“Thank You Jesus”

Once again, I am the student and Hannah is my teacher…..”thank you Jesus,” not my words; but hers.  Let me explain…….

This past weekend through yesterday was what I would call a “nightmarish blur.”  A rollercoaster of emotions, feelings and thoughts consumed the 3 of us.  Hannah, when in a flare is completely unpredictable.  Her emotions, her actions…..everything about these flares are all-consuming to our family.  There is not much peace, little joy and happiness and lots of confusion, sadness and grief.  This weekend started as the usual “hell” but God sent us some angels in the form of friends who have continually showered us with gifts and blessings throughout this 3-year journey with Hannah.  Saturday they brought us a new Blue Ray DVD player, chocolate covered popcorn and had ordered me a movie I had been wanting to see; which arrived yesterday.  I know some of you may think….”why a DVD player?”  Well, I will tell you…..I happened to mention to them that I wish I had one to watch some movies…..we had been talking, it came up in conversation, I thought nothing of it and BOOM…..Saturday they brought us one.  A shocking gift, yes!  From the Delaney’s….not shocking at all.  They are the epitome of “the hands and feet of Jesus” to us and many others.  Saturday went okay with Hannah after that and Dennis grilled us a wonderful dinner and I went on a 3 mile “WAOG” (that is a walk/jog combined, ha).  I am trying to get in a lot of cardio each day and so far I have kept up with it as I know it helps me clear my mind and stay healthy.

Sunday, was a rollercoaster with Hannah.  Her tummy was severely bothering her.  I won’t go into detail but just know due to severe constipation she suffers horribly and problems occur often.  Anyway, Dennis had to work at church Sunday night and Hannah and I, after dinner, made our nightly trek to the bathroom.  We hang out there every night after dinner for a long time, especially when certain medications have been given to warrant long visits.  We were sitting there and I texted Dennis a message and went to put my phone down on the hamper and it was at that moment I saw it happening and couldn’t get to her.  Hannah had a syncope episode (passed out).  It happened so fast but yet it was like I was watching it in slow motion (and my brain continues to replay it over and over again still today).  I tried getting to her before she hit the tile, but couldn’t.  She was out for about 30 seconds and when she came to she was so scared.  I was scared she had hurt herself  (head or neck) and I was panicking.  Of course these things always happen when Dennis is working.  I just kept saying “it is okay baby, it is going to be okay.”  She just cried and I held her.  I got her sitting back up and thought briefly about calling 911 but instead I just called her Pediatrician, thank the Lord she answers her phone for me.  Our original plan was to go to the ER, as our concern was Hannah’s neck.  She has what they call “atlantoaxial instability” (AAI) with subluxation.  It is a instability in the neck between the C-1 and C-2 vertebrae.  Our concern was when she hit the tile that her neck could have twisted or bent the wrong way causing further instability which could cause significant Neurological issues, (which we don’t need).  So, we decided to go to the ER.  I texted Dennis (yes in church) and told him what was happening.  Hannah was lethargic and crying and her anxiety shifted into full gear, combined with my fear of ER germs I texted our Pediatrician back and due to Hannah’s anxiety and germ exposure we decided to wait until Monday morning and get Hannah checked out at the hospital.  By the time we made that decision Hannah had calmed down and only had a red bruised mark on her right shoulder where I believe she took the hardest hit.  We gave her some Motrin and her medications and put her to bed.  Once she was asleep, I completely lost it emotionally.  All I could see in my mind was her falling and me not catching her.  Wasn’t that I didn’t try, I did; but it happened so fast and I had no clue she was going to pass out.  She has only passed out one other time on the toilet and she was very sick when she did.  I think I cried every tear I had in me.  I was emotionally exhausted and finally went to bed but guess what?  I didn’t sleep.  I think I woke up every hour and went to check on Hannah……then every time I closed my eyes I saw her pass out and fall…..it wasn’t the first time, as she has had too many seizures to count and yes, some syncope episodes as well; but this is the first one I didn’t get to her in time.  My arms weren’t there to catch her when she fell and that literally ripped my heart in two.

Monday morning we headed to Wolfson’s and it was a long day!  But, the good news is her neck has no change and even though she has the AAI, she is stable and I am so thankful for that.  When we got home, Hannah’s tummy was severely bothering her and I knew what we had to do…….so there we were again at 4pm yesterday in the bathroom……now, trying to spare her privacy and not put too  much information on here, but all of a sudden the Lord heard our prayers and answered them!  Hannah looked at me with the biggest smile on her face and she yelled, ,”THANK YOU JESUS, tummy much better now.”  I sat there and tears welled up in my eyes.  Here is this little girl who happens to have Down Syndrome.  She lives a life that is completely unfair with no friends.  She is sick all the time, has a horrible disease that affects her brain, is immune deficient, has had 3 open-heart surgeries, has scoliosis and adrenal insufficiency; among other things and yet….she is thanking Jesus!  She kept saying it over and over and over again.  Dennis got home and she told him…..”Hannah’s tummy much better daddy….thank you Jesus.”  The smile on Dennis’ face was priceless.  At least she knows who to thank for the good things in life.  No matter how difficult life is, no matter how many bumps, hills and valleys…..we still thank Him; we are still grateful and we (Dennis and I) are still learning so much from our little girl.  We might be her parents, but she is our teacher.

