Holiday Blues And Getting Past This Season

The holidays, from Thanksgiving on until the first of the year have ALWAYS been my favorite time of year.  I love the weather (this Florida girl hates the heat) and we finally get a break from the heat and humidity this time of the year.  I love the festivities.  I love shopping.  I love having our Christmas card made.  I love the tree, the lights, the ornaments, the presents.  I love the food, drinks and parties.  I love the fire roaring in the fireplace.  I love….IT ALL! That was until this year…..I admit it…..I have the holiday blues!

Yesterday was Thanksgiving and to be honest, it felt just like another day for us.  We were thankful….the 3 of us, and we expressed that it could be worse; but in all honesty we know it could be better too.  We tried to make it a good day.  I cooked a little lunch for us (ham, sweet potato casserole, creamed corn and green bean bundles) and we took a walk; but that was the extent of it.  Dennis watched a little football, Hannah played with her iPad and I “piddled” around the house.  It wasn’t a bad day…..it just wasn’t what I wished for.  I want to celebrate holidays with family and friends.  I want a house full of people.  I want laughter.  I want happiness and joy.  I want….what we used to have.  So, yes…..I finally understand what the holiday blues are and they aren’t fun.

I have already had to come to terms with a few things that won’t happen this year.  There won’t be parties that we can attend.  The shopping won’t happen, as there is no point spending money on toys that Hannah won’t play with.  This will be the first year out of 13 that we won’t have a Christmas card and in all honesty this is the thing that is breaking my heart the most!  We have always done a picture Christmas card and I send out over 200 of them, but there is no way to do it this year.  Trying to get a good picture of Hannah is rare and getting her to smile for the camera is too difficult. In fact, I will ask her if I can take her picture and she will say “no smile mama.”  So, no family Christmas picture and no card.  For those of you who get one, I apologize as it just won’t happen this year.  Maybe when we find a cure for Hannah I will send out a “Miracle Card” to shout it from the rooftops that we have Hannah back!

I am just not feeling the “spirit” of the holidays.  I honestly would cancel Christmas this year if I could!  I am trying to be positive.  I am trying to smile.  I am trying so desperately to not feel this way.  I keep telling myself the things I have to be thankful for and the many reasons I have to be joyful; but the daily struggle that we have with Hannah tends to completely overshadow what I try to tell myself.  I keep saying, “this is just a season of life, Tamara.”  Yes, there I go again admitting that I talk to myself.  I do it all the time.  I do have the best conversations with myself….heck, we always agree and that is nice!  I digress….I do tell myself that this is just a season and one day I will look back on this time and understand why we went through it…..but, at this point it doesn’t seem to be getting any better and when we do have good moments, the minute I get my hopes up that something we are doing is working, those hopes are shot down instantly…..I wonder, is this our new normal forever?  I pray not.  But, only God knows.  I trust that He has a plan and His plan is perfect but oh how I long for our old normal back…..

So, please forgive me if I can’t put that smile on my face or get excited about the holidays this year…..it is just too much and I honestly wish I could just hibernate like a bear right now until we get past this season…….this season of the year and this season of life…..

I miss this little girl.  I miss this dog.  I want this back.  December 2013

I miss this little girl. I miss this dog. I want this back. December 2013

Until next time……..

Sidewalk Cafe Heartbreak

I love city life.  Big or small cities….I just love the downtown atmosphere.  I love walking out the door to the hustle and bustle and having everything just mere footsteps away.  Shopping, Sidewalks on both sides of the street, Restaurants of all different types and especially ones with outdoor seating….sidewalk cafe’s as I like to call them.

