prescribed and I said I believe Bactrim but I did not know on the inhaler nor did I know the dosage.

He asked which pharmacy and I said my only option is to go to Pekin, 40 minutes away and could he verify that the pharmacy would be open long enough for me to make the drive before giving them the order.  He said, "No. That is the responsibility of the patient. You need to know the hours of the pharmacy of your choice."  Well, I was tearfully sitting with a fever barely able to breathe in the parking lot of the pharmacy of my choice and they were closing. I am sorry I do not know the hours of pharmacy's I never use.  So I said I would look that information up and call him back.  I did.  4 times and he never answered.

So, I called the hospital back and asked them to page him again and request that he call me.  He did.  I told him the pharmacy I wanted, thanked him and started the drive over.  On the way over I called to be sure that my script was called in, it turns out the pharmacy I thought was open til 10 was closed.  Apparently I do not do my best research when I am sick as I looked at their weekday hours, not the weekend ones.  There is another location in Pekin with a 24 hour pharmacy so I called the hospital back, explained my mistake and asked them to page the dr to have him use this other pharmacy.  He did.

When I arrived they had the antibiotic but no inhaler was called in.  I understand that the dr on call for the hospital didn't see me and couldn't prescribe an inhaler without treating me or being able to find it in the notes left by the doctor who had treated me earlier.  I was happy and feeling victorious for having 1 of the 2 items.

Here's the thing.  I understand busy.  Trust me, I understand busy.  I understand frustration. I understand wanting your day to be done.  I understand bad days.

What I don't understand is rudeness.  I don't understand telling someone who is ill that they were clearly not "that ill" if they couldn't come in as you opened your doors and telling them to go elsewhere and not come in at all.

I don't understand incomplete file updates that are being done electronically while you are with the patient.

I don't understand not listening to the patient.

I don't understand saying you faxed in a prescription when you did not. I don't understand how I was sick enough for 3 shots but not for the additional pills to be called in so I could be properly treated.

It's rare I have to stray away from our regular doctors. I'm thankful we have an Urgent Care but will say that based on first impressions - this could not have went much worse. It was not the level of patient care I expect.  It wasn't even close.  I don't expect to be catered to. I expect to wait my turn, I expect to have to update someone who has never met me with all of the things my regular doctor would know... I'm realistic.  What I don't appreciate it being told not to come in and my medications not being called in for me.  I don't like not having information on what shots I was given, it's hard to gauge reactions and interactions if I have no idea what was put into my body (I'd still go the shot route, it was the best decision, I just want to know WHAT it was.) I don't like making multiple phone calls, driving 40 minutes each way and only having part of my medications.

Maybe I'm picky.  Maybe I'm spoiled. Maybe it's a reflection of how crappy I feel.  But this to me is not quality care.  This is not what I expect and I am sad to now understand why others are so quick to go elsewhere and complain so often about the services provided.

I'm also thankful that come Monday, I can call my regular doctor ... who I know will provide quality care.

Sunday, May 3, 2015

Milestones... Parker's 16th Birthday

16 years ago today you came into my world.  I wasn't sure I was ready, some days I’m still not sure I am.  I wasn't the expecting mom who couldn't wait to have this child.  I was the expecting mom who loved knowing where you were, always with me, safely tucked inside my protruding belly. I was worried if I could keep you safe, if I could raise you to be a kind, thoughtful man in a world so filled with evil. I was worried about a million things which, as it turned out, none of needed to cross my mind. I had no way of knowing the worries I would have would be far greater than I could ever imagine.

You came into this world with struggle yet so perfectly.  With your head caught on my pelvic bone, an emergency c-section was ordered.  A surgery that you breezed through, scoring perfectly on your apgar scores, yet leaving me hemorrhaging on the table at risk of losing my uterus. I am incredibly thankful to the medical team who saved my uterus (allowing us to welcome your sister to this world 3 years later) and who with family and friends took wonderful care of you while was I given unit after unit of blood during those first 48 hours. While it makes me sad that I am unable to remember those first 48 hours, visitors, phone calls, first cries and diaper changes I remember clearly not wanting you to ever leave my room.

Some people say that if you can’t bond immediately during the very beginning of life, that bond is not as strong as others - or is lacking. Our beginning bond was not ideal. We were together, you nursed, you were laid in my arms and on my chest, I simply was not stable enough from the blood loss to do anything on my own or welcome you the way I had imagined into this world. Our bond, however, was clear from the start, you made all of my dreams come true and our bond was – and still is – undeniably strong, we have a way of proving the world wrong.

Over the years, we've spent a lot of time celebrating the inchstones in your life.  While other children your age were saying first words, learning to ride bikes, or picking classes for school… we were celebrating in our own way, our own goals.  Through therapy, early intervention, and school you continued to grow and we continued to celebrate things others take for granted, things that come easily or natural to some are incredible struggles for you. Yet, we never lose hope or faith.

Your birthday is always a little difficult for me, as your mom watching you grow up into an incredible young man is beyond expression – I am so proud.  It’s difficult because time is going too fast and I need it to slow down. Not just because I don’t want you to grow up (although that’s part of it!) but because we don’t have the answers we need yet and I know each day that goes by is a day we've lost from your future.

I've struggled with incredible guilt over the years since your diagnosis of Fragile X. I struggle with the fact that I didn't know, I had never heard of this genetic condition that I have inside of me and that I would pass along to you… and your sister.  I didn't know. I am so sorry, I didn't know – while I never, ever want to even think of what my world would be like without you, I am so sorry that you have missed out on the life that could have been if you did not have Fragile X Syndrome.