Thank you all who have been praying for us, thinking of us and walking this journey with us.  It isn’t easy and it always seems to be something.  We long for a break and some peace but no matter what happens we are going to join Hannah and say, “thank you Jesus.”

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Until next time…………

Heart Ripped Out

I can pretty much handle anything thrown at me……I consider myself pretty tough-skinned, for the most part.  I wasn’t always, but life has a way of hardening you.  I have learned to not care what others think of me, be who I am and not ashamed of it.  I am not someone who searches for ways to please people and I am certainly not someone who is overly impressed by others.  I keep to myself for the most part; mainly because I have no other choice and I tackle each day as they come….with one foot in front of the other.  Sometimes little baby steps and other times bigger more confident ones.  It is hard to insult, embarrass or offend me, again, hasn’t always been that way…..just LIFE…..circumstances and seasons of life bring change….change in friends, change in thoughts, change in attitude, change in behavior and the way you deal with things.  So, all this to say there isn’t much (unless you mess with my family) that will get a rise out of me.

But, there is one person in this world who has the power to rip pieces of my heart out, stomp on those pieces and break me.  Hannah…….she has the power with her eyes, her voice and her rage/aggression to literally bring me to my knees in tears.  Many days I find myself asking God why.  Why has He allowed my little girl’s brain to be so full of inflammation that she literally goes Psycho-bat-crazy and of course, if not harming herself, she harms me?  Each time it happens, my heart feels like it has had a piece ripped out of my chest and destroyed.  Not being overly dramatic either……it truly is a real aching in my heart each time. There are times I sit there and just cry.  Other times I am just numb and sometimes I get really angry.

We have a lot going on right now…..a lot of things are uncertain and decisions need to be made; things need to change and we are in “wait and see” mode.  Last night, Dennis was on night-shift and I texted him after one of the 3 vicious attacks by Hannah and said, “you need to just retire now…..you need to be home and I will go back to work.”  If you think I am joking, you are mistaken……hell, I will go load trucks at UPS at this point in my life to carry our insurance and he can stay home with Hannah.  On top of Hannah raging, Henny has been sick for over a week with a skin infection but the antibiotic she is on has messed up her tummy and trying to deal with Hannah and Henny has about sent me over the edge to the loony-bin.  Dennis’ work schedule has changed and in all honesty, I HATE it!  I cannot even keep up with it right now…..I haven’t learned the new schedule so I don’t know if he is working day-shift, night-shift, weekend-shift and ugh, I just hate it!

In the back of my mind I know the day might come where we will need to hire help.   I don’t know what that will look like but I know that day isn’t too far away.  Hannah, when in a flare, regresses horribly and let me just stop right here and say that puberty hasn’t even hit yet and yes, I am thinking about that and I am seriously freaking out about that day.  How?  How do we do that?  Okay, I regress……but, there is so much physically that we still have to do with Hannah that we are going to need help with the older she gets.  We have tried 4 times to get home-healthcare through our insurance and been denied each time……Hannah doesn’t meet the criteria; although she should.  My brain feels like it is going to explode with all the thoughts going through it.  How do we get help?  How do we afford help if insurance isn’t going to kick in?  How do we do this forever, if this is forever?  What do we do when Hannah gets bigger and stronger and she still rages?  Let me tell you, my kid is strong….when those rage attacks happen she is like mountain lion strong!  This might be too much information, but let me give you an example of her strength.  So, no secret here that Hannah has “potty issues, in the #2 department,” right?  So, a few weeks ago we had to give her a suppository.  I laid a towel on the floor and Dennis held her laying down while I tried to give her the suppository.  Let me just say we were all out of breath and in tears after the struggle.  She fought like something I had never seen before and Dennis trying so hard not to hurt her, literally struggled trying to keep her still and safe in the process.  She is strong and she is a fighter.  Those aren’t bad qualities to have unless someone is trying to help (like us) and she just doesn’t understand.  We have that language/speech/understanding barrier we are trying to deal with too.  There is no reasoning with Hannah, no talking her down and no getting her to understand why she feels the way she does….anger, sadness, anxiety….all those things, even though she feels them; she cannot comprehend them.  SO.VERY.HARD!

As you can tell by this blog post, I am struggling……what’s new, right?  I wish there was a light at the end of the tunnel that we could see, but there isn’t.  I pray every night for a healing miracle for Hannah but it hasn’t come yet; I am not doubting because I know He can heal her, but for some reason unbeknownst to me, The Lord has decided not to at this time.  My heart just aches……never knew you could love someone so much that it hurt.  The fact that she is hurting and I cannot do anything to make it better is devastating and rips my heart out piece by piece……

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Until next time……..

Confession and Change

They say confession is good for the soul so here is my confession…..life is hard!  I never dreamed that this would be my life.  Let’s face it, who thinks about all the things that could possibly go wrong when you are planning to start a family?  I remember when I found out I was pregnant and instantly I thought of the future….the hopes and dreams I had for that little person growing inside of me.  Then, our world got shaken and flipped upside down with the realization that the little person we were anxiously awaiting would be “different,” have a bad heart and might not live.  Those previous hopes and dreams came crashing down and I remember just grieving horribly.  When Hannah was born, we began to imagine new hopes and dreams for her.  They were quite different from the original set; but still we had them for her future.  Nearly 3 years ago, those hopes and dreams came crashing down around us and here we are.  I haven’t been able to think about new hopes and dreams for her because let’s face it, each day is so different and the thought that THIS life we are now living, being forever is a difficult pill to swallow.