Now, why would sidewalk cafe’s break my heart….let me explain….. Hannah and I were in St. Petersburg from Friday until Monday for some doctor appointments.  All Children’s Hospital and the Rothman Center are both located in downtown St. Pete so we have stayed each time at the Hampton Inn on Beach Drive.  You literally walk out of the front door and are within steps of the water, shopping, the theater, and all kinds of wonderful restaurants.  Many of the restaurants have outdoor patio seating where you can enjoy the gorgeous scenery and people watching while eating!  I love that…..live music, eating, being out and about, laughing, walking and sharing special times.  What breaks my heart is that I can’t do any of that. You see, the few times Hannah and I tried to get out and walk, she didn’t want to.  She actually sat down in the middle of the intersection at one point and it was like picking up dead weight to get her out of the traffic jam she caused.  Hannah was angry….she raged…..the noise, the crowds….it was all just too much and she had meltdown after meltdown and would keep saying, “Go back hotel now mama, please.”  I remember the last time we ventured out; noticing the people sitting, eating, laughing and talking.  I saw young people (you know those in their 20’s and 30’s) on dates, walking dogs or pushing baby strollers and it pierced my heart.  I noticed some older couples walking hand in hand looking so happy and the tears began to well up in my eyes.  I noticed people my age with kids (some older than Hannah and some younger) enjoying ice cream and talking about what they were going to do next.  I saw groups of young women have girls day out enjoying lunch and enjoying friendships.  I watched, listened and so desperately wanted to be a part of that.  I wanted to sit at one of those sidewalk cafes having a good dinner laughing and enjoying life but instead I was dealing with an angry, sad and anxious little girl who wanted no part of it at all.

Yes, I had a pity party for myself……as I watched people from my 4th floor hotel window tears streamed down my face wanting more…..wanting anything than what I had at that moment.  A sick little girl (she ran 103 fevers the whole weekend), a child dealing with inflammation on her brain so severe that it changes her personality and behavior.  A little girl who one minute tells me she loves me and the next minute she is scratching, hitting and kicking me uncontrollably.  At this time there is no end in sight for all of this and yes…..I cried out to God feeling hopeless and helpless and wanting MORE!  I wanted to be at one of those sidewalk cafes drinking, eating and enjoying the world around me and yet….there I was stuck in a hotel room watching my little girl suffer. I can’t say I had some great big epiphany.  At that moment I didn’t hear God speak…now if truth be known I probably had tuned Him out, not really caring what He had to say because I was angry, sad and discontent.  I.felt.all.alone and it sucked!  I went to bed feeling defeated. I woke up to the following text from a dear friend:

You do not have the power to stop or control anything that is going on with Hannah right now.  However, God tells us to consider it all joy when we face trials and tribulations!  So since we know that God doesn’t make mistakes and that he plans and choreographs things beautifully…..just TRUST Him!  Stop wavering.  Stop thinking about tomorrow and just breathe.  Inhale His creation.  Inhale His love.  Inhale His marvelous work even though you don’t feel like it!  This is what God commands us to do anyway!  Ask Him to flood your mind with comfort.  He sent His word to heal us and to deliver us from destruction.  

Well HELLO!  TRUST…God doesn’t make mistakes and he plans and choreographs things beautifully!  Was that a wake up call or what?!?  Talk about setting me straight!  I appreciate a friend that can and will say things like this in love!  I appreciate a friend that will speak God’s truths straight to me…..that, my blog readers, is what this sad, helpless and hopeless girl needed.  Yes, I was still sad I couldn’t enjoy those sidewalk cafes but I will tell you this…..ONE DAY, Lord willing…..I will!

One of the many sidewalk cafes in St. Pete!

One of the many sidewalk cafes in St. Pete!

Until next time…….

Overwhelmed…..Just Breathe

Oh my…..my brain is overwhelmed and in a fog!  I have so much to get done before Hannah and I leave on Thursday and yet, here I find myself sitting down at the computer to blog!  Yeah, this is what I need to be doing!  HA!  I needed a break though…..just a few minutes to get my thoughts together and breathe!

So far, Hannah’s Steroid-taper is working wonderfully.  I pray as we taper down the dose beginning Thursday, that it will continue to work as well.  This steroid use just goes to prove that inflammation is our culprit.  If we can figure out the inflammation on the brain and how to RESOLVE it; we might just get our little girl back.

This will probably be my last blog update until we return from Tampa.  May I ask you to pray specifically for a few things?

1.  Traveling safety and protection for Hannah and me.  This is somewhat worrisome for me as this will be the first time that I have traveled out-of-town with Hannah without Dennis.  Dennis is always the one driving, checking into the hotel and carrying the luggage (because he refuses to tip the bellhop, which I have no problem doing).  I am the one just dealing with Hannah, which makes it easy.  Our doctor appointments are also early morning appointments which if you know me, I don’t like!  I don’t make appointments here at home until late morning or early afternoon if I have a choice.  My concern is just getting Hannah and me out the door in time.  Just for the record I will be “prepared” to defend Hannah and me in case there is a need…..and I have extra bullets!

