Whispers In Your Ear…….When God and Satan Collide

Has it ever happened to you?  That voice in your head that reminds you of your past mistakes or the what-could-have-been or tells you that you aren’t pretty enough, good enough or worthy enough?  That voice that is a reminder of all the things you wish were different?  That voice that always pops up when you are the most exhausted, worried or stressed?  That voice that breaks your heart into a million pieces….that my friends is the voice of Satan whispering in your ear.

He whispered in mine last night.  He showed me what life would be like if Hannah was well and was “typically developed.”  As I watched her fall asleep tears fell down my face.  Don’t get me wrong I LOVE that little girl with my whole being but sometimes, in my weakest and most fragile moments, the evil one whispers in my ear and makes things worse.  He told me that if Hannah was healthy she wouldn’t have gone through or continue to go through surgeries, procedures, many doctor appointments and using a plethora of medications.  He told me that she would be in school and be able to go to church.  He told me that at the age of 12 I wouldn’t be bathing her, brushing her teeth, wiping her hiney when she went potty (heck, I wouldn’t be sitting in the bathroom with her for hours each day).  He told me she would be falling asleep without me standing there, would want to leave the house, take family vacations, get pedicures, go shopping and do things for herself.  I had an image of a “typically developed” whole and healthy 12-year-old and my heart broke in a bazillion pieces and I cried out to God.

BUT……then I came back to my reality and I looked at Hannah now asleep.  Her innocence, her dependence on me, her sweetness, her beauty, her ability to accept her life, her resilience and my heart broke all over again.  You see, after I allowed Satan to whisper in my ear God in His still small voice whispered “look at what you have, look at what I created, look at the gift you have been given, look at HER.  Yes, she isn’t whole and healthy nor is she “normal” by the world’s standards but she is courageous, she is strong, she is loving, she is precious and she is fearfully and wonderfully created by ME and I allowed you the honor and privilege of being her mom.”  Again, my heart broke……

Satan and God collided in my mind and heart last night and GOD WON!

I will be honest……I am weary and broken.  There are days I don’t know how to pray and I seem to repeat the same prayers over and over and over again; hoping that this time God will answer them the way I want them answered.  I know it doesn’t work that way but I keep praying……I keep pleading…..I keep begging for my little girl to be well.  Perhaps I won’t see that this side of Heaven but I keep pleading on her behalf, as does she.  She prays before each meal and before bed “help fevers go away, make Hannah better, Hannah back to school, Hannah back to church.”  She knows…..she still prays……she still has faith that He will heal her; so who am I to think anything differently.  Her strength and faith gives me strength and faith.  The faith of a child…….oh, how it puts me to shame.

Please continue praying for Hannah.  If you don’t mind, say a prayer for me and Dennis too.  I can’t speak for Dennis, but my heart, soul, mind and body are weary and worn.  I am so mentally and emotionally exhausted; but I know that God will give me the peace and perseverance I need to press on……thank you for standing in the gap for us…….

God wins…….always……. even in the battle for your thoughts.  Satan knows when you are weak and he manipulates that and he will do everything in his power to make you feel worse…..oh, but my friends, God is more powerful, all knowing and ALWAYS there; in our weakest He is made strong.  Cry out to Him and He alone will whisper in your ear in His still small voice that rids your thoughts of the evil one’s manipulations.

You are stronger than you know……..press on, don’t give up……TRUST HIM!

My world in one picture

Until next time……….

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Worth Celebrating

I love celebrations, parties, get-togethers and just having happy and joyful reasons to celebrate and today is one of those days.  You see…..many, many years ago a little boy was born and that little boy grew up to be a fabulous man.  That man is my best friend, my husband, my baby’s daddy!  Today we celebrate Dennis!  He is one of my favorite people to celebrate because let’s be honest, he is a pretty great guy but he is more than that to me.  He is my confidant, my most loyal friend, my provider (financially) and let’s face it that is pretty important, especially the way I love to shop (HA).  He is the one I can take my frustrations out on and he still loves me.  He is the one who I can cry on his shoulder and when that shoulder is soaking wet, he will give me his other one.  He is my protector and defender and the one I trust most with my life and well-being.  I know he would lay his life down for me and for Hannah and that is a really big deal if you ask me.  He is a fabulous father and loves our Hannah more than life.  He has had to do so much more than most dad’s have to.  Even though Hannah is 12 years old, there is still a lot of things she can’t do for herself and Dennis is always willing to help her and me.  He doesn’t ever back down or try to pawn responsibilities off on me, because he knows he is capable and I am so thankful he is willing to do his fair share.  He gives me nights out even when he has worked all day and will come home, tag out with me and do all the nightly duties with Hannah.  Frankly, he does everything for bedtime with her if he is home.  From medications, potty time, brushing teeth, reading a book, prayers and bedtime.  She wants him to do those things and he willingly does it.  I have also seen him play Barbie’s more than once!  HA!