It’s not often that I let myself go to this place in my heart and mind. It’s an incredibly difficult place to leave once my mind is here.  Sometimes, I simply can’t help myself – the world around us has a way of triggering my mind and emotions to visit this spot. Sometimes it’s seeing kids your age playing at the baseball diamond, football field or basketball court… seeing them independent and now dating, driving, working, preparing for college and the next steps in life. 

It also happens often around your birthday.

During one of my favorite days of the year, the day to celebrate you even more than I do every day, a cloud of guilt tends to hover over.  Another year without an effective treatment for you, another year without a cure, another year of incredible accomplishments and mountainous hurdles… another year where you are trapped inside of this neurological disorder that stops you from living a life of unlimited possibilities. This year your birthday has hit me harder than ever before.

Today you turn 16.  16!!  Putting aside for a moment that I’m way too young to have a 16 year old son, even one as incredibly handsome and wonderful as you… 16 is an incredible milestone for every one.

In our buzzing world of social media, I can’t simply hide my way through this year away from the reality of watching your friends learn to drive, flashing the picture of them with their driver’s license, and proudly showing off their new (or new to them) car. It’s there, daily as I log into Facebook, Instagram or Twitter.  I love your friends dearly, my heart is filled with excitement for them and pride in who they have become.  I cherish those who have never left your side and include you on this journey of life through grade school, middle school and now in high school.  I am, happy for them.  I also hurt, deeply, for you and for me for the experiences we don't get to share.

This (driving) is a milestone we likely will never meet. There was a time I believed we would, I was told “we will have a cure before he reaches puberty”.  They tried, they really did and they continue to.  We've participated in research and continue to. I know it will happen, however, I also know it is too late in your life for you to have a “cure”.  There will be an effective treatment in your lifetime, I believe with my entire heart, it will cure those not yet born or those still very young… but it’s too late for a “cure” for you.  It’s ok. An effective treatment will be amazing and life changing – and you will continue to shine.  I just have no idea when it will happen which leaves me to focus on today.

I will celebrate this entire day with you, from the moment you wake up until the moment you lick my face and tell me goodnight… we will celebrate you to the extent that you can handle.  What you won’t see is how much my heart is breaking today, that while I have given you a life filled with love, I was not able to give you the life like your friends… the life that would put keys in your hands today.  A tiny part of me sees this as a blessing, I never have to worry about you out on the road driving, breaking curfew, drinking and driving, drag racing… that endless list of possibilities that happens when you are able to drive.  Still, I’ll always hold the guilt of never being able to give you that “typical” life – because you deserved it.  You deserve so much more than this life has handed you.  It doesn't mean you don’t have gifts, you do.  You inspire people world-wide, every single day.  The world has watched you grow up, they've laughed with you, cried with you and celebrated with you.  You will possibly positively impact more people in this world than any of your classmates. The difference is, you will likely never realize the amazing impact you have on this world, how you make it a better place.  That won’t stop me from telling you and reminding you how incredible you are and how love you are by everyone every single day.

Today, I can’t give you a car to drive (well… I could just not legally and it wouldn't end well), I can’t know what you are thinking, I can’t do many things or give you the ok to do them… but I can continue to love you more than life itself. I can promise you that today, as you celebrate your 16th birthday, that we are in this journey together.  I can honestly tell you that you have filled my life with more love, pride and inspiration that I ever knew was possible.

And while I can’t give you a car or driver’s license – I can make a promise to you and plea to those whose life you touch.

My promise to you remains the same, I will always love you unconditionally, you are my smile, my laughter, my pride, my heart and my soul.  You are my inspiration and I am better because of you.  I promise to continue to do everything I can to make a difference in this world.  I will continue to work hard so families who are diagnosed know they are supported and never alone on this journey.  I will continue to advocate for you and others on every level from the bottom to the top…our voices will be heard.  I will continue to educate others on Fragile X, raise awareness and let you inspire the world around us.  I will continue to be sure that research is supported.  I will never give up hope that the “more” that is out there for you will happen… it will, my heart believes it.


My plea to those who know you or who may have stumbled across my blog is that today (or anytime this month of May) that you make a donation to our Crowdrise page to support the National Fragile X Foundation in Parker’s honorCelebrate Parker’s 16th birthday by making a donation in his name, being a part of the support we need that the National Fragile X Foundation provides to families on this journey; providing advocacy, supporting research and raising awareness that impacts our every day life.  Fragile X isn't about just one thing… it’s about everything.  Research is one aspect to our lives, one aspect to our future.  We still need to get through today, tomorrow and the weeks and years that lead up to that life changing answers.  We can’t do that without support, awareness, education and advocacy – we need every aspect, including research, to be sure that Parker and those living with fragile x, have the daily skills and tools they need to be successful adults.  One inchstone…one milestone at a time.  You can make your online donation to celebrate Parker’s 16th birthday here .

Parker, 16 years ago when you came into this world, you forever changed my life making my dream of becoming a mom come true. You have taught me patience, understanding, respect, fight and determination – I am forever thankful.  There are no words to accurately describe the love a mother has for her child but I don’t think I need to.  I believe you see it each time you glance into my eyes, hear my voice and feel it with all that we are with each squeezy hug. I’m sorry this isn't the life we had planned, a part of me will always hurt over the experiences that will be out of your reach but I am not sorry that you are my son.  I cannot imagine my life without you and pray that I never know. Whether we are celebrating an inchstone being met, a milestone, or just that it’s another day together – every day I celebrate you.  You and Allison are the most amazing gifts I've ever been given, the 2 of you complete me, inspire me and leave me bursting with love and pride.

