Broken Together

After having a conversation last night with a sweet friend, it got me thinking about the “fairytale” that most girls believe about marriage.  You know…the prince that sweeps the princess off of her feet, he fights for her, protects her, he defeats the bad guy, they get married, they have lots of money and they live…..happily ever after!  You know….that story.  The false impression every Disney movie, Hallmark movie and chic flick (romantic comedy) portrays.  Not that I don’t love those kind-of movies, I do, but, for most of us, maybe not all, that is truly a fairytale and fairytales DON’T come true.

Now, I know people who would probably disagree with me and maybe you are one of those that has had that fairytale romance/marriage.  If so, wow, you are one of the few!  I also know people who realized early on that they made the biggest mistake of their life marrying who they thought was their prince charming or princess (for you men out there).  I never want to say that failed marriage is only the man’s fault because we all know it takes two to make a marriage and two to break it, for the most part anyway.  I could write a whole blog on abuse, abandonment and adultery here, but I won’t.  Minus those issues, it takes two.  Now, I speak from experience, because I have had a failed marriage. It isn’t something I speak of often but I also don’t live or hide underneath a rock and pretend it didn’t happen.  Would I have done things differently hindsight 20/20?  Absolutely….I wouldn’t have married him!  But, I did and that is on me….my mistake and I found out VERY quickly just how big of a mistake it was!

I met Dennis shortly after my divorce and saying I came with baggage is an understatement!  I came with a PILE of baggage and we had to work through a lot for me to even trust him because of my lack of trust and belief that there was a good man out there and he was it.  We had big hopes and dreams for our future together and truly our marriage started off really great!  We were in love….in awe and HAPPY!  Very happy with each other and our life together.  We were certain we would have our Happily Ever After.  That was until our world was ROCKED and we were shaken to our core with the news we received at 17 weeks of pregnancy.

Our precious little girl who was conceived in love was not “perfect” in the eyes of this world.  She had an extra chromosome that was going to keep her from being “perfect.”  She would have trouble mentally and physically and at that moment our dreams died, our hopes were shattered and our perfect world came crashing down.  Am I being dramatic here….NO!  I remember not even knowing how to pray the next 20 weeks of our pregnancy.  I didn’t want this.  I was angry.  I was sad.  I was in complete and utter disbelief.  How could God allow this to happen to me?  What did I do to deserve this punishment?  True and harsh, but it is how I felt.  My world was turned upside down and I was broken.  Dennis was broken.  We could have been broken apart because of this news but instead we CHOSE to be broken together.

Broken together…..that is how the last 9 1/2 years has been for us.  We have not had chances to completely heal from our individual brokenness before another roller coaster loop hits and sends us spiraling back down out of control.  So, in a lot of ways we have never recovered.  We have had MANY joys along the way.  Many times of happiness and laughter; but always in some aspect waiting for the other shoe to drop….which in our case, always does.  Now, I don’t mean it is always gloom and doom….this past year, yes….perhaps, but not always.  But, in some ways we have never been whole again.  Sometimes our brokenness is slight….just a little sadness that we hide extremely well.  Sometimes it is just an ache in our heart that we can’t shake but it is always there.  Most of the time we have never spoken of it to others and even each other.  We desperately try not to dwell on the sadness and heartache but focus on the good, positive and joyful moments!

This past year that has been more difficult and we have acknowledged our brokenness more to each other and to others.  I think the word “broken” is a good word to describe the feeling.  It seems to incorporate the sadness, fear, anxiety, hopelessness and grief that we feel…..A LOT.  I was thinking last night as I was lying in bed because my eyes wouldn’t shut to save my life, about that brokenness.  I was thinking about how it could have destroyed us years ago and didn’t.  How this past year was and still is the most trying time we have been through and yet here we are still broken, but together.

I am thankful…..I am thankful that Dennis and I can be happy together and broken together.  I am thankful for a husband that supports us financially.  I am thankful for a man who isn’t afraid to cry.  A man who isn’t too proud to admit that he is broken at times and a man who FIGHTS with everything he has for his wife and child.  I am thankful that even though we are broken…..we are broken together and not apart.

Life is not easy; especially this road we are walking but I am so blessed to have a husband that is willing to continue on this path with me no matter what.  We are walking it broken, yet together and even if we don’t get our Happily Ever After here on earth…..we will in Heaven.

Hmmmmm, maybe we will get our fairytale ending after all!

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Until next time…….