Who knew at nearly 11 years of age I would still be doing everything for her?  Bathing her, sitting on the potty with her (for hours) and reminding her it is time to go potty.  Yes, Hannah is “potty-trained” to an extent but she doesn’t go on her own….she has to be reminded.  I still get up with her many times each night like a newborn and I cut her food up and mash some of it so she doesn’t choke while eating.  I watch my friends with their kids (okay I am watching on Facebook because it’s not like I see any of you interacting with your kids) and…..well, confession time again; it makes me sad.  Not for my friends, I am not a jealous type person…..I wouldn’t wish what we are going through on my worst enemy but it makes me sad for me…..for Hannah and for Dennis.  Here is a perfect example…..Hannah loves her iPad and about 3-4 months ago she came running into the kitchen with her iPad.  She was on the internet and the trailer for Finding Dory came on.  Finding Nemo is her favorite movie….she likes Bruce the Shark!  Anyway, she kept saying, “mommy, find Dory, find Dory….Hannah go find Dory!”  Oh the heartache I feel just because I cannot take her to see Finding Dory.  I told her that as soon as it comes out on DVD I will buy it, but I would give anything to take her to see Finding Dory in the theater.  Of course, that isn’t possible as I cannot afford to buy the whole theater out just for us!  HA!  It is just those little things that make this that much more difficult.  She loves Disney World and has asked a million times when we can “go back to Mickey’s house?”  I keep saying, “one day honey, one day.”  Traveling with Hannah since PANDAS hit is really hard……the anxiety is enough to push us all over the edge! Her slew of medications and of course her immune deficiency makes it all nearly impossible.

I will admit, it has been especially hard lately.  Hard to get anything done, not because of lack of time, but instead….lack of motivation, drive and care.  Apathy, I think is a good word to use.  I won’t say depression completely, but apathy as I just haven’t cared.  This flare she is in now has been a bad one.  It didn’t start out too terrible but then it spiraled downhill out of control.

This break from Facebook made me really think.  I mean, let’s face it….you want change and you want more but no one can give that to you.  You have to decide for yourself that the change you are looking for can only be done by you!  My hands are tied, in a lot of ways but in some ways they aren’t; but I was allowing my self-pity to control me from doing anything about it.  Can you relate?  Maybe you can, maybe you can’t.  I find myself just sitting…..sedentary and that is the worst thing to do when you are in difficult times.  So, what changed?  My attitude, my outlook….knowing that I am the only one who can control my actions, my achievements and my dreams.  Yes, my dreams are far-fetched and most likely I cannot make those happen, due to Hannah and her health issues, but I can do better at taking care of me in the meantime.  So, here are the changes I am making:

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I have found a babysitter!  Hallelujah!  She is homeschooled and has sat for Hannah several times now.  She is only 17 years old, but has the maturity of a 25-year-old!  Hannah loves her and she loves Hannah.  She is a dear friends daughter and she is available during the DAYTIME hours and she only lives 5 minutes away!  I cannot afford her but about once a week but you know what?  That is once a week that I get a break and I will take it.  Lyndsay has been a God-send and she is worth every penny I pay her!

I have joined a Bible Study group that starts meeting next Wednesday night for the next 6 weeks and I am so excited about that.  I might miss one or two depending on Dennis’ schedule but it is better than nothing at all.

I have started exercising again…..I always worked out and ran prior to Hannah being born and then I joined a gym when she was about 5 years old and got in really good shape and then she got sick.  I miss the gym!  I am one of those people who does better having to go somewhere to work out.  I don’t do as well with it at home, but you know what…..this is where I am.  I have no other choice and there is something about exercise that helps you mentally, emotionally and physically!  So, whether walking, lifting weights or kick-boxing I can do those things at home and have started making it a priority.

Diet, this is not that big of a deal usually because I feed my family very healthy.  We have the occasional “treat” but for the most part we eat well.  Lot of veggies, lean meats and complex carbs.  This is all fixing to change more though as we are embarking on a diet to “heal Hannah’s gut.”  Being on antibiotics around the clock for over 2 years, plus all the other medications Hannah is on, not including the inflammation issues in her body has wreaked havoc on her little system.  So, I have been talking to a Functional Neurologist who is going to help us heal her gut.  In doing that it will help us heal her brain the best we can.  We need to remove all sugar and inflammatory foods out of her diet and believe it or not there is a lot of sugar and inflammatory properties even in “healthy foods.”  So, as much as I am dreading this diet, it is a must for us…..Dennis is even less thrilled than I am although I told him he could keep his vanilla wafers and Nutella for snacks after Hannah goes to bed!

Dennis and I have talked a lot about getting away more often.  I don’t know how that will work because let’s face it, I really need a “Village” to help me care for Hannah when Dennis and I go away.  I don’t want to ever take advantage of the few people I have; but I am praying that we can add some more people to that “Village” so that no one feels taken advantage of.  It is hard though, to find people who you trust 100% when it comes to your child’s care.  I have a handful of people who I trust to take care of her as if she were their own…….and I need to trust people like that.  Knowing that Hannah’s needs and best interest are put before theirs always!