2.  That this steroid taper continues to do its job.  Pray that Hannah stays calm, without aggression and with no sadness and anxiety.  Those are the symptoms that concern me.  I need them to stay away while we are gone.

3.  Please pray for wisdom for the new Neurologist and also our PANDAS Specialist.  Pray that they will see what they need to so they can provide us with ALL the answers and the proper treatment to get our little girl BACK 100%.  Pray for a treatment that will work and one that our insurance will pay for or a clinical trial that they can put Hannah in.

4.  Please pray for Dennis.  He cannot go with us and I know he will be worried about us.  Pray that God gives him a peace while we are away.  Maybe also, if God can send him some mana from Heaven because the poor boy has to eat and if he has his way he will live on cereal and eggs!

Thank you for joining us on this journey…..it hasn’t been a fun journey this past year but it is the thoughts and prayers from our friends, family and prayer warriors that have carried us through these difficult days.  My prayer has been that these days are soon coming to an end and we will have peace and health in the days ahead!

Here is a picture of the little girl I want back…..would you pray with me for this?

In Nashville, August 2013 a month prior to ALL of this happening.....singing her heart out!

In Nashville, August 2013 a month prior to ALL of this happening…..singing her heart out!

Until next time……..

Heart Attack And Happy Birthday

WOWZERS, the last 2 days have been shocking, difficult and amazing all in one!

I have blogged before about my dad and his heart problems.  He had a massive heart attack 24 years ago at the age of 50 and almost didn’t survive.  He had open-heart surgery and at that time we were told that he probably wouldn’t live and if he did he would need a heart transplant because of how damaged his heart was.  Needless to say, he not only survived but God preformed another miracle and he had no heart damage.  This past February, dad was having some issues and after a heart cath it was decided that he needed a pacemaker and defibrillator.  Things seemed to be better or at least we thought it was.  Dad never complained about pain or shortness of breath but other people started noticing it over the last few weeks.  In fact, on a recent trip (not even 2 weeks ago) to Haiti with his church, two of the doctors and the pastor “watched” dad because he looked pale and seemed frail.  Wednesday night around 8:30 I received a text from my mom stating that she was taking dad to the Emergency Room.  I called her and told her to call 911 when I heard he was having chest pains and shortness of breath.  I waited until Dennis got home from church and then headed to the ER.  While in the ER it was determined that dad had indeed had another heart attack and medications were started to sustain him until a heart cath could be done on Thursday.  The Cardiologist told my dad on Thursday that there was a real possibility that he would need another open-heart surgery.  That was not what any of us, especially my dad wanted to hear.  The goal was to see if there was a blockage and see if a stent would suffice.  After the heart cath was completed the Cardiologist came out with the news that one of dad’s 24-year old bypass veins had a 90% blockage.  The problem was his heart was so weak that to get the stent in an aortic balloon had to be inserted and then the stent.  PRAISE THE LORD, it worked!  Dad was so relieved when he woke up and realized that a stent was all he needed.  With tears in his eyes he thanked the Lord and his cardiologist!

Now, getting a little teary-eyed here myself…..nothing can prepare you with the thought of losing someone you love that much.  The reality of life is though, that one day, that loss that you don’t want to think about is inevitable.  I will admit now that when dad had this heart attack my thoughts went there….those “what-if” questions.  The thought of life without my precious dad.  Nothing like a scare to make you think about life, what is important and give you a new perspective on many things.  I have said MANY times that there are a few men in my life that I love more than anything.  A few men that have a place in my heart like no other….my dad is at the top of that list!  I look at him and I see strength, wisdom and unconditional love.  I see a man who loves the Lord first and foremost, a man who loves his wife like Christ loves the church and a man who loves his kids, their spouses and his grandkids with every ounce of his being.  I see the foundation of our family and the thought of losing him….losing that foundation made my heart absolutely ache!  No man loves his daughter like my daddy loves me.  He and I are JUST alike and the thought of losing my “twin” scared me to death.  Dad and I see eye-to-eye on  most everything and the things we don’t see eye-to-eye on we have always agreed to disagree.  I respect the fact that even if he doesn’t agree with me, he listens and acknowledges that I have the right to feel and think the way I choose and that my feelings and thoughts matter.  In fact, there have been times where I have caused him to pause and see my perspective as right and times where he has caused me to see his perspective as right.  I love that about him.  I love picking on him and the thought of not having him here to pick on is unimaginable.  I call my dad “old man.” I have for as long as I can remember and people hear that and think it is disrespectful but he knows how I mean it.  Just like he calls me “brat” or “knot-head”…..it is all in LOVE!