Happy 16th Birthday, Parker.  Mommy loves you most of all…and has a ridiculous amount of Cubs themed gifts for you today!!  :-)

For our friends… please celebrate Parker’s 16th birthday by donating here.  It all adds up, no amount is too large or too small, it all – just like each one of usmakes a difference.







Sunday, April 19, 2015

Life's reminders

I love to write, it's why my blogs are often long instead of short.  I love the details of life, of our journey, our daily story. Sometimes though not many words are needed as a circumstance itself often leaves a bigger impact than words ever could. Translating those experiences into words sometimes comes naturally and sometimes feels like the words I've chosen can never make the impact of what caused them to begin to stir in my mind...but I will try.

Last Friday Parker and I made the 4 hour each way trip to Chicago to see the wonderful fragile x specialists.

After the 4 hour drive up Parker refused  - for over 2 hours -  to leave the van and go inside. When he finally did, thanks to Anne & Dr. Mike, he was a superstar throughout his hours of testing charming and surprising everyone - except his expected nothing less very proud mom :-)

When we left for our 4 hour drive home I promised Parker we could stop at American Sale, his favorite store, just outside of Chicago. That stop never happened.

We were in barely moving traffic for 1 hour and 42 minutes.  I could see from my navigation that there had now been 2 separate accidents causing the back up.



During our 1 hour and 42 minutes we traveled 19 miles. Parker watched the clock and was angry when it was clear we would not make it to the store before they closed at 8.

Having barely eaten all day due to his anxiety of the visit he was incredibly hungry telling me frequently that his belly hurt because he was starving. Even after devouring all of the snacks in the van, he was simply hungry for real food.

The battery on his iPad was dead. It was time...and then past time for his medications that he refused to take.

My mind wandered with frustration,  a combination of processing all of the information received that day, disappointment that I couldn't keep my promise of rewarding him with a trip to the store and exhaustion - all of which I continually tried to hide from him with a smile and entertaining distraction.

As we crept along I thought of all of the ways I've focused life on paying it forward and the incredible personal transformations of regaining personally who I am and the path my life has taken over the past few years. I thought about karma. Something I've never believed in and this was an example as to why. As the instances of ways I had paid it forward that week went through my mind there was no way "karma's" return to me was an over  2 hour parking lot meltdown wait out and now barely moving traffic with an incredibly exhausted son. As I sat in the traffic not moving, listening to Parker grumble about the "cutter" I let merge in front of us I began to type out a frustrated status on Facebook blasting the idea of karma and wrapping my mind around what we "had done" to be put in this situation.

I set my phone down in the middle of typing as traffic started to move again. I could see the lights of police and first responders  ahead. I pointed them out to Parker and we began to count the police cars, ambulance and fire trucks. As we slowly crept by what felt like in slow motion past the 2nd accident I quickly realized it was unlikely that everyone survived.  (This was later confirmed by my friend Missy, a 25 year old mom and her 2 year old did not survive the crash.  Our prayers are with their family)

As I looked at the mangled pieces of vehicles attempting to piece together who or what was involved I kept glancing back to what appeared to be the remains of a motorcycle. My mind raced to the couple that had weaved through traffic early on in our slow journey when my navigation was showing just 1 accident. I prayed they were not the 2nd accident and that whoever was in this was blessed with the miracle of survival.

With a lump in my throat and tears streaming quietly from my eyes I remembered that everything in life happens for a reason. A reason sometimes out of our control and part of a much bigger plan.

This wasn't karma, it was a reminder if my blessings. A reminder that we were delayed today for a reason. A reminder that while we didn't get a reward from the store, we are blessed with another day here on Earth with those we love - a much larger and more valuable reward than could ever be purchased. A reminder that we all need to slow down.

I never did post the status. When we stopped for gas I deleted it instead of finishing it. I hugged my boy, thanked my God and remembered why I have chosen to live my life paying it forward in any way I can. It's not about money, I don't have any :-) - it's about caring. Being there for someone who needs a hand, a reminder they are not alone, an act of kindness to help heal what troubles them.

I believe you should do good things and be kind because it's what is in your heart, not for reward, praise or attention. I'm thankful to those who cross my path with understanding,  a smile, encouragement,  support and love and strive to do the same for the people in mine.

I'm far from perfect. I've made mistakes and always will. I can only hope to learn from them and not repeat them. I use them to be better to those around me, not seeking perfection but understanding the difference being there to support and lift others makes in me...and them.

I have my struggles, they are greater than I will ever share..but I also have my life,  something I know not everyone will be able to say today who could yesterday.  I pray for their families, their friends, their communities...and hope the reminders in my future of what is important versus trivial doesn't take such a somber reminder.

Hold tight to those you love. Remember it's never too late to become a better version of you, to start new, to love deeply, to find passion, to follow your dreams and make a difference in this world...make it a positive one, please.


Tuesday, March 10, 2015

When the time changes.

I can't believe it's been 6 weeks since I've taken the time to write. It's not that I don't have a list of a thousand topics I really want to write about, it's just that life is busy and time slips away.  Writing is moved to the bottom of my list, I tell myself "I will tomorrow" yet I don't.

The past few months my life has been busier than normal, I know that seems impossible (to me as well) but completely true.  Some days I'm not sure how I'm functioning, then I look around at the chaos of my room before collapsing in bed for a few short hours each night and realize where the give has been in order for me to take in more.  It's been a good busy though, a busy that has brought me incredible happiness and a sense of peace and belonging that has been missing from my life. A piece I didn't realize belonged or was missing in my life but completes me in a way that I can't even begin to describe beyond my soul is complete.