Rough Day, So Much and Finding Joy

It’s been a ROUGH day.  I am not going to lie.  I cried not once, not twice but three different times all before 11am.  My heart is broken, not for me only, but for Hannah mostly.  In between rages, there is sadness.  All she talks about during those sad moments are “Hannah go school” and “Daddy back home.”  She misses school so desperately and hates that Dennis has to work.  She wants him home 24/7.  I am thinking since he can now retire (he just finished his 20th year with JSO) then maybe he should do just that and I should go back to work.  Although, if I need to leave the house to go to Publix or Target all I hear is “Mommy back home?” and she will tell me to “come right back”.  The anger, sadness, anxiety and OCD are out of control again and we don’t know why.  It is truly devastating to live this life.  It is heartbreaking to watch your precious little girl struggle.  After each rage, she falls asleep (a cat nap) and wakes up sad.  We aren’t sure if the “falling asleep” is because they are actually seizures or if the rage takes so much out of her that she goes to sleep….we have NO answers.  Hannah is back on her old seizure medication but at this time, it isn’t helping and we feel lost and helpless.

I texted Dennis earlier to tell him that Hannah had fallen asleep on her bedroom floor.  He responded that what we are going through takes him back to the emotional roller coaster ride of her first open-heart surgery when we almost lost her about 3 different times.  I responded to him, “this is worse” and he agreed.

It made me think about all Hannah has been through.  Three open-heart surgeries, 7 ear tube surgeries, 2 heart catheterizations, G-tube surgery, Endoscopies, Colonoscopies, Eye-duct surgery, 2 MRI’s, 5 EEG’s, many ECHO’s and EKG’s, many x-rays and too many to even try to count blood draws.  This isn’t even all of  it, but you get the picture.  I look back over those times and how scary they were (the surgeries) and now think those were easy compared to this.  Hannah has been through so much and is right now experiencing things that don’t even compare.  At least with open-heart surgery the problem can be fixed.  We are facing something right now that can’t be, without a miracle from God, and that is truly difficult to accept.

 

I have seen and read a lot lately about finding joy in your circumstances.  We all go through things that are difficult; some things are literally hell on earth and finding joy and happiness is quite frankly….impossible!  I have reasoned with myself that finding joy in my circumstances isn’t happening.  There is no joy to be had BUT I can find my joy in Jesus (yes, I believe there is a difference).  My joy comes from HIM alone.  I can find that joy in Him because of my hope that I have in Him.  My hope for eternity.  My hope that this world is not my home and my hope that one day, none of this is going to matter.  My hope in no more sickness, no more pain, no more tears, no more sorrow and no death!  THAT, my friends is where I find my joy.  I don’t find it in my circumstances, forgive me if that sounds horrible, but it is the truth.  If not for my faith and hope in Christ, you would most likely see me giving up and throwing in the towel on this life.  No lie there people!  If not for HIM and His love, grace, mercy and strength that He ALONE provides me, this blog post would be entitled “Giving Up.”

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So, there you have it…..my feeling and belief in finding joy in my circumstances…..I might not see the joy and happiness right now in my circumstances but I find it in JESUS!  He is the reason I smile, He is the reason I have hope and He is the reason that I won’t give up no matter how difficult it gets.

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Until next time……

Rant, Just One Hug and Broken Heart

I have been accused at times of being too private and not letting anyone in and now being too open, forthcoming and transparent.  I have learned that you can’t please everyone.  I make choices as to what I share or don’t share and those are my choices to make.  My only advice to those that find me too open is not to read what I write.  I have said MANY times this is my therapy but I also know we have a TON of prayer warriors that want to pray specifically and this blog allows them to do that.  Trust me, I don’t share everything.  There are some things just too ugly to share but I am opening up my world so that if even just ONE person is experiencing something like we are, they will know they are not alone.  Had I had ONE person to glean from this past 9 1/2 years my world wouldn’t have felt so lonely.  I didn’t have that, especially early on and I don’t want anyone else to feel the loneliness and isolation that I did and still do.  So, that is my rant.  If you don’t like what I write or don’t like me for some reason, DON’T read it….that simple!  I apologize to anyone that reads this first paragraph and it doesn’t apply to you but it really infuriates me when I hear that I am TOO open, transparent and authentic when that is MY GOAL!  I have said that from the beginning of all of this.  Easy solution…..don’t read what I write!

Warning:  I am fixing to get transparent here………

When Hannah is in a flare, I can’t touch her…..nothing!  It is even difficult to bathe her because she doesn’t want me that close.  I can’t even hug my child because she will attack me by hitting, scratching, kicking, biting or pulling my hair.  It is not constant….but I just don’t know when she will or won’t attack.  I will walk by her and kiss the top of her head or quickly rub her back but that is about it.  I cannot hug her and the only way I will attempt to give her a kiss on the face is if I hold both of her hands so she cannot attack me.  It is truly heartbreaking.  I just want one hug….that is all…..just one!