He works hard, always has, even prior to us having Hannah.  He wanted a big family (yes, he wanted more than one child, but I knew I could only handle one).  He would have handled more so much better than me.  But, he sacrificed that big family because I just couldn’t do it again.  He is my strength when I am weak.  I had a  little emotional breakdown the other day on the phone with him and he was calm, cool and collected and was able to “talk me down.”  He is financially smart and I am so thankful for that.  I am so thankful that he decided at the start of our marriage that we would live on his income and save mine.  That wisdom has enabled me to stay home with our sweet Hannah since she was born.  He sacrifices so much and really gets so little in return.  There are days he gets home from work and eats cereal (like twice this week) because I either have not had time to cook or had a bad day with Hannah.  There have been nights he has come home and scrambled him an egg because there was nothing prepared and yet, he never complains.  On the flip side there have been days when I have made spaghetti (his least favorite thing) and he has eaten it without complaining (even though I know he wants to spit it out).  He never makes me feel like I am not enough and always acknowledges my hard work and effort in taking care of our home and Hannah.

I could go on and on and on but let’s suffice it to say that I would be lost without him and he deserves to be celebrated today and every day.

Happy Birthday Dennis!  We love you so much…..forever and always!

Dennis wearing his favorite t-shirt!

 

Proving to the world he doesn’t “hate” cats!  Handing Cecil to my dad!

 

Here is more proof he doesn’t hate them….Simon (my parents cat).  Simon LOVES Dennis!  HA!

 

One of my favorite pictures! Pure love!

 

My love!

 

An oldie but goodie!

 

 

 

Until next time……..

 

LONG Overdue Update

Hey there blogging world…..I haven’t disappeared, although it might seem as if I have.  I haven’t had the chance to blog like I used to as time gets away from me and I haven’t been good at setting aside time to just sit down and do what I love to do; which is write.

I set the time aside this morning to give you a quick update on Hannah.  I have had so many people ask about her and I do keep Facebook pretty up-to-date but so many of those who have asked don’t have Facebook so this update is for each of you.  Plus, this update is way more detailed than I take time to do on Facebook.

It has been a whirlwind the past few months.  Let me start by saying that Vasayo has been a life-changer for Hannah since May.  As you might recall we started using the Sleep product that Vasayo offers and it has completely taken Hannah’s insomnia away.  She is falling asleep fast and sleeping all night long; which is a miracle for us as the past 4 years she has dealt with horrific insomnia and I am so very thankful for Vasayo Sleep!  So, for those wondering if the Sleep product is still working….YES, it is working beautifully for her.  I will NEVER run out of Sleep by Vasayo at my house!  HA!

We have, however been dealing with some new type health issues and we are still trying to figure out if the issues are Endocrine, Neurological and/or Cardiovascular in nature. The testing we have done so far has been inconclusive, so there are more procedures and testing heading into the next few weeks (it always seems to happen during the holidays for Hannah).  Anyway, our Cardiologist is working on possibly placing a loop monitor in Hannah’s chest to look for rhythm issues.  He sent us home with a 30-day heart monitor but after the 2nd day Hannah learned how to disconnect it and would not leave it on.  So, that obviously didn’t work for her.  The only other option is to place a monitor in her chest which would be done surgically.  I hate that for her but we need to know if she is having any arrhythmia’s.   If she is, it will be very important that we fix it.  Our Endocrinologist has ordered what they call a ACTH stimulation test.  This is a test for her adrenals.  Your adrenals are very important in your body dealing appropriately with stress and Hannah’s life is full of stress/sickness, etc.  She had “adrenal fatigue” a few years ago due to all the steroids she was on so he thought it important to test her adrenals again since she is having these new significant health concerns.  I love that his thought process is “better safe than sorry” and willing to do what needs to be done to check things out.