So, that is where we are right now.  My confession on how difficult life is and what I am doing to make it better, at least trying to.  I know so much of my “apathy” has to do with being stuck in these four walls.  Please hear me when I say I will do this for the remainder of my life if need be.  Is it my desire?  No, but my desire is to do everything as unto the Lord.  This is the journey I have been given.  I didn’t “choose” it but my Heavenly Father chose it for me.  For me to not put forth my all to do it well is on me and I don’t want to fail Him in the challenges He has allowed me to have.  I could list a hundred other things I would have rather done with my life but that would not be beneficial in any way to me or to anyone else going through struggles.  What I can do is my very best to not just “survive” but to try to live too.  That is the difficult balance……I want to do more than just be in survival mode……I want and need to learn to live through it as well.  I am slowly learning that taking care of myself is vital to finding that balance.  So……hang in there with me and I will keep you posted on how it goes!

Here’s to learning to live in the valley while climbing to the mountaintop!

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Until next time……………..

 

 

Fathers……..

I’ve met many “Father’s” in my life, but several of them have and continue to have a lasting impact on me and I want to share these men with you……first off my Heavenly Father who loves me more than anyone does, even though I am so undeserving.  He walks with me and carries me through all of life’s difficulties.  Without Him I would not be able to handle anything in my life right now.  He is the ONLY reason I have the energy, grace and perseverance to carry on each and every day…….

This is a long post……so I understand if you don’t finish reading but this is my tribute to some of the men in my life who I admire.  I will start with the one whom I call dad.

My dad……for those that know us, you know the “apple didn’t fall too far from the tree.”  I am my daddy’s daughter.  Our personalities, demeanor, looks…..I got it all from him.  He was my provider and protector for many years (even some years he didn’t want to be anymore, but we won’t get into that).  We have not always seen eye-to-eye on things, but we have gotten very good at “agreeing to disagree” with each other.  That is our motto a lot…..we can “agree to disagree” and love each other in-spite of him being wrong….ha!  See how I did that?!?!  We never meet strangers.  We love people.  We love to talk and most people hear us from a mile away, because we are both loud!  He doesn’t care what people think about him, just like I don’t care what people think about me; but don’t mess with our family!  He doesn’t allow circumstances to define him and he is always the one to say, “it could always be worse.”  I could learn a thing or two from him regarding that.  He is always looking for someone to help and he would literally give you the shirt off of his back.  He has the ability to sell ice to an Eskimo and make it sound like the perfect idea; that wasn’t his!  HA!  He can negotiate anything, especially when buying something, as I have NEVER seen him pay full price for anything….so happy I inherited that quality.  You should have seen he and I negotiating the sell of this house I now own!  HA!  He loves The Lord with all his heart and truly tries to be a light in this dark world for Him.  He loves my mom and I have to say they have had a beautiful marriage these nearly 51 years.  He loves his family, friends and his church.  He still works full-time and loves his work family and his bosses.  They are truly family to him and he will probably never retire.  He is still the one I want to call when something bad happens because he has a unique way of turning the bad into something good and we end up laughing even when I want to cry.  With each of Hannah’s 3 open-heart surgeries, I was strong, barely shed a tear, until I saw my dad and I lost it.  Nothing like melting into your daddy’s arms when life is hard.  His arms have always been there to catch me and for that I am eternally grateful.

My brother……what can I say about this dude who I adore?  He is my oldest and dearest friend.  He was my first friend,  my brother, my confidant and my hero……still is!  We are complete opposites and I drive him CRAZY, but I know deep down…..way down deep…..way, way, way down deep he loves me.  Tracy isn’t one to use those words or show ANY physical/emotional touch or love but it is there.  I remember seeing it the very first time I saw him hold his baby girl, Megan (who is now 19 years old).  I always adored my brother but that admiration grew so much more when he became a dad for the first time.  The love and care he had and still does for his children (especially from someone who has difficulty showing it) was quite impressive to me.  He is a pretty cool dude and I am the lucky one to have him for my big brother and his kids are blessed to call him dad.

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I have this picture framed in my home…..it is one of my favorites because these are 2 of my most favorite people on the planet!

My grandpa…….oh, no one has ever nor ever could hold a candle to this man.  He was my #1!  Losing him was the biggest loss I have ever felt and I still feel it to this day.  Nobody loved his family, his wife, kids, grandkids and great-grandkids more than Chet Kriner.  He had a heart the size of Texas full of love; so full he would talk about any one of us and he would get tears in his eyes.  He was especially proud of his great grandkids……they all stole his heart and I wish he had lived to meet the ones that were born since his passing.  He was the best in every way……he was always happy and joyful, never angry and always full of love and ready to help you if he could.  He always spoke in kindness, without judgment and with grace and mercy……..he loved everyone.  If the world had more Chet Kriner’s in it, it would be a better place to live.

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My Grandpa Stapp……even though I never knew him, I love him.  From what I hear he was exactly like my dad is now…..what’s not to love?  I wish I had grown up knowing him but the Lord called him home at the age of 49.  My dad was 13 years old at the time and my Uncle Lee was only 5.  My sweet grandma never remarried and raised those boys all on her own.  I could write a book about her!  A precious lady……she has always had a piece of my heart and I know my Grandpa would have too.

My Grandma Stapp (left) and my Aunt Janie (right). They were sisters and 2 of my favorite people ever. I don't have a picture of my Grandpa Stapp or my Uncle Dempsey but these 2 ladies were the loves of their lives and I think can be recognized on their behalf!