This morning, after her first “attack” I just started crying.  Sometimes I cry, other times I walk away because I am angry and sometimes I just sit there and let her keep attacking; just depends on the mood I am in.  Today, I am more emotional and I just started crying.  After her “attack” she became lethargic and fell asleep for about 10 minutes.  When she woke up, I was still sitting there with tears streaming down my face and she looked at me and said, “mama, broken heart?”  It was in the form of a question because the look on her face was “why are you crying?”  Broke my heart even more because I truly don’t think she knows what she is doing when she is doing it.  Whether this is more seizure activity (which we suspect) or a PANDAS flare (which in my opinion is happening as well)….she really just doesn’t know how to either stop the attacks or is so out of it that she doesn’t know they are even happening.  So frustrating for Dennis and me and yet…..I cannot imagine how it makes her feel.

Specific prayer request…..our Neurologist wanted to move our appointment up from the end of March to February 17th.  So, we will be traveling to Tampa to see him.  Our prayer is number one, he will order IVIG and number two, that he will be able to give Hannah a diagnosis that insurance will accept.  I am also praying that he will go ahead and do another MRI and possibly EEG just to see if we have had changes since the last ones.  At this point, I don’t care if he puts Hannah in the hospital.  We just need the appropriate tests run, the diagnosis that will get her IVIG and quickly!  We honestly cannot continue to live like this.  I never thought, as parents, we would experience anything of this nature.  Who knew that strep or other bacterial infections could cause a disease that messes so horrifically with a child’s brain.  It is truly heartbreaking and devastating.

Thank you, each and everyone who are praying for us……your prayers are carrying us through the darkest time of our life!

I thought a "hugging" picture was appropriate!  This was during those 2 months where we "had her back."  I haven't had a hug like this since!  I so miss my hugs!

I thought a “hugging” picture was appropriate! This was during those 2 months where we “had her back.” I haven’t had a hug like this since! I so miss my hugs!

Until next time…….

 

Little Girl Gone

Her brain is on fire.  She can’t control her behavior, her emotions, her actions.  She tries, but she cannot.  She is sad.  She is full of anxiety, cannot be alone.  She won’t play.  She is angry and aggressive.  The little girl I once had…..is gone.  I pray she isn’t gone forever.  I pray that this is temporary.  I pray for a cure.  I pray for relief for her little brain and body.  I pray for happiness and joy to return.  I pray….until I cannot form words; when all there is are sobs and my heart begging for relief from this nightmare.  My little girl is gone, not physically but emotionally and mentally and I am not sure we will ever get her back whole again.

I was thinking about my sweet Grandma Stapp today.  She was my dad’s mom.  To know her was to love her.  She was quiet (nothing like my dad or me).  She was calm, sweet…..gracious.  I never heard her raise her voice.  Never saw her angry and never heard her say a bad word…..until she was gone, her brain that is.  Grandma was a school teacher for 44 years.  My grandfather passed away when my dad was 13 years old and his brother, my Uncle Lee, was 5 years old.  Grandma was a widow and never remarried.  She raised 2 incredible young men….alone and she did a marvelous job.

I was a teenager in the 80’s when Grandma was diagnosed with “hardening of the arteries.”  They didn’t use the terms dementia or Alzheimer’s back then, but that is what it was.  Grandma was gone….her brain didn’t function properly and she changed……drastically!  I remember I would go with my dad every Saturday to Ms. Cato’s house.  Ms. Cato was Grandma’s caregiver and I would sit and visit with Grandma while dad and Ms. Cato talked.  Grandma was full of anger.  Filled with paranoia and the words that would come out of her mouth would make a sailor blush.  Now, for the record, Grandma would have been mortified in her actions, words and behavior had she known what she was doing; but she didn’t.  As a teenager, I remember laughing at her using the language she did….I thought is was “cool” to hear Grandma cuss!  In reality though, looking back now, I know she would have NEVER wanted me to hear those words come out of her mouth.  She would have been devastated if she had known she had ever spoken like that.  Grandma was probably the Godliest woman I have EVER known.  She loved the Lord.  She served in her church.  She loved her family, especially Tracy and I, as we were the only grandkids she had.  She was a saint, until her brain malfunctioned.

I know Hannah doesn’t suffer from dementia or Alzheimer’s, but the way Hannah has been since March reminds me of my Grandma.  The sweet, loving, affectionate, caring little girl who I once had….is no longer.  She is angry, sad, anxious and if Hannah knew what words to say, I am sure she would let some dirty ones fly.  Fortunately, other than a couple that “accidentally” get said in front of her (by me), she doesn’t know any.  Yes, in my family, if there is a cuss word said, it is by me, not Dennis…..I know…..naughty me!  Just keeping it real here people.  I digress……..