We had some testing done yesterday in Gainesville and then met with her Neurologist.  After seeing her test results and physically seeing Hannah he decided it would be in her best interest to have further Neurological testing done (PRAISE THE LORD).  Y’all, this is a huge answer to prayer.  So, most likely the 2nd or 3rd week of November Hannah will be admitted into UF Shands Gainesville to have tests done on her brain.  Another praise is we have been trying to get into see a Rheumatologist at UF Shands and after speaking with our Neurologist yesterday he agreed to talk to the Rheumatologist there (she isn’t taking more patients at this time), but he agreed with Hannah’s daily fevers, her already several autoimmune diseases and low immune system that it would be a very good idea to get in to see Dr. Elder.  So, I am praying specifically that he can make that happen for us.

Our sweet former nurse from Carithers, Katharine (who now works for Shands) came to visit us in the hotel and brought Hannah a new Belle Doll. Hannah was so happy and this mama was too!

 

Sitting waiting to have an EEG…..that is a forced smile….she was so full of anxiety.

 

During the EEG, once she realized there was no ouchies or boo-boos involved.

So, as you can see, we have been really busy and I would be lying if I told you I wasn’t feeling the stress and pressure right now of dealing with a medically complex and fragile child.  I laid in bed last night (like I do every night) and I cried out to God.  Twelve years of being a caregiver is weighing heavy on me.  I LOVE my little girl with ALL I have and I will do this for the rest of my life BUT…..I feel it.  I have learned not to worry and fret as much because I do know that nothing will happen that God doesn’t already know about and that He is always with us and going before us and in all reality there is absolutely NOTHING I can do to change anything; but the stress I feel on a daily basis is real.  I have never dealt with anxiety in my life like I do now.  I am so uptight and riddled with anxiety when it comes to protecting Hannah (especially from germs).  Her getting sick is detrimental and the stress I put on myself to keep her well and doing everything in my power to keep her well takes its toll on me.  I know that might sound stupid, but no one understands unless you are the primary caregiver of someone who is sick.  When Hannah is sick, it is me that is taking care of her.  When she is sick, she flares horrible (thanks to PANDAS), which is horrific and a “typical” duration of sickness for Hannah is about 3-4 times longer than most.  The worst thing I do is take her to doctor visit after doctor visit; because let’s face it….where do sick people go?  To the doctor of course!  Traveling with Hannah is no fun either.  She is not a fan of getting in the car and her anxiety spikes and until you are in the car heading home….that is when she relaxes and does better.  Going to Gainesville the other day she was riddled with anxiety.  The hotel stay, the testing, the visit with our Neurologist…..she really struggled.  Thankfully my mom took off work and went with me as it really is a 2-person job handling Hannah out-of-town.  My mom commented as we were heading home…..”she is so happy now.”  Yep….she knew the doctor visit, hotel stay, hospital testing was over.  She was a different child as we drove home knowing that the bad stuff was behind her.  It is truly heartbreaking that she gets so stressed out and has such high anxiety as a child.  Her anxiety causes some behavioral issues but very significant tics and extreme OCD to the point she is very difficult to handle alone; then the tears…..oh the tears!  So, again very thankful my mom was able to travel with me since Dennis couldn’t.

I guess that is the latest update on Hannah.  Your prayers, as always are so very much appreciated.  So  many of you have walked this journey and prayed for us on this journey since before Hannah was born.  Thank you for sticking with us and carrying us through with your prayers.  I have somewhat accepted the fact that this roller coaster ride of health issues could be our life but it won’t keep me from trying and researching and begging doctors to help us help Hannah.  God bless each of you.

The sweetest picture…..photo credit to our amazing babysitter Lyndsay!

Until next time……..

 

Ramblings Of An Angry White Woman

I am disgusted…..disgusted by people’s hearts and the hatred, evilness, corruption, dishonor, disloyalty and the disrespect of so many Americans.

First and foremost I am a Christian.  I love Jesus and in the Bible He tells me that He created ALL of us (red, yellow, black and white) and He loves us.  He created us for a purpose.  He formed us in our mother’s womb and we are precious in His sight.  Your skin color doesn’t make him love you any more or any less.  He doesn’t see or care how much money you have in the bank, what kind of home you live in or what kind of car you drive.  He doesn’t give a rats behind what religion you are (all He cares about is that you know that He was born of a virgin, was sinless but was willing to die for your sins and rose again to build a place for you in Heaven; if you just accept His gift of eternal life).

