What Hurricane Irma Taught Me

The past few weeks have been a whirlwind of one thing compounding on top of other things; what we didn’t expect was to have Hurricane Irma on top of us wreaking havoc even a week before she got here.  That was one crazy storm.  She shifted directions more times than Hannah changes socks in a day (and that is a lot people….a whole lot).  I won’t even try to go over with you all the different changes in direction that stupid Hurricane did, but needless to say about a week prior people (including me) started to panic slightly and preparations were made to get ready just in case we got hit.

We got hit pretty hard and in all honesty I don’t care to ride another one out.  Moments  (especially between the hours of 2am-4:30am) on Monday morning were pretty scary for me.  You could hear the rain hit the windows and the wind howling through the trees.  We were at my brother’s house (which was safer than our house due to all of our tree coverage) but it was still scary.  Dennis was working and Hannah kept saying “rain scary mama, rain scary.”  Needless to say, little sleep occurred that night.  The next day I waited to hear from Dennis when he got off work, as he was heading straight to our home to assess the damage.  Fortunately for us, we had no damage to our home.  We did have a few small trees down, TONS of debris and limbs but we were so blessed as none of our big trees were uprooted.  Our flooding was not as severe as many areas of town and that was a blessing as well.  Some of our neighbors didn’t fare as well though.  A tornado touched down in our neighborhood Monday morning at 4am and ripped through several of our neighbors yards and one neighbor had 3 huge trees uprooted and landed on their home.  Fortunately, no one was hurt.  Our whole neighborhood looked like a war zone though.  We had no power, no cable, no internet, no phone service and we were told it would be 7-10 days for restoration so Hannah, Dennis and I packed up and headed to my parents where we spent 2 nights until we heard from our neighbors that our power had been restored.  We came home Thursday and began the clean-up process.  First up, our refrigerator!  Eeewwwwww!  Dennis had made sure he got to the house several times to run our generator for our freezers so at least we kept all of that food but the fridge just had to be cleaned out and we had to start over.  But, compared to what it could have been that loss was minimal.

It has been a LONG week but Irma taught me a few things and I thought I would share those things with you now (since I can blog again as we just got our internet back today):