Dad is doing great.  Still recuperating in the hospital.  In fact, Hannah and I just talked to him on FaceTime because Hannah was so worried that her “Boompa” was in the hospital hurt!  Now, she wants to go hug him at the hospital.  Needless to say I can’t take her up there due to germs but at least she got to see he was okay.  I am so thankful to the Lord for keeping dad safe and for leaving him with us!  I want to keep him here as long as I can….a girl always needs her dad.

Dad and his best friend Bill texting each other in the hospital?!?!  Old men and their phones!  HA

Dad and his best friend Bill texting each other in the hospital?!?! Old men and their phones! HA

Now, onto another one of the men in my life that I adore……my brother!  Today is his birthday.  I won’t put his age on here but he is older than me!  He is my big brother and someone who I admire, respect and love more than words can say.  I was the little sister and got on his nerves horribly growing up.  He picked on my unmercifully and I tattled on him all.the.time.  He got in trouble constantly because of me and he has never let me live it down.  Although, I will say, he deserved MOST of the times he got in trouble!  As the years went by I stopped getting on his nerves so much and he stopped picking on me so much and we became friends.  I grew to really respect him.  He is a man of few words (I talk enough for both of us) but when he speaks, he truly has something to say worth hearing!  He is funny….has that dry sense of humor that makes you almost pee in your pants laughing!  He is very quick-witted and not much gets by him that he doesn’t have a response for.  He is full of wisdom and he is a no-nonsense guy that hates drama!  What you see, is what you get and he doesn’t care if you like him or not.  He has a confidence like I have never seen but he isn’t arrogant.  He doesn’t express his emotions AT ALL but you know where you stand with him.  He isn’t a touchy-feely person….I might have received one hug in my lifetime from him but he would do ANYTHING for his family and his love is truly unconditional.  He is an incredible husband and father and works really hard to give his kids the things he didn’t have.  I have admired him my entire life and I will for infinity!  He is my brother…..He is my best friend!  Happy Birthday Tracy, if you read this….if not Sharon can tell you the highlights!

Happy to celebrate my dad getting past this heart attack safely and for my brother, another year to make me laugh and for me to drive him crazy with my drama.  I have loved them both for 42 years…..I am blessed!

An older picture with dad and Henny.  Dad is a cat person, but I do love this picture!

An older picture with dad and Henny. Dad is a cat person, but I do love this picture!  I miss this dog!

 

Dad and his cat Simon having a meaningful conversation!

Dad and his cat Simon having a meaningful conversation!

I would have included a picture of my brother but he is JUST LIKE MY HUSBAND and hates social media and doesn’t want his face plastered on it; so for his birthday present I won’t put a picture of him!  I tried to upload a video of Hannah telling “Unc” Happy Birthday but it wouldn’t let me upload a video on WordPress unless I paid $99 to upgrade my blog and I ain’t doing that!

Until next time……..

Where To Begin……

I honestly don’t even know where to begin…..I do try to keep my readers updated but I am finding it difficult to put into words how my heart feels.  My brain is so jumbled; there is so much going on in my teeny-tiny little brain that it feels like  I am in overload and about to explode.  I will try to keep this short….(ha, that is a joke if you know me at all).