My Grandma Stapp (left) and my Aunt Janie (right). They were sisters and 2 of my favorite people ever. I don’t have a picture of my Grandpa Stapp or my Uncle Dempsey but these 2 ladies were the loves of their lives and I think can be recognized on their behalf!

Papa G…….Mr. Garrison helped raise me.  His daughter Tammy and I were inseparable growing up and I spent many days and nights living with them through junior high school, high school and college.  To this day, Tammy is my dearest friend.  All of the Garrison’s live in the Atlanta area and we try to get up there at least twice a year to visit.  Every time I am with them, it is like “going home.”  Mama and Papa G always just treated me like their own; I wasn’t blood but they treated me as if I were.  Tammy and Michelle (Tammy’s sister) are my sisters; and Matt is my brother….no lack of blood relation will ever change that.  Let’s not even talk about the way they love Dennis and Hannah.  Let’s just say, no matter what Dennis and Hannah instantly became family too!

Me, Papa G and Hannah!

Me, Papa G and Hannah!

My second dad…….Bill Cutts……hard to put into words what this man means to me and my family.  He is my dad’s best friend and husband to one of the most amazing women I know.  He is a hard-working, honest man, full of integrity and character.  He is a wonderful role model for my husband and I am glad that Dennis has someone like Bill to look up to.  He loves Jesus, loves his family and I truly don’t know anyone with more integrity than Bill.  I am so blessed to have him in my life. He has proven time and time again to be full of wisdom and insight and truly there isn’t a funnier man on the planet!

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My father-in-law……a wonderful, compassionate man who raised a son just like him.  Wayne is probably one of the kindest people you will ever meet and has a hug and kiss awaiting you if you are female!  HA!  He worked hard his whole life and just last year retired again….he retired many years ago (before I knew him) from his “real” job and then immediately went right back to work.  He loved to work and his work ethic is one thing I know Dennis inherited and I am so grateful for that.  He is a man who  loves Jesus, loves his family and has many friends.  I am blessed to say that he raised the man I call my husband and I credit Wayne for many of Dennis attributes.

My father-in-law (on left) and my dad (on right)

My father-in-law (on left) and my dad (on right)

Don Wells…….oh what can I say about this man who knows what it is like to walk in our shoes.  He and his precious wife Joetta have a daughter, who like Hannah has had several open-heart surgeries, along with many medical issues.  Don and Joetta have walked this entire journey with us and have done so much for us and continue to.  Don is a wonderful dad, husband and dear friend.  Dennis makes sure every Sunday that he finds both Don and Joetta at church to give them a hug and hear a joke from Don; because he is full of them!  Absolutely one of the funniest men I have ever met and you are sure to laugh and smile every single time you are around him.

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Steve Zona…….okay, so I have to set this one up a little for you.  He was my husband’s Sargent for a long time and became one of Dennis’ best friends.  Steve is a wonderful police officer, Sargent and now the President of our Local Fraternal Order of Police.  His work record speaks for itself but what I have had the honor and privilege of witnessing first-hand is what a great dad he is.  He is the husband of my dear friend Kathleen and the father to Joe, Emily and Jack.  He has raised his kids to love and respect people no matter their skin color, sexual orientation, financial status or age.  He has instilled a strong work ethic in his kids and all 3 of them work and go to school.  He has raised kids to be respectful to adults and authority. If I were asked to pick one person who had every quality needed to be a great dad, I would pick Steve Zona as that dad.  No finer man, husband, father or friend and I couldn’t write this blog post without acknowledging him in the list of father’s I admire.

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One of the kindest, sweetest men I know and let me say he harasses me like my own brother does……but I wouldn’t have it any other way!

Frank Rodgers……I really don’t have the words to talk accurately about Frank.  He is the husband of my dear friend Melanie and the father of his two beautiful daughters, Ashley and Sarah.  But, to us, he is more than most.  He is Hannah’s 2nd dad!  Frank and Melanie are the ones that have kept Hannah for us the 2 times that Dennis and  I have had the chance to get away together and also many times for just babysitting.  Frank hasn’t had to help Melanie but he wants to.  He loves my little girl as if she were his own and she loves him!  Frank has a unique quality about him to overlook Hannah’s disability and see her abilities and he has the power that not many people do to make Hannah laugh…..those deep, gut, hysterical laughs that we don’t hear very often.  If you ask Hannah who she loves, she will say “Frank and Melanie” most of the time.

Hannah and "her Frank"

Hannah and “her Frank”

I could go on and on about the Father’s who hold a special place in my heart but I have to save room for one more…….