  • FAMILY…..how important family is.  Dennis’ and my families all rode the storm out safely and I am incredibly thankful for that.  My brother and his family took us in for 2 nights and my parents took us in for 2 nights.  They fed us, gave us a clean, cool place to stay and that time with all of them was invaluable.  Games, laughter, HELP with Hannah (LOL) since Dennis worked the majority of the time.  I wasn’t alone, in a storm with a child who has many special needs.  I am thankful.  My family came through for me in my time of need.  So very blessed.
  • NEIGHBORS…..can I just tell you how wonderful our neighbors are for a second?  Offers of a place to stay.  Texting and lots of communication before, during and after the storm.  Help cleaning up our yard.  Offers of food and anything else we might need.  Amazing neighbors, amazing neighborhood, amazing friends……
  • Facebook Friends…..far and wide who care and checked in on me!  So thankful for you all!  Friends in other states who were so concerned and even offered Hannah and I places to stay (next time I am taking one of you up on your offer)!  Oh who will the lucky one be?!?  LOL!
  • Modern day conveniences…..let’s be honest I have never lived in a time where we didn’t have electricity but WOW…..life without it is so very hard.  I am quite convinced I wouldn’t survive in a world with no electricity.  We live in the “country” and we have a well and septic tank; which is good as we don’t pay for city water, but bad because when you lose electricity, you lose your water!  So no power means no water for us…..NOT GOOD, especially if you have to use the potty!  LOL!  Internet, Cable, Phones…..not necessarily “necessities” but in our day and age a day without those things is quite strange.  I did okay because I knew that it would come on eventually but we don’t get great cell reception at our home so my fear was if something happened it would be hard to get in touch with someone.  You feel totally cut off from the world.  In fact, just today I saw there are 3 more storms in the Atlantic….Jesus take the wheel and make those storms make a u-turn please!
  • Food…….if you want good food when in a hurricane, go to my brother’s house…..we dined on pork, ribs, chicken, mac-in-cheese, broccoli casserole, baked beans, chips and dip, cake…..well, let’s just say, none of us went hungry!
  • Working in the yard is not that bad……yes, after 16 years of marriage Dennis saw me work in the yard for the very first time (I am pretty sure he took a picture to document it).  I busted my booty yesterday (and feel it today) for 5 hours.  Then today, I washed my car…..who am I?
  • I love playing games…..Skipbo, Uno, Spades……had so much fun playing games.  I had forgotten there were games besides those on my iPad that you could play.  Time with family was awesome!
  • Sharknado is a hysterical movie that everyone should watch!  Yes, we watched it before we lost power on Sunday night…..so ridiculously funny.  Made you forget a hurricane was on the way and when it hit, I looked up for sharks!  LOL!
  • Always take a potty seat with you to other people’s homes…..when your 12-year-old child’s hiney is so tiny big people potty’s are not fun!  Important lesson learned here…….
  • Invest in a blow up mattress……thankful my sister-in-law had one.  I will be buying one soon!
  • Always have bottled water stashed in your home (2-3 cases).  If another storm comes through you won’t have to go to 24 different stores in search for some (thankful for my neighbor who found cases and bought me 3).
  • Always have a supply of non-perishable snacks…..
  • Keep your phones, computer and important things backed up so you don’t run around like a crazy woman doing it the day before the storm hits!
  • NEVER run out of Vasayo Sleep, Neuro, Core Essentials, Energy or Renew…..you will thank me for this!  Always have a back-up supply!
  • Hurricanes are scary, tornados are scary….I don’t want to go through another one….but you know what the most important lesson I learned was?  It was even though I was scared…..even though I didn’t know if I would have a home to go come back to…..I knew my God was bigger than any storm.  I knew that He would protect us and no matter what happened HE had a plan.  It boils down to FAITH…..my faith grew a little stronger….my hope got a little bigger and my strength and resilience, although tested, is stronger  than I thought.  I serve a loving, gracious, merciful God  who taught me that He is indeed bigger than any storm and reminded me that NO MATTER what trials or tribulations we have here on earth we have Heaven to look forward to for eternity.

A few pictures of our Hurricane Adventures……I didn’t take a lot of our yard…….just picture piles and piles and piles of limbs, debris and trees!  UGH!

Kissing daddy goodbye last Sunday night as he headed out to work. Aunt Ra-Ra read about 40 books to my girl, which made her very happy!

 

Hannah and Bam-Bam, my brother’s cat….he has 3 cats but Bam-Bam was the only one who tolerated Hannah well.

 

Night-night Bam-Bam!

 

Hannah and Simon (my parents cat).

 

Dad and Simon….very happy because we were gone! HA! My mom texted this picture to me to show me that dad and Simon were not really missing us! HA!

 

Our backyard……some of our mess, post-Irma

 

Until next time……..

 

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A Grateful Heart and Searching For Specialists

I will be the first to admit that I often times don’t have a grateful heart.  I allow the struggles and pressures of our life to weigh heavy on me and I squash the gratefulness way down deep in my heart and “forget” how blessed I really am.  The past month or so I have not been as grateful as I should be and Hannah of all people reminded me of that yesterday.