While I am busier, I am happier and as odd and completely contradicting as this will sound I feel as though life has slowed down enough for me to really step back and see what is going on around me.  A way that encourages me to want to slow down and step back more. That piece that was missing is peace and it's amazing.  Tonight, it was also tested.

Things have been going really well for Parker for quite some time now.  There was the meltdown at Christmas that left the fingernail of my middle finger completely black and blue for over 2 months. While the color is returning, the nail is now chipping away leaving me with the most unique of fingernails around.  It'll be fine, like all of my bruises this one too will one day be a distant memory and not a daily visual reminder of a rough moment in time. It's part of my life... of our life... of fragile x in our home.  We move forward instead of dwell, each day is new.

Deep inside of me, I've tucked away my uncertainty and unhappiness about this week. This week that should be like any other but is disrupted by the wonderful "springing ahead" of our clocks. While it throws off everyone's balance just a bit, I have been quietly waiting for the fall out from it catching up with Parker.

It's Tuesday, one of his favorite days of the week.  Basketball practice.  One of his most favorite activities. Today, I did not anticipate the time change to affect us, even though, I totally should have.

Our evening had been incredibly pleasant. I didn't work too late.  The weather is very spring-like in the mid 40's to lower 50's which translates to windows being opened in the house. Everyone had a great day at school.  I was fixing breakfast for supper... we were like the picture of perfection.

Allison had been outside playing in the sand, later swinging on her favorite swing on the swing set while I was making dinner. I have been debating all winter of getting rid of it but watching her swing from the kitchen window, seeing her smile and so incredibly care free everything around me stopped.  I soaked in this moment in time -  her smile, her laugh as Daisy would run past her chasing the tennis balls Allison had thrown for her, every second of this beautiful spring like day.  I smiled as I watched her, reflecting on how much she's grown up and appreciating how much she's still my little girl and deciding the swing set would stay.

After I had everything ready, I called her in for dinner.  We had 40 minutes to eat before taking Parker to basketball practice.  I had let her hold off on her homework to play outside with the agreement that she could do it while he was at practice. We ate together, I couldn't help but smile as I watched them finish their meals.  That piece of peace that was missing overflows to all 3 of us in our much more completed lives now.

Life had seemed to fall into place. This is a life I could adjust to, easily falling back into the meltdown free days and evenings, taking in snuggles, hugs and kisses over flying fists, headbutts, kicks and being spat on. I wasn't sure when this became my reality but I was more than happy to be right here. It wasn't perfect, I do have a 15 and a 12 year old... we have some awesome teenage attitude from time to time but I'll take it and giggle at the eye rolls remembering how I used to do the very same.

I told Parker it was time to go to practice.  He knew.  It was on his schedule.  It came after dinner.  There was one problem.  One problem completely out of my control.  It didn't matter what the clock said or that the routine of tv programs was right on track, Parker looked at me confused with those huge blue eyes and said, "It's not dark out."

F*#$&@g day light savings time change. Of course it wasn't dark out yet.  We had "sprung ahead" an entire hour. While we watched people enjoying bike rides and walks in our neighborhood, his walls had been silently crashing down inside over this.  His schedule was off and I couldn't fix it.  I knew things had been going too smooth for this time of year and it hit hard. Literally, he hit (me) hard, when this reality crashed down his walls.

I spent the next hour doing everything I have learned to do over the years. We calmly went over his schedule.  We looked at the clocks.  The TV schedule.  We talked about his friends who were waiting.  I was quiet and calm. Every fraction of a second that passed, no matter how calm and quiet my soft sing-songy voice that he likes was I couldn't stop what was happening around me and within him.

I went with my fall back of humor.  Humor always works. At least almost always. Today, not so much.  He asked for the impossible - for it to be dark first, for Dan (who was at work and lives 40 minutes away) to come take him, for coach to cancel...the requests I couldn't fulfill fueled his already growing fire inside.  I had a reason for everything and his favorite reason for us to really kick it in gear so he wasn't late "I had to poop" (not really at that moment but it's his favorite reason for us to hurry through anything so I go with it) was my fallback - of course, his favorite fall back of mine. While it brought some smiles, it wasn't enough.

When I went outside to start the car, he was behind me a short time after, fists flying, tears flowing.  "It's not dark, it's not time, it's NOT dark" he kept repeating.  I'd ask for hugs as I blocked swinging fists, through tears he'd open his arms and hold me close for a hug only to start hitting my back a few seconds into it pounding with a tightly closed fist.

At almost 16 and 6 foot tall, he has absolutely no idea of his own strength as he towers over me. As I held him close I reminded him "soft hands" and "only hugs".  Not wanting to continue this in the yard for the entire neighborhood I guided him back into the house.  Exactly where he wanted to be so not exactly the best move I made but certainly the least physical.

As I regrouped and brought out my best familiar silly voices that I do that he loves, I would text on my phone, the replies brought him down a notch and almost falling over with laughter at times.  It appeared to be the distraction that I needed to redirect him from "not going" to "going".  However with every step that felt like we were going forward and would make it we were thrown back on our asses by the very bright sun still beaming outside.  "It's not dark yet." would be repeated.

I acknowledged the sun, reminded him that it's spring and will be light longer. I dodged a headbutt or two or seven reminding him to be nice. After missing the first 20 minutes of practice we had the shoes previously taken off his feet and thrown at me back on, along with socks and had made our way back outside.