Last but certainly not least…….my husband……the father of my daughter……the man that I wouldn’t want to trade for anything or anyone in this world.  The man who could have thrown in the towel many times but instead hangs on this rollercoaster ride with me at times with a death grip.  Our rock, our protector, our provider and the one who loves our little girl with a love so big, so strong and so steady.  He and Hannah have the sweetest relationship.  I love the way they look at each other.  The way she lights up (even when she is in a bad way) when he walks in the room.  The smile that she gets if you just mention his name.  She wakes up every morning and tells me, “no daddy back to work, here with Hannah all day long.”  He is always gone when she wakes up, but it doesn’t keep her from saying that.  He will text and she knows his text tone and will say, “Daddy come here right now.”  He will FaceTime and all she wants to talk about is when he will “come home to new house.”  She has things she wants me to do and things she wants him to do.  She always wants me to bathe her and put her lotion on her legs and arms.  But, after that she wants him only!  “Daddy dry hair, daddy give meds, daddy rub lavender oil on back, daddy potty, daddy hand lotion, daddy say prayers, daddy bedtime.”  Fortunately, if he is home he is happy to do all those things with her and for her and let’s face it I AM HAPPY FOR HIM TO DO THEM!  He is her “play toy.”  She wants him to play with her (yes and sometime that means my manly husband sits on the floor and dresses Barbie dolls).  She wants him to read to her, do puzzles with her and sometimes just be in the room with her.  I love that she wants to be around him.  I love that he looks past all the problems (physical, mental and emotional) in our little girl and just sees his #1 girl.  The one person he would do ANYTHING for.  I know beyond a shadow of a doubt that Hannah is always safe with her daddy……he would sooner die than allow anyone or anything to hurt her.  They are each other’s biggest fans and nobody loves Hannah like Dennis…….I am so thankful that they have such a special bond…….it makes my heart smile and on the days that I just can’t take anymore I know Dennis is going to swoop in, take the load off of me and do everything for Hannah so I can get that break.  Nothing more special than that Father/Daughter bond and one that I am so happy my 2 loves share.

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Happy Father’s Day to all the dad’s out there, especially those who suffered such tragedy last week in Orlando.  The father of Christina Grimmie, the father of little Lane Graves who was attacked and killed by the alligator in Orlando and to all the fathers who lost their son or daughter in the Pulse Nightclub Massacre.  I cannot imagine the pain they feel each day and especially on days like today.  Not to forget all the mom’s who play dual roles.  I know many of you like that who don’t have a real dad for your kids and you do it all…..Mother and Father…..today I am thinking especially about you and praying for you.

Until next time………

 

The Storm Rages

Yesterday I wrote about the horrific act of terrorist violence and also the death of a young singer in Orlando over the weekend.  Those 2 horrible acts of violence still have my heart broken and raw.

Today, it is about the storm raging in my own home.  What we are dealing with and have dealt with for almost 3 years now is NOTHING compared to the loss of those lives over the weekend; but it is my own personal hell.  A hell I wouldn’t wish on anyone and the reason I beg God every.single.night to come get us and take us home.  I long for Heaven.  I long for peace.  I long for no more sickness, pain or sorrow.

Hannah still isn’t sleeping…..so that makes for bad days when you don’t sleep at night.  The drugs we use to get her to sleep work, but they don’t keep her asleep.  So, about the time I fall asleep, she is getting up and down for the next 3-4 hours.  I am exhausted, she is exhausted and that mix is lethal!  I am so thankful for her Pediatrician trying to help and try different things to get her in a place of peace and comfort when she is in a “flare.”  If any doctor has tried to help and has walked this entire journey with us, it is Dr. Kim.  Last night, she suggested we start Prednisone again just to get Hannah in a safe place, since it truly does help the rage/attack episodes.  I am not a fan of steroids but if they help Hannah, then we need to use them.

Hannah attacked me and then herself this morning and then melted into a puddle of tears…….it was about an hour after the Prednisone, but in all honesty we don’t think that was the reason; as she has never responded like that to Prednisone.  She didn’t sleep last night so most likely the lack of sleep was the contributing factor.  It is just so hard to know what triggers these attacks.  They are truly heartbreaking!  As a mom, you just want answers and you want to comfort your child when they are sad, in pain, frustrated…..but, I can’t with Hannah.  When she gets like this I have to keep a safe distance and it makes my heart ache even more.  I can’t do anything……

Would y’all pray for me this week?  Dennis is having to go out-of-town and I just need this storm to stop raging for the week.  I wanted so badly to go with Dennis but we just couldn’t make it happen this soon after going to Washington DC last month.  So, now he is leaving and this storm is raging in our child and home.  I just need her to be calm while he is gone……Dennis is the one who does ALL of Hannah’s bedtime routine…..medications, potty, teeth, bed…..she wants him to do it and I don’t blame her; she is with me all day long.  Of course she wants him when he gets home….trust me, that does not hurt my feelings in the slightest!  But, when he is gone, it is just the two of us and well, she doesn’t want it that way and that anger and frustration surfaces more than usual.  Would you just pray for the storm to quiet…..better yet, pray for the storm to pass and never come back?

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I have found myself over the last few weeks not even knowing how to pray…..I pray for peace in our home and in Hannah’s little life.  I pray for a complete healing in Hannah (because I know HE is capable of performing that), but at this time none of those prayers have been answered.  I don’t know why, but I know He has a reason and purpose for not answering my prayers the way I want them answered.  I know sometimes it is just life and some people never get a break….that is how it feels for Hannah.  She hasn’t had a break in 11 years almost; always one thing after another.  But, this I know…..Jesus loves her, He loves me, He loves Dennis and He loves YOU too!  So, no matter what you are facing in life, hold on……don’t give up……even when it becomes unbearable (trust me, I am preaching to the choir here).  The storm may be raging but I know the ONE who can calm the storm or at the very least calm His child…….

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Until next time……….