You see, she is struggling…..each moment is a different emotion or a physical problem.  She might be sad one minute, anxious the next and then manic or happy.  She might be nauseous, have a headache or tummy ache, she might be dizzy or about to pass out.  Each minute of every day lately has been something different…..things leaving us scratching our heads as to why.  No energy, lethargy and pallor are always there……our Pediatrician is working so hard to figure it all out but she needs a few of our Specialists to help her; which they are NOT doing.  In fact, last week we were told by our Immunologist that he could no longer help Hannah.  That she needed a doctor better equipped for her needs.  Now, I will admit when I first heard that I was angry that yet another doctor was pawning us off; but I should have had a heart of gratitude instead.  I should have thought “well at least he recognizes that he cannot help her and he is willing to admit that and help us see someone he thinks can help.”  You see though, I am skeptical of doctors…..we have some really great ones, but we have had a few really arrogant, bad ones (with major God complexes) and after 2-3 like that you get paranoid.  I question why some doctors refuse to help Hannah.  Is it because of the Press Ganey Score that they don’t want to mess up?  They want to keep their rate of success higher than their failures so they don’t want to take complex cases like Hannah on?  Is it because they truly just don’t care because Hannah has Down Syndrome?  Is it because they truly do believe that all of her issues are due to the fact that she has Down Syndrome?  Is it legit?  Should I just chalk all of her issues up to that extra chromosome?  Am I being unreasonable to think that there is a doctor out there that can help her?  Is it a fact that no matter what Specialist we see that we will continue to get the same answers of  “I am unequipped to help your child, you need to find a doctor who can.”  We have been told we now need to travel to see Immunology/Rheumatolgy, Genetics and most likely ANOTHER new Neurologist (that would be our 6th one).  We have been told to go to Atlanta, Miami, Tampa or Mayo in Rochester.  The plus side of Mayo is seeing all the doctors we need to see in one location.  If we go the other route, there will be 2 doctors in Atlanta and at least 1 perhaps 2 doctors in Miami (I have already ruled Tampa out).  The bad thing is no matter where we want to go or decide to go, our Pediatrician here has to send a referral letter on our behalf plus all the clinical notes to the Specialists.  The Specialists will then look over those and decide if they will see us.  So, the fact is we might not even get to see the doctors we choose because they might even tell us no.  So frustrating.  So hard.  So easy to be ungrateful and lose hope.

Yesterday Hannah was so appreciative of everything….she actually always is but I really took notice yesterday.  Everything I do for her she responds with “thank you so very much” or “Oh mommy thank you, I love you so much all my heart.”  I mean what kid does that after everything you do for them.  Every time I clean her bathroom I hear “thank you so much clean bathroom mommy, I love it.”  When I serve her a meal no matter what I serve she says “thank you I just love ________” (insert whatever she just ate).  I can buy her a new toy, book, article of clothing (even new panties) and she will say thank you and give me a big hug.  She truly has the most grateful heart of anyone I know and it puts me to shame.

I don’t say thank you like I should, especially to my Heavenly Father.  I should say “thank you for allowing these Specialists to see that they can’t help Hannah, please lead us to the ones who can.”  I should look at each closed-door as a blessing instead of another complication or burden.  I should be grateful for a doctor who “gives up on us” because that is another opportunity to find a doctor that can truly help us.  That is so hard though when you are so mentally, physically and emotionally exhausted.  I am just so tired…..everything has been a fight since Hannah was born.  But, what I am still trying to learn and get through my thick skull is that I only need to be still and let God fight for us.  I need to do my due diligence but allow God to bring the right doctors and Specialists into our life that can help Hannah.  I need to allow Him to work and perhaps if I have more of a grateful heart instead of an angry and sad heart, perhaps He could work better with that.  I am trying to have a heart change……it is so difficult when you have watched your child suffer for so long; but I know I have to change my attitude, shake off the bitterness that has built up and just let God do what He does best……fix my mess!  I know nothing in this world happens that He doesn’t allow.  I am a firm believer that things happen for a reason and perhaps everything we are going through is so God can reveal Himself in a BIG way to someone that needs Him.  I don’t know the reason but I know that I need a heart change…….it starts with gratefulness.

Give thanks with a grateful heart
Give thanks to the Holy One
Give thanks because He’s given Jesus Christ, His Son

Give thanks with a grateful heart
Give thanks to the Holy One
Give thanks because He’s given Jesus Christ, His Son

And now let the weak say, “I am strong”
Let the poor say, “I am rich
Because of what the Lord has done for us”

By:  Don Moen

Until next time…..

 

 

I Miss You, My Friend

Dear Angie,

I sure do miss you.  I think about you daily but the past week or so I haven’t been able to get you off of my mind.  Perhaps it was because last Friday would have been your 45th birthday or because I knew school was starting back soon and I know you would have been going back to doing your favorite thing, with your favorite teacher friends; investing in the lives of so many blessed children who had you as a teacher.  Perhaps it is because I am struggling so much lately and I know all I had to do was pick up the phone and you would have been there with an encouraging word, God’s truth, a kick in my hiney (lovingly of course), a night out for dinner to chat…..you would have helped me understand my hurt and let it go.  You would have offered to help me with Hannah and you would have most assuredly stopped by Sonny’s BBQ and brought us dinner (you never failed to minister to us in that way).  You and I always had food readily accessible for each other.