Allison was in the van, I took my place in my seat fairly convinced this would go well.  About 10 minutes and several swings at me later he was in his seat and agreed to close the door.  I exhaled feeling victorious and confident that having made it this far, we'd obviously make it in for the end of practice.  That was my goal, knowing damn well that if he didn't go inside, he had won and Thursday would be a repeat of tonight's battle. With "Old Time Rock and Roll" playing I backed out of the drive as I heard the familiar tapping of drumsticks on my headrest. That's when he noticed he left the front door open.  "Stop" he yelled out while a hand reached up from the back seat connecting with the side of my head.  "Parker!" I said back in my deep and not at all happy, you've pushed me too far voice.  "You do NOT hit mom. Not at all. I am DONE." Almost a full hour into this battle, I was done.  "The door is open" he yelled at me.  "It's FINE" I replied telling him the neighbor's would close it and driving away.

As texts came in checking on us, I asked him if he wanted to make the call I had promised to Dan as a reward for getting in the van.  He did not.  He was focused on the door being open at home.  I was focused on how I would get into the school where is practice was to get his papers of information on Friday's games. I replied simply to the text asking me to call "I can't".  I couldn't. It wasn't about Parker, it was about me.

Disappointment had filled every ounce of me for snapping at Parker, for not going back to shut the door out of fear that he'd get out and we'd be still at home, for not getting him to practice, for the time change winning.  While I knew he wouldn't get out and go into practice, I was still determined to make it to the school to get his paper.  I was fighting back tears, knowing I still had to walk into the school composed to get his papers and explain why he wasn't at practice. I knew the voice on the other end of the phone would instantly bring Parker to a better place, it always instantly did. It's also the voice that's become my safety net, the voice I can't hold it together for, the voice who wouldn't listen when I said, "I can't" and instantly called.

After finally getting the phone switched over to blue tooth we were at the school. I left the phone and kids in the car to carry on their conversation that was switching over to laughter while I fought with every exhausted bit left in me to pull myself together, walk in and get the information that was needed convincing myself I had this under control.

This... THIS should be the easy part.  Post meltdown. No flying fists to block. No one spitting at me. No kicking. No headbutting. No throwing.  Just hugs, laughter and endless "I'm sorry"s.  THIS should be the part where it's easier, not harder.  Yet it's always the hardest part.  While he's moved on and we've made it through, emotionally and often physically, I am drained. Smiling, hiding a tear stained face and pretending like everything is great takes an incredible amount of energy.

With a deep breath exhaled, I walked into the cafeteria to ask for his papers and explain why he was not at practice.  An incredibly difficult task, I'd like to believe I often pull off well... tonight I completely failed at. Making it passed the first two questions of "Have you been crying?" and "are you alright" with simple quick answers there was no keeping the tears back when I needed to explain where he was.

It feels so silly.  He's healthy.  He's in my eyesight.  He's ok now.  So very much to be thankful for.  Yet, tears of exhaustion, defeat and frustration quietly fell and there was nothing I could do except say "It's not dark yet.  Practice doesn't start until it's dark."  Words that the coach's wife very well understood as she walked me to the door.

As I got back in the van, the conversation continued on the phone.  Reassurance that Thursday Parker will go to practice without any problems, that these things happen and most of all that Parker is loved and very much believed in wrapped up the call before the endless laughter and giggles of the goodbyes.

Home again it wasn't long before he was in bed.  Meltdowns take a lot out of all of us. As he settled into his room to watch TV, Allison and I wrapped up her homework.  Sitting together at the table the conversation went from her incredible music score test to the words I am sure she thinks often even though I rarely, if ever, recall her saying: "Mom, sometimes I wonder what Parker would be like if he didn't have Fragile X.'

I couldn't even look at her. My heart ached as tears simply streamed down my face as I reached over to run my hands along her hair finally saying "Me too, princess, me too."

We returned to her school work, focusing on spelling.  Panacea, another word for cure, is one of her words this week.  She looked at me with her big blue eyes and said, "If I were a wizard, I'd create a panacea for fragile x."  A huge smile covered my face, looking directly at her I simply and honestly said, "There is no doubt in my mind you could do it, wizard or mortal, you have that power."

Over the next week... possibly two... we will once again adjust to the sun staying out longer, eventually still being out when it's time for bed.  In the blink of our eyes fall will be here and I'll be explaining why it's dark so early once again.  Likely as a reminder, I guess, that some things are simply out of my control but we will still survive.

Wednesday, January 28, 2015

Discussions with my daughter... I'm sorry...again.

My sweet, beautiful girl... once again, I am sorry.

I want to blame this on anyone and everyone but you know me better than that. I don't believe in blame, I believe in accepting my faults.  While there could be a hundred reasons, the bottom line is I should have asked questions, I should have been thorough, I should have known exactly what I was walking into... and I didn't.  Like many other things, this too I will learn from.

In so many ways you have grown up too fast.  I know all parents say that but with you, it's different. It's not just that time flies by, it's that you didn't have any other option.  While you were born 3 1/2 years later, you were born the "little big sister".

Disappointment is not new to you.  Despite your own struggles with Fragile X (which, yes, I do recognize and do my best to help you through), your brother's struggles are significant and typically trump everything.  Tonight was no exception.

What I am not sure that you realize is how much it hurts me.  I try not to let it show, not because I want to hide anything from you but because you are so very much like me.  We wear our hearts on our sleeves.  When we see someone bleed, the pain cuts us even deeper. I try to find that balance between letting you know I'm disappointed but not letting you see the pain.