I am sad today.  No, sad isn’t the word….grieving, horrified, lost and broken, those are probably the words that best describe how I feel.  I am grieving for the little girl I once had.  Horrified at the life we are living.  Lost because I don’t know what to do or how to fix it.  Broken because my heart is shattered and I feel as if my world has crumbled.  I can’t help….there is nothing that I can do and as a mom there is no worse feeling.  All I can do is love this little girl that at times is completely unlovable.  All I can do is preserver and pray that God touches her little body and heals her.  All I can do is wait……wait to see God’s plan unravel and in the meantime praise Him in this storm.

Praise Him……that is hard when you are going through the valley.  Be thankful in everything is nearly impossible when “everything” is a nightmare.  Finding joy when there is no joy to be found.  Have you been there?  Have you gotten to the place in your life where praising God, being thankful and being joyful is nearly impossible?  I am there now, but you know what?  I am going to praise Him.  I am going to be thankful and I am going to find joy.  I might not find joy in my circumstances but I WILL find joy in Jesus…..my HOPE, my REDEEMER and my SAVIOR!   I will cry and break but then I will allow Him to fill me with His love, peace, mercy and grace and I will carry on another day because that is ALL He has asked of me.  Is it difficult?  ABSOLUTELY…..but, without Him I would have given up and WITH HIM…..He won’t let me!

Thank you Lord…..thank you for holding me.  Thank you for allowing me to be human but then taking this pain, sorrow, hopelessness and helplessness and using it for YOUR glory!  I will carry on and WHEN God gives us our miracle……I will sing His praises because the fact is…..HE ALONE IS WORTHY TO BE PRAISED!  No matter what!

I have used this picture before but the sign behind Hannah's head seems very appropriate today!

I have used this picture before but the sign behind Hannah’s head seems very appropriate today!

Until next time………

Hell Week

To say the past week has been difficult is putting it mildly.  I have referred to it numerous times as “hell week.”  I know, shame on me for using that naughty word, but there are 2 facts here…..first, there is no other way to describe it and second, it isn’t the only naughty word I have used this week, so be thankful I am not typing those!

I am so ready to get off this never-ending, vicious, horrific nightmare of a roller coaster ride that our life is consisting of.  Just when you get a slight break and you are starting to find your hope and joy again; BOOM, it hits you like a freight train and you are taking those drops and dips, not to mention a couple or three loops thrown in there about every hour!  It is enough to drive the sanest person crazy and I will be the first to admit that at times I stand pretty close to the insane side of the line anyway.

This new seizure medication that the doctors thought would work better than the old one had the adverse reaction with Hannah.  First, it gave her horrible insomnia then all of her other symptoms started flaring….the anger, aggression, rage, sadness, anxiety….it has gotten so bad that I have had to give her Valium, which I HATE doing.  It makes her unstable when walking, her speech slurs, she just sits…..but it is the only way, at times to take the edge off.  The bad part was this was gradual, we were adding the new medication slowly while weaning off the old medication, but when the old medication was out of her system all hell broke loose.  Finally, just this morning I received the go-ahead to just stop the new medication cold-turkey and put her back on the old medication at its full dose.  So, we are PRAYING that this will work quickly.  It does go to prove, however, that some of Hannah’s issues truly are seizure related.  The problem is knowing if it is connected with PANDAS, which I believe it is due to the inflammation on her brain or if it is a different problem altogether.

Needless to say, I am exhausted and I haven’t even been able to form words in my brain much less type them since I last blogged on Sunday and even that was forced to make coherent sentences.  I haven’t even been on Facebook hardly (and that means something is really wrong with me).  HA!  Hannah is back to needing my full-attention.  The moment I take my eyes off of her or leave her for 2 seconds her anxiety gets the best of her and she will snap.  Dennis has been working nights this week, which is good in one sense as he has been here to help some during the day but bad in another because some of our worst times are at night.

Please keep praying for us.   Pray specifically that this medication change back to our old seizure medication will do the trick and we can get back to where we were prior to this change.  I need some peace, quiet and SLEEP SOON!  My poor coffee pot has had to work overtime since last week and my body is begging me for rest.  Can’t even begin to imagine how Hannah feels or what she is thinking……this is so hard!

This just seems fitting today!  HA!

This just seems fitting today! HA!

Until next time……..