But, instead I have to write you this letter in my blog that you will never see.  Is that dumb?  Perhaps most will think it is but I can’t communicate with you any other way.  When the Lord saw fit to take you home nearly 5 years ago it shattered my heart.  I lost my best friend of 40 years……40 years Ang…..how blessed was I?  I had you in my life for 40 years!  Some people never have friendships that last that long but we did and those are memories no one can ever take away from me.

Hannah isn’t doing very well right now.  Who knows, maybe you already know that.  My heart hurts.  I want more for her than this life she has been dealt and my heart breaks every.single.day.  Not to mention mean people and especially those who call themselves Christians.  Heck, if I weren’t a Christian I could see how people could be turned away because of the way people act.  Thankfully, that isn’t an issue as I know “Christianity” isn’t to blame, human nature (and the devil) are.

I pray for your family everyday.  You should see your kids Ang, they are doing so well.  Kaylee is so beautiful, kind and compassionate and the boys they are so full of personality and so very handsome.  Julie loves them Angie…..she truly does.  I don’t get to see your mom and dad, Wally or his family often but I pray for them all daily.  I know their hearts ache….I just know mine does so I cannot imagine their hurt and longing to see you.

Thank goodness for the hope we have in Christ…..I mean, one day there will be this grand reunion in Heaven and I sure do hope I get to be somewhere in the front of the line to hug your neck!  I have so much I want to tell you.  So much I wish I had told you before the Lord called you home.  I never really verbalized how much you meant to me.  I hope you knew.  I mean, I told you I loved you but if you only knew the times you literally saved me because you never held back and you always spoke to me with wisdom and love.  I will never forget the day I called you bawling my eyes out and told you Hannah was going to be “different.”  Your response to me was, “well we are all different but she is going to be special and God chose you.  Tamara, what an honor, what a privilege, that HE chose you out of everyone.  You get to mother one of His special children.  I am so proud of you and the mom you are going to be.”  Oh Angie, I remember that day and I remember those words…….geez, if you could see the tears streaming down my face right now…..I can hear your voice.  See, you are still there…..always will be; forever in my heart.

I just wanted you to know you were so greatly missed by me and so many other people.  I long for Heaven to see you!  Until then my friend……I just needed you to know you are loved and always missed.

Me, Misti and Angie…..dear friends!

 

Throwback to the early 90’s! Friends forever!

 

Left to right:
me, Angie, Whitney and Misti….love you girls!

Until next time………

 

An Island Unto Myself and Rise Up

So, I have been told by a few people that I am MIA…..it is true.  I have withdrawn the past couple of weeks to my safe place.  The place in my life where my defenses have sky-rocketed and my walls have been built due to the criticism from others.  But, what no one knows are the new medical issues that Hannah has been dealing with that Dennis and I wish to keep to ourselves right now.  There is so much going on that I cannot even process it all and frankly we have more questions than answers once again regarding Hannah’s health and it does no good to speculate or guess or try to explain all that is going on.  Let me just say we are dealing with her heart, kidneys and some sort of autoimmune issue/disease that we haven’t been able to pin point as of yet.  She is in the process of just this past Friday starting to wear a 30-day heart monitor and we have doctor appointments like crazy scheduled in the next 4-6 weeks.  So, as Dennis says, “we will hurry up and wait.”

For me, when I get overwhelmed like this and due to the harsh criticism I have received from people, I tend to shut down, build my walls and isolate myself.  So, for those who are wondering that is the place I am in right now.  No one understands and frankly I don’t expect people to.  Am I angry?  Yes, I am.  Do I wish things were different for my little girl?  Absolutely!  Am I scared?  Yep, more than I can  put into words.  I am feeling so many different emotions including, sadness, worry, anxiety, anger, resentment….yep, feeling it all.  But, you know what…..I am woman enough to say it, own it and work on it.  Instead of sitting there pointing fingers and criticizing others I am working on me.  I am not blaming others for my challenges.  I am not telling others how they should handle their problems and I am not making other people’s problems and issues about me.  Am I perfect…NO!  I have never claimed to be.  What I am is a mom who would give her life to save her child or spare her any more pain/surgery/heartache/anxiety/fear…..I cannot fix this and that is hard!