A Weekend Of Tragedy

I sat down a few minutes ago at the computer to read the news and get the latest updates from the Orlando TERRORIST ATTACK that occurred over the weekend.  Innocent AMERICANS were murdered for what?  Their lifestyle?  How incredibly heartbreaking and pointless.  What a horrific attack by Islam-Extremists…..this was not some random bat-ass-crazy person; this was a TERRORIST ON AMERICAN SOIL!  I could go all political right now on a rant against our leaders, especially that person that sits in the Oval Office but I am not going to.  There are enough political blogs, news reports and commentaries out there to read from both sides of the fence that have more information and knowledge than I do; so I will leave it to them…..I have my beliefs and they fall right in line with very conservative views; especially protecting our borders (closing them actually) and protecting our 2nd amendment rights.  Because of events in Orlando this weekend, you can be assured I will not go anywhere unarmed!  We have to be vigilant, alert and ready for anything just in case.

I feel such heartbreak for the Orlando victims, their families and their friends.  These were innocent people out on the town.  I have no words of comfort that can possibly help, except that I am praying for each and everyone affected by this horrific terrorist attack.  The other senseless, sad, awful killing that happened in Orlando this weekend was that of Christina Grimmie.  I didn’t know much about her and I had never heard her sing, so I googled her today and a video popped up of her singing “In Christ Alone.”  I watched it with tears streaming down my face…..her voice was that of an angel and the words she sang were so incredibly heartbreaking…….as I listened to her sing the last verse of this song, chills went up my spine……No guilt in life, no fear in death.  This is the power of Christ in me.  From life’s first cry to final breath.  Jesus commands my destiny.  No power of hell, no scheme of man, can ever pluck me from His hand; Till He returns or calls me home, Here in the power of Christ I’ll stand.”

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In Christ alone my hope is found,
He is my light, my strength, my song;
this Cornerstone, this solid Ground,
firm through the fiercest drought and storm.
What heights of love, what depths of peace,
when fears are stilled, when strivings cease!
My Comforter, my All in All,
here in the love of Christ I stand.

In Christ alone! who took on flesh
Fulness of God in helpless babe!
This gift of love and righteousness
Scorned by the ones he came to save:
Till on that cross as Jesus died,
The wrath of God was satisfied –
For every sin on Him was laid;
Here in the death of Christ I live.

There in the ground His body lay
Light of the world by darkness slain:
Then bursting forth in glorious Day
Up from the grave he rose again!
And as He stands in victory
Sin’s curse has lost its grip on me,
For I am His and He is mine –
Bought with the precious blood of Christ.

No guilt in life, no fear in death,
This is the power of Christ in me;
From life’s first cry to final breath.
Jesus commands my destiny.
No power of hell, no scheme of man,
Can ever pluck me from His hand;
Till He returns or calls me home,
Here in the power of Christ I’ll stand.

I think her testimony is in that song, that she sang so eloquently!  My heart is so sad for the loss of such a talented, God-fearing girl.  A young lady who had her whole life ahead of her and was watching her dreams of being a singer come true.  All taken away because some person, for whatever reason decided her life was not valuable.  Just like the terrorist who murdered in cold blood all those innocent people…….for what?  FOR WHAT?  I am so sad, angry and disgusted by the cowardly acts of 2 individuals (I cannot call them men because real men don’t murder innocent people).  Two individuals took many lives this weekend.  Somebody’s son, daughter, sister, brother, friend…..what a loss…..what a sad day and age we live in.

Prayers for Christina’s friends and family, for the friends and families of the ones slaughtered in the night club massacre, prayers for Orlando and prayers for our country……

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Until next time………

Stop, Be Still and Just Breathe

I have so much going through my head; jumbled and random thoughts.  Things I want to say but not sure that I should or even how to put them into words.  Lack of sleep for the past month might be part of the reason.  Hannah hasn’t slept through the night since this flare started and of course if she is up, so am I.  Amazing how the lack of sleep affects every single aspect of your life and your ability to function on a daily basis.  Then compound the daily lack of sleep over a month…..well, I am not functioning much at all.

Dealing with Hannah during the day has been an emotional and mentally draining endeavor.  From her mania, to depression, to anger many times throughout the day and her hyper-activity and then lethargy all added in there I can’t take my eyes off of her right now.  For example…..she was in her playroom on Friday afternoon and I ran into the kitchen to clean it up from breakfast and lunch (if you know me you know I clean my kitchen after each meal usually).  I then realized it was way too quiet so I walked in her playroom and she had found a pink sharpie marker and had drawn all over her arms, legs, chest and hands.  She had also drawn BIG lips on one of her Barbie’s and all over the Barbie’s body and given her pink streaks in her hair.  Needless to say, Sharpie marker is very difficult to clean up and because Hannah doesn’t like to be dirty (even though she did it to herself), she melted into a puddle of tears when the alcohol wouldn’t clean her or Barbie up completely.  Oh, and before you wonder where she got the pink Sharpie…..it was in a marker caddy at the TOP of her closet in the playroom, which meant she had to climb up to get it!  UGH!  For the record, it isn’t there anymore!