How I Broke My Daughter’s Heart

I am not usually a procrastinator, but taking down the Christmas tree was just too much for me to think about until this morning.  Today was the day, so I decided to tackle it.  Much to my dismay, there was one thing worse than the effort of taking down the Christmas tree and that was Hannah’s heartbroken reaction to me taking it down. I didn’t realize how much she enjoyed it.  I knew every morning she would go turn it on and say “Merry Christmas mama,” but her love for it wasn’t truly revealed until this morning. I walked into the living room and started removing the ornaments and she followed me and sat on the sofa with tears welling up in her eyes.  Dennis walked in and began helping me and these are some of the things we heard coming out of Hannah’s mouth…..

  • “Christmas tree right back”
  • “I love Christmas”
  • “I love Christmas tree”
  • “Christmas tree up”
  • “Hannah heart-broken”
  • “Christmas tree back next week”
  • “I love Christmas time”
  • “I love presents”
  • “Right back Christmas”

When I say she said these phrases, she didn’t say them just once she kept repeating them over and over and over again.  The more she talked, the sadder she got.  She even at one point kissed the tree.  We kept reassuring her that in just 11 months we would put the tree back up but it didn’t seem to help.  She wanted to keep it up NOW!  I, even at one point, considered just leaving the dang tree up.  I was ready to have my living room back in order but for that brief second I actually considered not taking it down.  Who would have cared?  Why did it matter if we left it up all year?  It made my little girl happy and with all the disappointments she has had over the last year and a half, I truly considered it.

I almost feel guilty typing this because I didn’t leave it up.  It made her happy and once again I feel as if I have broken her little heart.  A little heart that has been broken more in 9 years than most of us will experience in a lifetime.  I know she will get over this, another heartbreak, and I know it seems stupid to anyone reading this but for Hannah it was something she loved and she just doesn’t understand.  Had this mama known just HOW much she loved it, I might have never taken it down.

Our home is back in order but my little girls heart is in a million pieces. She has asked numerous times when “Christmas will be back?”  Who knew that she loved that tree as much as she did?  Now I am glad I procrastinated taking it down.  Didn’t know a Christmas tree could bring so much joy! IMG_3438 Until next time……..

Publix, New Medication, Insomnia and Giving Up

Is the title of this blog confusing?  It just means that I have so much to say and those are the highlights!  Let’s start at the beginning……

I have an awesome pharmacy.  My Publix Pharmacy flat-out ROCKS!  I am a frequent visitor and they usually see me about twice each week because of Hannah’s medications.  They know me by name and always greet me with a smile, never failing to ask how Hannah is doing.  Gotta love that!  The other night I went to do some grocery shopping and didn’t need to go to the Pharmacy for once.  I was in produce stocking up on veggies when one of the Pharmacy Techs, Angela approached me and asked if I would come back with her that our Pharmacist wanted to speak with me.  I was perplexed and initially thought that perhaps one of Hannah’s medications had gone up in price and we didn’t pay enough last time I was there.  Anyway, our sweet pharmacist told me that they had won an award for superior customer service (this was no shock to me as I could tell you story after story about how they have helped me MANY times and gone above and beyond).  They were picking 2 of their customers to participate in a video testimony and she told me that I was the first one to come to mind.  It is almost sad, in a way, that they know me so well that I would be the first one she thought of!  HA!  Anyway, I graciously said yes and that I would be honored to do it.  So, on January 28th I will make television history….okay, not really but it sounded good.  I guess my dreams of being an actor will finally come to fruition and it is reality TV at that!  Just kidding….I am not sure exactly what the video will be used for but I thought it was pretty neat to be asked.  I promised her that I would fix my hair, wear makeup and put on something other than raggedy old sweats; since they only see me looking like Honey Boo-Boo’s mama!

Well, onto Hannah now….this past week has been a nightmare.  We have been weaning her off her seizure medication over the last month and adding a new seizure medication, which the doctors all agreed should work better; not only for her seizures but for stabilizing her mood.  The problem is the dosage was wrong on the new medication; it wasn’t strong enough so when the old medication ended the new one was not enough to meet Hannah’s needs.  We think she had some “breakthrough seizures” mixed with a PANDAS flare due to some bacteria or germ that she had come in contact with resulting in…..well, to put it midly…..HELL on earth!  The NEW problem with this new medication and higher dosage is it causes….wait for it……INSOMNIA!  Oh.my.gosh!  We traded a seizure medication that was working (besides the number one side effect being constipation) to one that causes insomnia!  SHOOT ME NOW!  To top it all off, now we are having to add Melatonin to Hannah’s already long list of medications just to HELP her sleep.  The Melatonin is not a miracle drug, so even though it helps, she is still up many times throughout the night.  Not only is she tired during the day but so am I.  One tired little girl plus one tired mama equals…..MISERY for all 3 of us!  Prayers appreciated for the doctors to know what is best.  Do we wean her off the new medication and wean her back on the old medication?  Do we leave it all alone and PRAY that her body adapts and she starts sleeping?  Do we change the dosage?  Many questions and no clear answers.  Our Neurologist will be back in the office on Tuesday, so hopefully we will survive until then!  My coffee pot is working overtime right now.