From the moment Hannah was conceived she was sick.  From 3 open-heart surgeries, immune deficiency, PANDAS (which lets be honest literally has sucked the life out of my family), T-cell deficiency, low vitamins, minerals and electrolytes, seizures, lethargy, syncope episodes, malabsorption issues, gastritis, anemia, hypothyroidism, oh geez, I could keep typing her list of diagnosis’ all freaking day long.  The point is this…..life has been HARD and if you think for one single moment that you can do this better than me, then I extend you the offer to come and try.  Come walk one dang day in my shoes and see if you can handle it.  If you can, then criticize away.  I am so sick and tired of people who have NO clue what my little girl, my husband or I have gone through thinking that they can say or do anything and get away with it.  Call me negative, call me selfish, call me any name in the book but until  you have walked one single day in my shoes……you and your opinions hold NO weight with me!  I am sitting here typing this and it just hit me……I have allowed a few people to make me create this island unto myself.  I have allowed people and their opinions of me and my parenting skills (or lack thereof, in their words) force me into building walls and predominately staying off of social media to protect myself from anymore hurt.  I have enough stress and hurt in my life (that truly matters) than to allow one more person to try to tear me down and destroy me.

I knew this would happen…..I have fought sitting down and typing my thoughts because I knew I would explode.  This has built up in me for over 2 weeks now.  Of course, it is Sunday and it is my most dreaded day of the week so here we are.  Right now, my ONLY concern is Hannah and taking care of her, figuring out what is going on in her little body and praying like I have never prayed before for conclusive testing, doctors’ wisdom, medical guidance and direction and answers to all the issues happening now.  So, for me to spend one more moment on the “opinions of others” is counter-productive for me.  If you wonder where I am, I am taking care of Hannah.  Again, when we have more conclusive answers I will share more, but until then, please just pray for us….for her.  If you want to offer hope and encouragement, I welcome it.  If you want to criticize, keep it to yourself…….

This song has become one of my favorites the past couple of weeks……Rise Up by Andra Day.  Here are the lyrics (of course if you go to YouTube and listen to it, her voice is amazing):

You’re broken down and tired
Of living life on a merry-go-round
And you can’t find the fighter
But I see it in you so we gonna walk it out
And move mountains
We gonna walk it out
And move mountains

And I’ll rise up
I’ll rise like the day
I’ll rise up
I’ll rise unafraid
I’ll rise up
And I’ll do it a thousand times again
And I’ll rise up
High like the waves
I’ll rise up
In spite of the ache
I’ll rise up
And I’ll do it a thousands times again
For you

When the silence isn’t quiet
And it feels like it’s getting hard to breathe
And I know you feel like dying
But I promise we’ll take the world to its feet
And move mountains
We gonna walk it out
And move mountains
And I’ll rise up
I’ll rise like the day
I’ll rise up
I’ll rise unafraid
I’ll rise up
And I’ll do it a thousand times again
For you

All we need, all we need is hope
And for that we have each other
And for that we have each other
We will rise
We will rise
We’ll rise, ohh ohhh
We’ll rise

I’ll rise up
Rise like the day
I’ll rise up
In spite of the ache
I will rise a thousand times again
And we’ll rise up
Rise like the waves
We’ll rise up
In spite of the ache
We’ll rise up
And we’ll do it a thousands times again
For you

So, with that said, I will rise up; I will rise up unafraid and in spite of the ache and I will do it a thousand plus times again.  You can knock me down but getting back up is my specialty……so, for those wondering…..right now I am focusing on Hannah; my heart, my love, my priority.