Second, I am a wife, mother, daughter, sister, aunt, friend……I love my husband and daughter and my extended family with all I have.  I even have differences of opinion with MANY of them (political, spiritual and other things) but we can agree to disagree and still love each other.  I am teaching my daughter to love people.  To respect those in authority over us (the way I was taught to do).  I was taught and I am teaching my daughter that you respect and honor your leaders…..the President, teachers, police officers, etc. You might not agree with everything they do or say but you RESPECT THE POSITION OF WHICH THEY HOLD!  I am teaching my daughter not to look at gender, race, social or economic status but instead to look at PEOPLE!  I honestly DO NOT care if you are black, white, asian or hispanic…..I will treat you with kindness, love and respect and I expect the same from you.  I don’t care if you are gay or straight.  I will treat you with the love of Jesus and kindness always.  I don’t care if you are rich, poor, young or old……your age and status in life doesn’t mean a thing to me……I just see a person that God loves and I am commanded to love you too.  That is what the Bible tells me to do.  Even if you don’t believe in the God I serve, I will still love you….I might pray extra hard for you to see the one true God but I will still love you with the love of Jesus.

Third, I am an AMERICAN.  I love my country.  I bleed red, white and blue and I will ALWAYS stand in respect when I hear our National Anthem and I will salute the flag out of my love for my country and the men and women who have paid the ultimate sacrifice for me and the freedoms I enjoy daily.  I have the right to vote and I do!  I have the right to carry a gun and I do!  I have the right of free speech (hence what I am doing right now).  I have the right to freedom of religion.  I have the right to come and go wherever I want, whenever I want as long as I obey the law.  I have many rights all given to me (and I want you to hear this part)…..THESE RIGHTS ARE ALL GIVEN TO ME BECAUSE OF THE MEN AND WOMEN WHO HAVE FOUGHT AND DIED TO MAKE IT POSSIBLE.  OUR FREEDOMS THAT WE TAKE FOR GRANTED CAME AT A PRICE.  A PRICE OF DEATH TO SO MANY PEOPLE!  Mothers, fathers, siblings, children, aunts, uncles and grandparents lost loved ones because they willingly died and continue to die for your freedom.  Let that sink in!  I hear our National anthem and the songs of each military branch and I weep because I am so grateful and indebted to the men and women who are still willing to fight for me today!  Are YOU willing to do that?  One of my regrets in life is that I didn’t join the Air Force after high school.  I should have.  I should have gone and been willing to sacrifice it all for my fellow Americans.  But, I was not brave enough or courageous enough then…..I would be now and if it weren’t for Hannah I might just do it.  Are you willing to make the sacrifice?  If not, then show the honor and respect to those who are willing and are doing it!

Today, and this week so far I have literally had a broken and angry heart over what I have seen and read.  Yes, did those NFL players have the right to protest?  Absolutely, it is in fact their freedom of speech that they are enacting but have they thought first about what they are protesting and second are they not at all concerned about the way in which they are doing it?  I mean, there are peaceful ways to protest without disrespecting our military, our flag and our country!  I will never understand their reasoning behind their “performance” and the statement they have made to me a woman who loves her country and respects her President and the office he holds.  Our country enables EVERYONE the same freedoms.  I do not see oppression!  I am sorry if that offends you but I do not see it!  We all have the same opportunities in life.  Now, there is no way I could be an NFL player.  One, because the last I checked they discriminated against you if you are a woman (hmmmmmmm) and second, I can’t play the dang game.  I can’t run, throw or catch a football.  It takes talent and skill that I don’t possess.  I am not smart enough to be a brain surgeon or an attorney.  I am not athletic enough to be an aerobics instructor or a PE coach.  God gave me, just like he gave each and everyone He created our own unique gifts and talents.  It is up to you to know what those are and use them.  Don’t blame others who seem to have more than you.  Don’t blame others who seem more “privileged.”  Go out and do what God called you to do.  We aren’t all going to be rich or famous.  Some people might have to work 2-3 jobs to make ends meet.  Some of our dreams and hopes might be squashed due to circumstances out of our control but take what has been handed to you and work hard and make lemonade out of your lemons.  Life is not always fair, but it is the life we have been given.  Make the most of it, stop blaming everyone for your problems or lack of opportunities.  Take responsibility for your own life and actions.  Love people.  Respect people (especially those in authority).  Love Jesus!  Take a  minute to step back and re-evaluate your life, your choices and what you are going to do next.  Stop blaming everyone else for your troubles and be humble and kind always.

In the words of Forrest Gump……

Until next time……….

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……..

 

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………