Maybe this is why Hannah is so good at math!

Maybe this is why Hannah is so good at math!

Trying to laugh at our current situation!

Trying to laugh at our current situation!

Finally…..I QUIT!!!!  Quit what you may ask?  I quit SUV shopping!  I am going to keep my wonderful, well-kept, clean, 9 1/2-year-old SUV!  I have test driven and worked the numbers on the Toyota Highlander, Ford Explorer, GMC Acadia, Honda Pilot along with a few others!  I have gone back and forth  more times than I care to count and between the money these new vehicles cost and what I WANT; they just don’t match up!  We didn’t have to even start looking. The fact is, we only were looking because my SUV is 9 1/2 years old and we thought since we don’t have a car payment, now would be the time since Dennis will be officially gone from the Sheriff’s Office in less than 5 years and we will have to get him something new at that time.  So, that was our thought process.  But, I have been looking now for over a month wasting precious time I cannot get back and I am just DONE!  Some of the car dealerships and salesmen have been WONDERFUL!  Some, have not….don’t shop at Keith Pierson….they don’t like women!  Yes, I did just say that!  In fact, here is my public service announcement if you are in the market for a new vehicle….shop at Duval Ford or Duval Honda….they treat you like royalty and they listen and will do whatever they can to make you happy!  In all honesty, Dennis told me….get what you want (within reason of course….no Tahoe, Lexus or BMW, HA) but I just couldn’t go through with it.  We have 2 vehicles and no car payments and I like it that way!  I know it can’t stay that way forever, but for now I just don’t have a peace about spending the money.  Yes, I have prayed about it too…..I always pray about big purchases as I am not an impulse buyer.  The only peace God has given me is to wait, so even though I am not always good at listening to Him (trust me, some of my past decisions reflect that) I am listening now.  So…..I QUIT!  I might resume the search in a year, maybe two…..who knows, I might just keep that Buick Ranier until the transmission falls out of it and I am okay with that!  There is too much stress in my life to worry about a new vehicle.  In all actuality, I only get in one of the vehicles to go to Publix, Target and doctor appointments so what is the point anyway…..they get me from point A to point B with no car payments…..that makes me Happy, Happy, Happy!

Well, I have bored you long enough.  I still have another post I have already written but haven’t published but I will publish it soon!  Don’t want to give you Boring Blog Overload!

Until next time…….

 

Change Of Plans

I had another blog post written and ready to post but as goes my life…..there has been a change of plans.  I just wanted to call on my prayer warriors today instead and this is the best way I know to do it.

Hannah has taken another turn for the worse.  After 2 months of having her back about 75-80% she has regressed again.  The anxiety, sadness, anger and aggression has returned and on top of it her OCD is out the wazoo and now she doesn’t want to eat.  So far she is drinking but other than oatmeal, bread, yogurt and cookie balls she is refusing to eat; which is extremely unlike her.  My child LIVES to eat and she loves ALL foods, especially veggies!

My heart is once again shattered.  I think this time makes it worse because we had 2 good, positive, happy, joyful months.  It was almost like a cruel joke; “here let’s get their hopes up and destroy them all over again.”  That is truly how this feels.

We don’t know why this has happened.  We don’t know if this is triggered by some bacteria or germ.  We don’t know if it is seizure induced (we have been in the process of weaning her off her seizure medication and introducing a new one).  We don’t know if there is some underlying issue going on that we haven’t discovered.  All I do know is the happy, sweet and loving little girl who was here just last week is gone again.  Her fevers are higher than usual and her eyes are wide, fearful and dilated.  That is all I know.

So, here I am today asking once again for prayer.  Prayer for a complete healing.  I will be honest with you…..I don’t want temporary fixes.  I don’t want band aids.  I WANT A CURE….A COMPLETE MIRACULOUS HEALING!  For someone who doesn’t believe in God, that might seem impossible, but for this mama who does believe in the ONE that gave everything for me; it IS POSSIBLE.  It is VERY possible and at this moment I am calling on YOU….my family, friends and prayer warriors to call on HIM and ask for a complete healing for Hannah.  I am pleading and begging of you to join me……I want my sweet, loving, happy little girl back and it isn’t too much for God to do, if He so chooses.