On a positive note……Vasayo is still our “miracle” and Hannah is sleeping 12-13 hours each night and as far as her PANDAS symptoms she is so very much improved!  I am thanking God for that…..He brought Vasayo into our life knowing we would be able to use it and have some relief from the horrific insomnia and other PANDAS symptoms knowing full well we would be walking this new complicated medical journey with Hannah.  So, I give God the glory for Vasayo, our Vasayo family, our products and yes, I am still in the business…….just prioritizing Hannah first…..as I ALWAYS have and will ALWAYS do.

Until next time……..

Where Have the Years Gone

Twelve years…..twelve years ago today at 6:29am to be exact I became a mom.  Wow, how fast time flies……it seems like yesterday in so many ways as I remember that day so vividly.  Here we are twelve years later, having weathered many storms, celebrating the little girl who we were told would not survive birth.  Here we are celebrating another year of life when throughout my entire pregnancy we were told she wouldn’t make it home from the hospital even if she was able to survive birth.  Where have the years gone?  They have gone by so fast and yet so slow at the same time.

Today, we celebrate a little girl whose eyes sparkle like the stars.  Whose laughter infiltrates joy into our soul.  Whose smile melts our hearts.  A little girl who although 12 years of age is still very much a young child (which trust me can be really good and really bad all at the same time).  Her innocence, oh the innocence of childhood is still there.  She sees the world and people through rose-colored glasses; never seeing evil, harm or danger.  She looks at everyone like they are her friend, she knows no hate.  There is so much about that I am thankful for.  There are some things about this that are difficult as well……I truly do still have a “toddler” in so many ways and she definitely has a mischievous side to her, which I have to watch closely!  But, she is the smile in my heart and the joy in my soul.  She has taught me so much, so much I would never have learned had it not been for her.  I have learned to be humble, kind, to put others first and to forgive.  I have learned to let things that don’t matter fall to the wayside and cling to those things that truly do.  I have learned that there is always something to be thankful for, even in the most difficult of days.  I have learned to notice others pain, heartaches and challenges and validate their feelings.  I have learned that even when all seems hopeless, it isn’t.  I have learned that you will have bad days but joy comes in the morning and that no one and nothing is more important than what is in your four walls.  I have learned it is okay not to be okay and that through suffering God comforts us so that one day we might comfort others enduring difficult days.  I could go on and on but you get the picture.  Today I celebrate another year that we were told we would not have.  Today we celebrate the most amazing little girl who stole our hearts 12 years ago.  A little girl who captivated us then and still does today.  Today, we celebrate Hannah, my greatest gift and biggest blessing.

Hannah, you are so full of personality.  You love Andy Griffith and watch the same episodes over and over and over again; laughing hysterically.  You love all genres of music but especially Southern Gospel (The Gaither Vocal Band and Sandi Patti) and Country (Carrie Underwood and Toby Keith) among others.  You love Rock too and have jammed many times to “Port Chuck” and their remakes of 80’s rock and Emily Reeves too.  You love Charles Billingsley and Evidence.  Your favorite foods are spaghetti with pesto sauce, green beans, acorn squash and ANYTHING sweet (especially “vanilla white ice cream” as you call it) and chocolate popcorn (thanks to Mike and Allison Delaney).  You love bacon more than anyone I know (this is new and you want it every morning for breakfast).  You love to read books and flashcards, play Barbies, play doctor (and your favorite patients are real life people).  You think anyone who comes over needs a check-up and has “broken knee caps.”  HA!  You LOVE Lyndsay Simmons like she is your sister and Mrs. Coppedge (Simons) too.  Your speech therapist, Mrs. Deb is one of your favorite people on the planet and you always look forward to their weekly visits; as does mommy because they are real and dear friends to me.  You know every different text tone on my phone and who it belongs to especially Unc, Dr. Kim and daddy!  You love police officers and your favorite thing to do is go visit “Mr. Steve” in his office at the FOP.  You adore “Mr. Eddie” our neighbor who is a motorcycle cop and every time you hear his motor you say, “I love you Mr. Eddie.”  You are content to play all day in your playroom and enjoy picnic lunches on a beach towel on your playroom floor.  You ask daily to go to “Uncle Bill and Aunt Adrienne’s house” because you want to swim in the pool and you love Aunt Adrienne’s cooking (I mean, who doesn’t)?!  You tell me daily that “fevers go away, feel much better, Hannah back to school, Hannah back to church,” and my heart breaks just a little when you tell me that each day.  That is my prayer sweet girl…..one day, Lord willing, you will be all well and be able to go back to school and back to church too.  Until then, I am so thankful for this time that I get to spend with you (even though there are days I need a break and if truth be told you need a break from me).  You are my best friend, my greatest teacher, my every heartbeat, my motivation to keep going and my greatest joy.  No matter how difficult some days are for us both there is nothing better than waking up every  morning to your sweet voice, big hugs and kisses.  I will forever cherish you, love you and take care of you.  God has something special in store for your little life and I am so thankful I was chosen to be your mom.  Happy Birthday baby girl…..I cannot believe you are 12 years old……where have the years gone?