I go through my life in a fog a lot of the time.  I do put a lot of information out there but trust me, I don’t tell everything.  I have said before that I blog for 2 reasons…..therapy for me and to let others know they aren’t alone.  I am on Facebook a lot because in all actuality it is my only connection to the outside world. So I scroll around seeing what others are up to, read a lot of articles about PANS/PANDAS that my other warrior moms post and I use Messenger a lot so I can keep up with my friends privately who I never see.  I am on Facebook many times throughout the day as it is my “break from reality” and my connection to others.  Yesterday, I logged on mainly because I was trying to procrastinate getting my floors done (and no, I never got them done) and the first 2 things that popped up from others on my timeline were heartbreaking for me to read.  Normally I would have gotten angry, but yesterday it was like a punch in the gut.  The posts were written in anger and one was just written out of ignorance and the other was written against my family (my mom, dad and husband).  What was even worse in the one written against my family were the comments that followed from people who didn’t know the whole story and only heard how awful the situation was.  Now, let me be clear on this…..no one in my family is friends with this person except me so the FB status and comments only affected me and in all honesty, it wasn’t even about me but it was attacking my family.

For those who don’t know my family let me say this……my mom is probably the sweetest, kindest, most polite, most gentle woman you could ever meet.  She accommodates everyone if she can, never stirs up trouble, loves everyone, wants peace, never causes issues and is truly a Southern belle.  I dare one single person to say anything negative about my mom because there is just nothing negative to say.  I am not saying this because she is my mom and she and I drive each other crazy sometimes because we are so different!  But, no one can truthfully say that my mom is anything but sweet and kind.  My dad, is loud, happy, energetic, and loves to tell a good joke.  He is a man who hates confrontation, but will confront if need be and he has the unique ability to let things roll off his back like water off of a duck.  You can’t hurt my dad with your words or actions.  He isn’t perfect and he will be the first to tell you that.  Dennis……if you don’t know about him just from reading my blog, then you aren’t paying attention.  Dennis is a man of honor, character and integrity.  He keeps to himself, works hard and will never stir up trouble.  Now, if you piss him off, he will just write you off.  That is how Dennis rolls.  He has a temper and knows how to show it, not always in the appropriate manner, but usually he is right; not always….I said usually!  All that to say….one thing I can honestly say about the 3 of them is they would NEVER intentionally hurt anyone.  They all 3 work hard at their jobs (both during the day and the weekends) and they accommodate people if at all possible.  Never would any of them want trouble nor deserve trouble or hateful talk like they received yesterday.  Again, only I was affected by this though as had it not been on Facebook we would have been clueless.

I think the sad part in all of this is that I am the one who saw it and frankly I was the ONLY one hurt by it.  Like I said, dad and Dennis let it just roll off their backs and mom…..well, she is so sweet she would never even say if it affected her or not.  She probably told dad…..”well, it is okay….I will pray for them.”  Me……well, I will admit I am on the “hyper-sensitive” side right now.  Things affect me right now that usually wouldn’t (although you talk trash about my family, it affects me).  But, if you could see my heart, if you could be in my head and if you could see how my soul literally aches right now with all we have going on, you would understand why these 2 Facebook posts affected me so horribly.  I will admit……I sobbed……almost to the point where I couldn’t catch my breath.  Not that what was put on Facebook should have made me do that, it was just the build-up of so much crap in our life (things you know about and things I have never written about), that just absolutely destroyed my heart.

Dennis walked in the house and he took one look at me and said, “what is wrong?”  So, I told him, through sobbing tears and shaking.  I really think he thought, “holy crap, she is about to have a mental breakdown.”  After I got a hold of myself I was just extremely sad.  I took Henny out for a walk while Dennis put Hannah to bed and the thoughts in my head were so jumbled as they still are.  I walked and walked and walked until my legs felt like spaghetti noodles.  God bless Henny for hanging in there with me because normally my dog hates to walk.  I still can’t shake this extreme sadness.  Maybe it is depression, anxiety or just the feeling of being so very done.  I know my heart hurts, I know I feel like I have the weight of the world on my shoulders (I felt that before yesterday but I was dealing with it better).  I know I can’t runaway or quit; I wouldn’t do that, but the ache is now not just in  my heart, it is in my soul.  I have had to convince myself that logging onto Facebook right now would not be a good thing so I have lost my outside connection to the world for now.  I will log back on eventually in a few weeks, but as of right now this blog is all I have.  I don’t want to read anything else negative or ignorant.  I will miss for now those people who always make me laugh or write the most wonderful things.  I will miss for now looking at pictures my good friends and loved ones post.  My friends and family who I never see will be really missed, but I know I can text them.  But, for now, I have to take care of my mental and emotional health (I have neglected those 2 things).  I need to be still and breathe.  Maybe this was God’s way of telling me that is just what I need to do and maybe I have finally listened.  I will be blogging and my blogs automatically link to Facebook so I won’t be forgotten completely.

Life is just hard…..I know I am not alone in thinking that.  I know so many people go through so much worse than I ever could think possible.  I know I have so much to be thankful for and I know that I have a Heavenly Father who is going to continue carrying me through the difficulties…..BUT, it isn’t easy.  It isn’t easy to be isolated when you are your daddy’s daughter and love people and love to be with people.  It isn’t easy to watch your child go through hell on a daily basis and not be able to help her.  It isn’t easy to watch your husband deal with so much that I would never blog about but he does it because he has no choice.  Life is just hard and I just want peace……blogging is my outlet and right now Facebook is part of my problem.  If I see I have private messages, I will check those since they will ding on my phone.  Other than that, this is me trying to stop, be still and just breathe.

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Until next time……….