The Bible says in John 14:12-14:

12 “Most assuredly, I say to you, he who believes in Me, the works that I do he will do also; and greater works than these he will do, because I go to My Father. 13 And whatever you ask in My name, that I will do, that the Father may be glorified in the Son. 14 If you ask anything in My name, I will do it.

The Bible says in Matthew 7:7-8

7 “Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you. 8 For everyone who asks receives, and he who seeks finds, and to him who knocks it will be opened.

With that said, I know in my heart He can do anything.  But, I also know, at times, He chooses not to because He has a bigger and far better plan that I know nothing about.  I TRUST HIM.  Without Him, I am nothing.  So, I ask that you pray in God’s will.  Sometimes His ways are not our ways….In Isaiah 55:8-9 it says:

8 “For My thoughts are not your thoughts,
Nor are your ways My ways,” says the Lord.
9 “For as the heavens are higher than the earth,
So are My ways higher than your ways,
And My thoughts than your thoughts.

Please pray with me…..pray with us……Dennis is heartbroken and so am I.  This past year and a half has been the hardest of our lives and we want answers, treatment and a cure.  We don’t know why Hannah is having to endure so much.  We just want her to LIVE life….we want to LIVE life and right now, once again, we are merely existing.

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Until next time……..

Our Reality

Some days I get by without thinking about my reality here at home with Hannah and other days, like today, I am reminded all too well of this harsh reality Dennis, Hannah and I live.  It is days like today that it hits me out of the blue like a Mack truck and knocks me to my knees!  Our reality….our day-to-day living is so very different from what I imagined when we decided to have a family.  Our reality is also very different than most other people and there are days that makes me very sad.

Today, for some reason, Hannah is flaring.  I don’t know why.  I have no answers.  I don’t know if she has come in contact with some germ or bacteria and it has caused the inflammation on her brain to become worse.  Her tummy issues are worse than ever; she is angry, sad and anxious.  Her fevers are higher than normal and she just doesn’t feel well.  She attacked me this morning, out of the blue and it ripped my heart in two.  I cried, those uncontrollable tears that come no matter how hard you try to stop them.  I got angry at God and begged Him for grace and mercy for my little girl.  The last 2 days I have seen her in pain because of her tummy problems.  She has screamed and cried.  I can’t help…..I can’t fix it……I am helpless and as a mom, that is the worse feeling in the world.  I have pleaded with the Lord to heal Hannah….a complete healing, a miraculous one!  A healing where she is out of pain, where she has an immune system and she is no longer sad, angry or anxious; but instead happy, joyful and at peace!  My pleas seem to fall on deaf ears and I know in my heart that isn’t the case but for so long now I have begged God for our reality to change; not for mine and Dennis’ sakes (although selfishly I do want that), but for Hannah’s sake.  For the sake of a little girl that doesn’t deserve all this suffering.  For the sake of an innocent child that cannot begin to cognitively understand why.  For the sake of my daughter…..this little person I love more than life.  I just want her to LIVE, not merely exist.

I long for the harshness of our reality to change.  I long for us and her doctors to completely understand all that is happening in Hannah’s little body.  I long for a cure or at least a more permanent fix.  Yes, she is still on the new antibiotic and all the many other medications as well, but even with all of those medications she is still in turmoil. Yes, we have had an almost 2 month break from the harshness of our reality but it hit me today that without a moments notice that could all change and it broke my heart.  Actually, I think there is probably more broken than just my heart right now, but that is probably another blog for a different day.

Things to remember in this, my reality:

  • Only live minute to minute; baby steps; one day at a time.
  • When these days occur, nothing else matters.  Focus on what is important.  That means car shopping, house cleaning, laundry, cooking, etc. can ALL wait.
  • Hug LOTS when Hannah allows it because there are days she won’t let you near her.
  • Laugh whenever possible.
  • Keep perspective; remembering what is truly important.
  • Pray and seek God’s face continually.
  • Remember that this life is just temporary and is not eternal but the things we do here count for eternity so live life, no matter how difficult it is, as Christ would have me to.  Apologize when I get angry at God…..I know that He has a plan; hold tight to the promises that He gave us in His Word!
  • Go to bed earlier!  Yes, this has become a bad habit of mine and I need my rest to function well.
  • Stay positive, even during the most difficult times; especially when I feel defeated!
  • Give thanks to the Lord in EVERYTHING!  This one is really hard!
  • Remember again…..this world is not my home…….there is where my HOPE lies!

 

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I love this promise!

 

Until next time……….