 

Until next time………

My Journey……My Shoes

If you are a friend of mine whether personally or on Social Media you know by now that I share it all.  The good, the bad, the ugly, the indifferent, the happy, the sad….well, you get the picture.  That is just who I am.  I am on a much different journey than most people I know and there is little that I don’t share (although trust me, there are things I don’t, believe it or not).  This is MY journey.  These are MY shoes in which I am walking.  I am not on your journey or in your shoes and you aren’t on my journey or in my shoes.  With that said I would NEVER begin to fathom something I have never experienced.  I would NEVER say to someone how horrible their feelings are or how I would do things differently.  I would NEVER in a million years criticize anyone for how they handle their particular journey.  Do I always handle my circumstances perfectly, HECK NO!  There are days (many of them actually) that I fail miserably in my life.  There are days where I am barely able to put one foot in front of the other (by the grace of God I always manage but it isn’t always easy).  There are days when I want my circumstances to change, where I wish for a different journey or “gasp” perhaps the ability to walk in someone else’s shoes (because it looks better from the outside looking in).  The fact is, I am not perfect and I have never claimed to be but what I am is this:

  • A mother who LOVES her little girl more than anything
  • A mother who will walk this journey I have been given until the day I die
  • A mother who sheds tears and yes, at times, needs encouragement
  • A woman who rarely gets out and has “socialization” with friends
  • A woman who is by nature an extrovert (so you can imagine how difficult the above bullet point might be for me)
  • A wife who fails miserably most days (ask Dennis he will probably confirm this) but it isn’t from lack of trying to do it all
  • A Christian who prays, reads her Bible and has shed many tears for others, for my child, for my husband, and for my family and friends
  • A Christian woman who knows beyond a shadow of a doubt that although this earthly journey is difficult and the road I am traveling is long and hard at times that one day Heaven is going to heal all those hurts, pain and scars that I have.
  • A woman, wife, mother and Christian with FEELINGS THAT MATTER AND DESERVE VALIDATION INSTEAD OF CRITICISM.  A heartbroken, sinful, often times sad and lonely woman who never intends to hurt others but shares from the heart so others might see they aren’t alone

The above bullet points are who I am…..good, bad, ugly…..I share it all.  I guess there are people in this world that only want to hear about unicorns, rainbows and flowers and you know what, that is okay.  BUT, that is not who I am…..my life is not rainbows, unicorns and flowers….don’t get me wrong, I have been blessed with so much and God continues to bless me far more than I deserve, but on a daily basis my life is a rollercoaster of emotions, feelings and frustrations.  I would venture to say that most people are like me….all on different journeys, doing the best they can walking in their own shoes.  Some people though choose not to reveal it all and that is okay.  Some, like me talk about it all and you know what?  That is okay too.  There is no right or wrong here. How you choose to walk in your shoes on your particular journey is YOUR CHOICE but BE KIND ALWAYS.  You have no clue the heartache, heartbreak, loneliness or sadness someone feels.  Even those people (like me) who reveal their heartaches, you will never know the depth of it.  Everyone has a journey……in fact, you might be the person who will either encourage them on that journey or be the one that pushes them over the edge causing them to never be able to climb out of the pit.  Remember that……be kind……if you can’t, please remove yourself from that person’s world…..you will be doing both of you a favor.