I thought I had everything worked perfectly out. Going on what was written in front of me, I did.  The first volleyball game of the year was while I was in Colorado. There are too many girls on your team to play each game so I asked your coach for you to be one to sit out the first game.  The paper says that if you sit out one game you will play the next.  The calendar was showing 1 game for tonight at 6:30.  We needed to arrive at 5:30 for the group picture (the group picture that your coach amazingly was having re-taken because you were late for the first one due to your brother having a meltdown while I was out of state.  Your coach kinda rocks ;-)  you already knew that).  I've reviewed our plans for tonight with your brother just the right amount of times.  It was good for us to arrive early, he didn't have to walk through a crowd to find a seat, he had time to settle in.  Everything was going perfectly, according to my plan.

My plan, which I soon learned, was not exactly accurate. You had told me, likely more than once, that there would be 2 games tonight. I heard you, I swear I did... I failed at writing it down or worse yet actually letting what that meant sink in so I could better plan.  Instead my mind was focused on the fact that you didn't play the previous game so you would play the first one tonight... not because that's what your coach said but because that is how my mind processes.  When you came across the gym to let me know you would be playing the 2nd game, my heart sank.  Seriously, sank.

Every bit of me knew that I was already pushing your brother's limits with the 6:30 game. Especially after arriving at 5:30.  He should get his meds at 6:30.... we wouldn't be home until 7:30, he's typically in his room laying down watching tv by then.  Knowing the game you would be playing in wouldn't start until around 7:30 brought tears to my eyes that I didn't do the best at fighting back.

I was so angry. I need to be able to plan. I need to be able to prepare your brother. I need to be there for you.  Not because you need  for me to be, although I'd really love to believe that, but because you are my girl - I need to be there for you because I want to be.  I don't want to miss a thing and too often I'm pulled away.  I do my best not to let that happen.

Your coach came over, I let her know that we'd never make it to the 2nd game. I wouldn't get to see you play. I didn't realize there were 2 games.  Even if you telling me had sunk in, my silly - crazy thought process still would have believed you were playing the first game.  Honestly, that does not make sense - sometimes my mind doesn't.

As my heart sank, I wiped away tears while trying to keep your brother engaged in watching the warm ups.  My mind raced as I went through every possible option I had to make this work.  It wouldn't matter.  The reality was it's a school night, his body is dependent on his medicine and his schedule. 7:30 is entirely too far into our evening for him, pushing his meds back til after 8:30 would never work.  Him leaving with someone else would never happen, we both know how attached he is to my hip.

As I tried to accept what would be for the evening and debate with myself how far I would push your brother to stay with a growing crowd your coach walked back over to me.  She told me she was going to put you in for a couple minutes of the first match so I could see you play.  (I told you, she rocks) while it wasn't what I wanted (I wanted to see you play your entire game) it was exactly what I needed and I was (and still am) very grateful. I was able to watch you serve and score a point for your team. I beamed with pride... I'm still beaming.



During the rest of the game, I text friends who were there to find a way home for you.  Your brother was antsy and begging to go.  As soon as the ride was secured, the first game ended and your brother - as predicted - was ready to bolt.

It broke my heart to leave the gym and miss your game. If only I had followed through with what you told me about 2 games tonight, I would have talked to your coach and understood the details and what to expect. I could have dropped you off for pictures and come back (and fingers crossed made it inside the gym) with Parker to watch you play. In all fairness to my mind, that could have failed too - we both know it.  None the less, I will get more details before the next game and be able to better prepare your brother.  Your brother, who - by the way, did a magnificent job of modeling the ref :-)  You would have been amused!

I honestly thought life would be easier. I never imagined at 41 I'd have a 15 year old who would require as much attention as your brother does. As difficult at nights like this can be, I can't imagine life any other way.

I am so very sorry, again, that I let you down.  I am sorry that I watched your game through pictures that other parents posted and updates I was given. I am sorry that I didn't follow up on the details of "2 games" when you told me. I am sorry that I forget that the entire world does not live with the importance of "the schedule" like we do. I am sorry that your brother has Fragile X and has put you in the position of being the little big sister, that you have had to learn to not be able to do everything you may want because it's too much for him to handle, or to leave early, or to walk away from a meltdown while I work him through it.  I know it's not easy. It's not easy to be the little big sister ever.  It's even more difficult when you have Fragile X too and your own set of needs. I wish life was easier while still providing us with the lessons we have learned on this journey thanks to Fragile X.

Thank you, Beth Wells Landry, for the amazing pictures!

Thank you, Beth Wells Landry, for the amazing pictures!

Thank you Beth Wells Landry for the amazing pictures!


I wish I could promise you that I won't miss another thing, that I'll follow up better and plan better - but the reality is, I am human. I will certainly try and do my very best - that I can promise.  I know sometimes even my best will mean things don't go as planned and there will be more I miss out on.  I am incredibly proud of you for finding your place without me physically by your side 24/7.  I pray you know that a part of me is always by your side, always.  I'm always there with you, always proud, always smiling, always with you... even when I'm home putting your brother to bed while you are at the school, on the court about to serve the ball across the net to score another point.

I am sorry I could not stay, while I know you understand - I also know you hide your pain.  You are my child, we are two peas in a pod. I can feel the disappointment.  Sometimes, all I can do is relive the moments as you tell me about them over a Reese's after you get home and remind you how proud I am.

I love you so much.  I'll always keep the Reese's stocked... just in case.

Saturday, January 10, 2015

Time heals...or at least redefines. Working through loss.

They say time heals but I wonder sometimes if it actually heals or simply changes who we are, redefining us giving the illusion of healing while masking the pain we carry.