Hannah Ramblings, SUV shopping and Throwback Thursday

I wanted to document a few more of Hannah’s latest “ramblings” that have made us either laugh, cry, smile or cringe the past few weeks:

  • “No daddy work PLEASE”
  • “Daddy come back home”
    • She says these phrases constantly…..daily….many times!
  • “I love Mrs.Eleana”
    • My friend Eleana who has babysat a few times lately.
  • “I love MissLyndsay”
    • Eleana’s daughter whom Hannah ADORES (Lyndsay is a teenager and graciously gives of her time to play with Hannah.)
  • “Good Morning breakfast”
  • “Good Afternoon lunch”
  • “Good Evening dinner”
  • “Good Night NO bedtime mama”
    • These are “new” phrases and she says them appropriately at the correct time each day.
  • “Clean dry panties all day” (probably a little too much information)
    • She repeats this a lot too as we are really working on this part of her regression due to PANDAS
  • “I love internet YouTube”
    • Yes, my child discovered the internet and  YouTube on her iPad and she loves to watch videos.  I had to go and change the settings because she kept watching surgical videos and saying “cut-cut blood, IV’s, blood work, boo-boo, no boo-boo band-aid, doctor mask, nurse mask, hospital, pray for hurt people.”
  • “Great day, ice cream mama”
    • If she has a “great day” she can have one scoop of ice cream and just like her Boompa, she LIVES for ice cream!
  • “Kaley come Hannah house, play”
    • My friend Karen’s daughter has babysat some lately too and Hannah adores her as well.  Kaley just graduated with her nursing degree and I LOVE when she is available to babysit.  Who better to leave Hannah with and put my mind at ease than a nurse?
  • “Merry Christmas Mama, Merry Christmas Dennis, Merry Christmas Jesus”
  • “I love Christmas tree”
    • Yes, I still have my Christmas tree up….don’t judge!
  •  “New shower curtain, new towels, new hamper, so pretty”
    • I re-did Hannah’s bathroom and she says this EVERY time we go to the bathroom during the day!  HA!  Glad she likes it!
  • “Phone off, phone down mama”
    • Yes, she tells me this a lot.  In the mornings while she is sitting on the potty taking her precious time I will check emails, FB, twitter, whatever else but after about 20 minutes she will tell me to put it down. Why?  I have no clue, but I do as I am told and we sit and stare at each other another 40-50 minutes!  Oh joy!
  • “Pee-pee quickly”
    • I know TMI again but she will say this 200 times while sitting on the potty and still not go!  ARGH!  Not quite sure she knows what the word “quickly” truly stands for!
  • We will ask her the following series of questions and she will respond with the same answer “Dennis” (yes, she is a daddy’s girl, although she won’t call him daddy to save her life)!
    • Hannah, who do you want to bathe you tonight?
    • Hannah who is going to dry your hair?
    • Hannah who is going to put you to bed?
    • Hannah who is going to say your prayers?
  • “Hannah go back school”
    • This one makes me sad and the next one makes me cry.
  • “Hannah friends/play, Mason, Cole, Will, Kate,Koren, Caleb, Oliver and Gram too”
    • She always says her friends names from school when she talks about school and how she wants to play with them at the “playground park.”
    • She always talks about her teachers too and names them all!

She is also still “in love” with Katy Perry, Carrie Underwood and Toby Keith.  She talks about Henny MANY times each day and looks forward to the texts she gets each morning and night from Henny!  Henny’s sweet puppy raisers send her a picture twice daily with love, hugs and kisses from Henny!  So sweet!

If you are reading this, sorry for boring you but I do like to document some things and the blog is the perfect place to do that!

I have been so busy the past few weeks shopping for a new SUV and I have come to the conclusion that MOST (not all) car salesmen are like politicians….they all lie and amazingly they all have the BEST vehicle!  HA!  I am still looking, but at this time I am about ready to keep  my 9 1/2 year-old SUV because in all honesty….I like it better than anything else I have looked at!  For the record if my husband mentions a mini van one more time to me….I might hit him!  HA!  No offense to those that drive mini vans, but they are not for me.  Taking a break from my search until next week…..I have been treated extremely well by some dealerships and insulted by others….if you live in Jacksonville I can tell you where to do business and where not to!  HA!

We also have had more interesting developments with Hannah and her health but I will save that for a later update when I have more information and a treatment plan.  We have had some interesting and depressing news the past few weeks but at this time I am not sure what is going to happen.  I will share when I know more.  Until then, please keep the prayers coming!

Okay, bored you enough!  Have a great rest of the week!

Since today is Thursday here is a Throwback Thursday picture for you!

Since today is Thursday here is a Throwback Thursday picture for you!

Until next time………