My heart hurts most days but I always rise above it.  I am thankful for my army of friends, encouragers, supporters and prayer warriors.  Life is too short to be unkind to anyone.  We all have this one life to live……live it in love; loving yourself and loving others.

Until next time…….

 

Today My Heart Shattered

Today my heart shattered.  It may have something to do with the decline I have noticed in Hannah over the past week or two.  A slow, yet steady decline that we thought was (hopefully) just hiccups along the road and this journey we call PANDAS.  Last night, I realized…..yeah, this isn’t just a “hiccup,” but to spare you all the details I won’t divulge exactly why and how I came to that determination.  Let’s just say it was crystal clear to me.  Then, upon waking this morning a full-blown PANDAS flare hit me (almost literally) dead in the face.  To say I am surprised would be a lie; heartbroken is more the word and then later on this morning my heart literally shattered.

I am thankful for a Pediatrician who is a dear friend who understands this journey we are on and does every thing in her power to make this as easy as possible for me to cope with it.  At least, like many other parents, I don’t have to fight our doctor to understand or get things done and I am so very thankful for that blessing.  So many PANDAS families are struggling just to get doctors to treat their child.  Hannah has an infection.  We think it started in her kidneys and now it has caused the inflammation in her brain to spike and go haywire.  She is in a PANDAS flare all because of some bacteria/germ/infection.  Now before I “hear” it from some insensitive person about Vasayo, let me say this.  Vasayo never claims to heal anyone and I never claimed that any of Vasayo’s products would heal Hannah.  I have stated that they have helped her symptoms tremendously and from what I can tell with this flare so far they are continuing to make the symptoms less and contain them.  There is NO product on the market that will keep Hannah from flaring. IF there were, I would be a millionaire right now from selling it.  But, our products can help and are helping to offset the horrific symptoms of a flare.  As of right now, I know for a fact that the insomnia has not come back and the Renew is definitely helping to lessen the inflammation.  This definitely isn’t our worst flare ever and for that I am so very thankful.  A flare is a flare though and mild, moderate or severe they are no fun, hard, heartbreaking and frustrating for those living it.

I had to go to Publix this morning to pick up a new antibiotic for Hannah and this is when my heart shattered.  I picked up the prescription and as I was leaving the store I noticed a woman (probably my age) and her daughter (probably 12-14 years of age).  They were laughing as they were walking into the store and it hit me……it hit me hard.  I will never have that.  I will never have the mother/daughter bond where we laugh, carry on conversations, shop together, get mani’s and pedi’s, go on road trips, go to the movies, etc.  I have thought about that many times but this morning it hit me hard and I literally (no lie) felt my heart physically shatter.  It almost knocked the breath out of me.  Hannah will be 12 years old this month and it was almost like those hopes and dreams died all over again this morning.  I don’t know why it hit me so hard other than we are entering another flare and I don’t know how long this one will last (and it doesn’t help that I am out of my Vasayo Neuro which balances my mood and lowers my anxiety).  I feel it creeping up in me…..the anxiety, the depression, the wanting to scream because you can’t fix it or make it okay.  I hate watching Hannah suffer.  Today, she cried for a while and then bit her lip.  Then the biting became something she was fixated on (hello horrific OCD, the unwelcome guest) and even though it hurt, she kept doing it and wouldn’t stop.  Her brain wouldn’t let her stop.  No matter how much I cried and pleaded with her, she bit it more until it was bleeding and swollen.  Oh my heart aches.

PANDAS, if you don’t know about it, you can read throughout my blog more about it or of course google it.  But, it is a horrific, terrible, mind-altering disease.  I swear, I can’t even look at a Panda Bear anymore without getting angry (and I know it isn’t the bears fault, HA).  So, here we go…..another flare but this time with our Vasayo products to help us through it.  I believe with all I have they are going to help Hannah in the flare as much as they have out of a flare.  I guess there is nothing like putting products to the test……so, I promise to give you an update on how our Vasayo products work in a flare since this is our first flare since starting the products with Hannah.

Would y’all pray for us?  Pray for Hannah……please?

 

Until next time………..