In September of 2013, a beautiful, bright eyed boy with an incredible smile named Aiden Sullivan went to sleep one night like he had many before only this time, he didn't wake up the next morning.  Like my children, Aiden had Fragile X Syndrome.  His death was quietly mourned by the few who knew him within our Fragile X community and the incredible family that he left behind.  I think of him each night as I tuck my children in bed and kiss their foreheads good night. His parents, especially his mom, crosses my mind as I fight back a tear of guilt that I have this incredible privilege that has been taken from her and heartache knowing she would give anything to kiss her sweet boy and tuck him into bed tonight too.  While I never met Aiden or his family, they forever touched my heart and impacted who I am today. They are always in my prayers.

As I had just come to grips with the loss of Aiden, our Fragile X community was rocked to it's core a few months later, shortly into the new year of 2014 when one cold January morning the news of a house fire in Georgia quickly spread through our community.

Today marks the one year anniversary of the passing of passing of Logan Davenport, this day has weighed heavily on my mind and my heart all day long. Logan also had Fragile X Syndrome.

There is never a day that goes by that I don't think of Logan when I see my children or hear of an experience of another Fragile X family that is similar to one he had faced. While I had never met Logan in person, like many in our Fragile X Community, I have watched him grow up online. I had met his parents and through pictures, experiences and stories shared by his mom, Sheree, his dad, Mickey or his grandma Mickey - our entire community watched him grow up... just as they continue to do with my children.

His mom, Sheree, has always been a voice in our community.  A loud, strong voice with an incredible southern drawl to it - she is after all, a Georgia Peach!  She and Mickey were incredible advocates for Logan. Sheree fought tirelessly for an end to restraints and seclusion for special needs students. Both could be found at the NFXF Advocacy Day in Washington DC, speaking out on behalf of their son and others who needed a voice.

There was never a shortage of stories about Logan or his beautiful sister, Leah.  Leah, a beautiful young lady who loved her brother unconditionally and was often seen in pictures with her arms wrapped around him with smiles beaming from them both.

I know that his family, too, would give anything to have him back in their arms.

I thought that today would be simple for me to acknowledge. To let his family know, just like with Aiden, we will never forget the incredible boy that was taken too soon. It turns out, it hasn't been that simple at all.  To  say something reminds me of how real it is to each of us every day, the pain that continues to live on.

Over the past year, we've continued to acknowledge and share in the memories of both boys on their birthdays.  For Logan, who was very well known in our community, many have changed their profile pictures to honor him today.

I know my heartache pales in comparison to  what their parents and family members go through each day.  And it should.  This isn't about me, it's about 2 families who must continue to go on each day with a significant part of them missing. I can't imagine that pain and pray I never, ever find out. I know the pain as a friend and it cuts deep and hurts unbelievably.

I believe for both boys the one thing I can do is promise their families again that they will never be forgotten, that their spirit lives on in our children, that time is taken every day to appreciate those foreheads we get to kiss goodnight and to hold our children a little tighter, say I love you a few extra times and to always keep their family in our prayers.

Their families will forever be a part of our Fragile X Community.  A community that was forever changed by the loss of both boys.  A community that will never forget. A community that will always embrace and love them. A community that I'm not sure time will heal but instead will help us find strength and redefine how we love and care for those we love most in our lives.

In our children and in our hearts, Aiden and Logan will forever live on. To the incredible families who struggle through each day, I pray you can feel the arms of thousands wrapped around you each day as we hold you tight in our hearts and keep you in our prayers.

The brightest stars are shining down on us as these two incredible boys are watching down on us from Heaven.

Today and every day, please tell the people in your life how very much you love them. No matter the age, no matter if they can reply, no matter the situation... life doesn't always give a heads up when it's about to change, sometimes instead it's quickly taken from our tight grasp.

Make every single moment count. 

Saturday, January 3, 2015

Are we still making resolutions?

2015... it still sounds a bit like a year that should be far, far away in the future to me instead of the year that has just begun. Yes, I feel a bit old just writing that out ... "When I was a kid back in the 70's and walked to school barefoot through 8 feet of snow uphill both ways..." ;-)  But really, 2015 - wow, just wow!


Another New Year is here, another opportunity to watch the great Facebook debate on whether or not people will make New Year's Resolutions. I find the posts rather entertaining to read, I'm amused by my friends who refuse to make resolutions (mostly how adamant they are not to!) and inspired by my friends who do, as I know almost each of them will hold true to the goals they've set.




I guess, for myself, I fall somewhere in the middle.  I just don't see them as resolutions but part of who I have become.

It's amazing how much we change with time, as we grow up and life happens. Life events change and shape us, even when we don't realize it. Who I am today is not who I was yesterday and certainly not who I was a week, a year or years prior.  While I was always told I was an "old soul" and grown up for my age - there is part of me that wishes that growing up I had more of who I am today inside of this mind of mine back then. I wish that for many of the years that have led up to today actually.  While I've done many great and incredible things in my past, I've made more than my share of mistakes there too. It is a little frustrating knowing that who I am today would have never made those same decisions and questions how the me of the past did. I've let many of those weigh me down and have decided it's time to let them go. Our mistakes shape us into the person we are now and while I wish I could have become who I am without making mistakes – that’s honestly an unrealistic expectation of anyone. And, well, I usually make at least one a day still - I just try to keep them small! I point out mistakes I make each day to my children, especially Allison – who, like her mom is incredibly hard on herself. I hope to show her that mistakes are how we learn and become better people. Yet while I've learned from my mistakes and they have helped shape me – I don’t believe it’s where my wisdom and life outlook has come from. That, my children get all of the credit for.

While I wish I could say I am resolving to never make another mistake that would be setting me up to fail before I even finish typing this blog. I’m entirely too realistic to make such a resolution.

The truth of the matter is if I were to make a resolution, it would be in line with the goal I have and remind myself of twice each day; when I wake up and again before I go to bed – I simply want to be a better person today than I was yesterday, or tomorrow than I have been today.

It’s not just about what I want to accomplish in life but much more about healing and becoming who I want to be on the inside. I believe this is part of our life purpose, at least it is mine, to discover in my heart who I truly am and become that person. It is, and should be, a lifelong journey of discovery filled with pride and surprise.

Each day I am reminded I only have one chance at this life, I never want to take that for granted. Every day that I have is an opportunity to make a difference, to be kinder, more compassionate, a better daughter, sister, friend and most important to me – a better mom. I have many fears in life including letting people down but it’s my children I fear letting down most of all. I want them to not only look back on their childhood as a time of wonderful memories and experiences but also a time of learning; understanding life lessons and the importance of living each moment. I guess, we could say, I resolve to improve upon being a better person each day this year.

I am, by nature, a “fixer” or “helper”. I pray that never changes about me. As I see the world around me through my eyes, I know there are people I can help and situations I can fix. I am not good about looking the other way or ignoring a situation that needs help. It gives me purpose each day and that is important to me.  At times it leads me to feel spread too thin but other times it’s energizing to me and I know there is so much more I can and want to do. I guess, we could say, I resolve to help more this year.

What may be most important this year is that I understand the need to take better care of me.  I tend to overlook that in my desire to save the world. At times, I over extend myself as an attempt to combat my depression – which overwhelms me more than anyone (other than M) would ever know. I’m beginning to realize that may not be the best approach as I find myself facing increased panic attacks and with tears streaming down my face even when I feel most at peace and happy. Depression is indeed a complicated bitch.

I am wonderful at making lists; looking through my pile of them I've noticed a theme.  Almost each of them contains a topic for me to write about.  Something important to me, words in my mind that I need to type out and want to share.  While confiding in M recently I expressed how I wish I could escape for a few days just to write.  Writing is incredibly healing for me. I love that it helps others understand they are not alone in this crazy journey we are on in life. It also helps me, to find peace and center myself. M is correct, as usual, I need to making writing a priority “me time” even if just a few minutes or an hour each day but not at the sacrifice of the sleep I’m already not getting. I guess, we could say I resolve to re-prioritize to put myself a little higher on the priority list in life.

As I work to be a better version of me each day, I've found incredible happiness.  2014 was a pretty good year for me. While it came with uncertainty, sadness and new challenges, it also came with an immense sense of peace and incredible pride in my accomplishments and growth. (*I think this is what frustrates me most about the struggle with depression and that many don’t understand – is while I am happy and in a good place, my depression still has an incredibly firm grip, incredibly firm grip.)

I've made tremendous gains in my independence and confidence. I've taken on new challenges and learned new skills. I've even managed to surprise myself which reminds me that as “set” in my ways as I believe I am – I still have a lot to learn, even about myself.  That’s a great reminder and wonderful surprise. It’s not just about what more I can learn about our world but also about me; the me who isn't guarded and stubborn, the me who isn't afraid to take a chance – or at least consider taking a chance, the me who laughs without worry and let's people in. 

There is a lot to learn there and once again it was my children who opened my eyes to it.  They really do get the credit for the very best things in my life.  Thanks to them, I step back and see things about the world – and myself – that I otherwise would not see.  The world through their eyes is really an incredible place; a world of hope, a world of endless possibilities, a world of love. It took stopping, listening, hearing and really understanding what they could see to get me to see it myself. Once again, they have changed me for the better, taking me from the very insistent, independent woman who was set on “never” to creating a private Pinterest board filled with wedding dreams of a “forever”.

I guess, we could say, I resolve to never say never.

Life is short, tomorrow is never promised. At almost 41 I attend more funerals than weddings – a part of life I just didn't anticipate happening, it’s not what you think of when you dream of growing up.  It’s the crappy part everyone leaves out – that as you grow up, those around you grow older too and losing them is something you simply cannot prevent. It’s left me with an incredible appreciation for every single day.  A fear of how much time I may have left and the overwhelming need to accomplish so much more before that time that I have no control over comes. Most of all, it’s left me with the reminder to stop and live today and encourage others to do the same.  Do you have a dream?  Reach for it. Do you have something to say? Scream it. Do you have bridges to rebuild? Start building. Whatever it is that you are holding tightly inside of you out of anxiety, fear or habit – let it out, let it go. Make each day matter. Love strongly. Live respectfully. Become the person you know is inside you and bring out the beauty and best in others. It’s only too late when we are no longer here and if you are reading this, it’s clearly not too late.


I guess, if I were to say I have a resolution this year it would be – to be brave, dig deep and find it within me to say the things I've kept inside. To continue to love unconditionally, to be a better mom, daughter, sister, friend, person, to hold onto hope, to not be afraid to dream, to keep doing my part to make our world a better place, to always celebrate inch stones as incredibly as the milestones, to remember there’s a lot left to learn about myself and finally, to stop being afraid of falling in love.

While it's quite a resolution, it's more of my daily promise to myself. Not just for this year but for every year I have the privilege to be here on earth. It's a life change that started many years ago and continues to evolve, smoothing out the rough edges and always working to improve the redefinition of itself. I am, after all, a work in progress. 

My very best wishes to everyone for the most fantastic year (and years) ahead. It’s never too late to start a new goal or dream… or to make it come true. 


Believe in yourself ~ I certainly believe in you.