Hannah had a very difficult week last week…..lots of rage, anger, anxiety, sadness….this flare of PANDAS has truly been horrific and it has been over a month now!  Each day, a roller coaster, not knowing how she will be moment- to-moment.  No way to live…..one minute she is fine and then BOOM, BAM, WHAM….she is angry, violent, mad and well…..there is nothing worse than watching your child lose control and there is absolutely nothing you can do to calm her down.  All you can do is hold her so she doesn’t hurt you or herself and that is not an easy task.  Anyway, last Wednesday it was really bad….so bad that I didn’t think I would survive another moment.  I had placed a call to Hannah’s pediatrician and the plan was to change her antibiotic to see if that helped.  I had also placed a call on Monday to Hannah’s PANDAS Specialist in St. Pete but had not heard back yet.  I was about to have a complete emotional breakdown when the phone rang and it was Dr. “T” from St. Pete.  I explained what had happened….you know, the whole “I made a mistake and went against what you told me and gave her the flu shot and now we are in the middle of a horrific nightmare” explanation.  After talking about 30 minutes, she asked me if I minded if she called our Pediatrician….I was like, YES please do!  Long story, short…..Dr. Kim and Dr. T talked and they decided to try Hannah on a Steroid burst.  It was 5 days of Prednisone.  Kids with PANDAS will have one of two reactions to Steroids.  Either they will improve dramatically or get worse!  But, we didn’t know until we tried.

I gave Hannah the first dose of Prednisone on Thursday morning at breakfast and for 5 days we had our little girl BACK!  She was happy, dancing, singing, hugging and loving.  She played in her room for hours ALL BY HERSELF (that hasn’t happened since PANDAS struck in March).  There was no screaming, no anger, no rage, no violence, no sadness, no anxiety…..SHE WAS BACK BETTER THAN EVER!  She received her last dose on Monday morning.  By 3pm on Tuesday afternoon we noticed the decline and BOOM, BAM, WHAM she was gone again….that quick….that fast…..that heartbreaking!  I just looked at Dennis and I couldn’t help it…..I just cried!

Now, yes, as bad as this sucks several things stuck out to me.  Number one, the steroids worked which goes to prove we are in fact dealing with inflammation in her brain.  Now, ask our ex-neurologist’s and they will disagree with that but the prove is in the results of the steroids. Number two, Hannah still ran her daily fevers but they didn’t hit their normal high of 101.5-102.  They hung out around 100.6-100.8 and below.  Today, they hit the 101.5 mark again.  Things that make you go hmmmmmmm!  So….we know we are dealing with brain inflammation and most likely now, we know that the fevers are an autoimmune issue.  Yes, PANDAS is autoimmune but the fevers were here WAY before PANDAS.  So, with that we know we are dealing with 2 different autoimmune issues or diseases.  Number three, with PANDAS; when steroid bursts work, it usually means the child is a PERFECT candidate for IVIG!  These are the things that I got out of this and that is HUGE!  It gives us more pieces to this extremely difficult puzzle.  It gives the doctors more to work with and it has given me hope that maybe, God is going to use this to get Hannah the treatment that she needs and maybe it will help another child down the road.

Here is my request to you…..Hannah and I will be leaving on Thursday, November 20th to travel to Tampa.  We have an appointment with a new Neurologist down there and also Hannah’s PANDAS Specialist.  Please pray first and foremost for traveling safety for us.  Please pray that during this trip that we will get the answers that we need and perhaps a treatment plan.  I am praying earnestly for IVIG….maybe a clinical trial or something.  Our insurance will not pay for IVIG if the diagnosis is PANDAS so we need either a clinical trial or a diagnosis that insurance will be willing to pay for.  Please pray for wisdom and guidance for our doctors and continued strength and peace for us.  Of course, as always…..please pray for God’s perfect healing on our little girl!  I know beyond a shadow of a doubt that God has a plan and I am trusting that He will reveal it really soon and it will all be worth it!  He is still on the throne, He still works miracles and He is still in control!

As always, we are so thankful for you….our friends, our prayer warriors, our family and even those that read this blog that I don’t know personally….we are so grateful for your concern and care for us!  God Bless each of you!

Amazing what steroids can do....my dancing princess was back for 5 joyous days!

Amazing what steroids can do….my dancing princess was back for 5 joyous days!

 

Reading Llama, Llama.....it was a really funny book!  Love this smile and laugh!  5 days of this and my heart was happy!

Reading Llama, Llama…..it was a really funny book! Love this smile and laugh! 5 days of this and my heart was happy!

Until next time…….

 

 

 

Something To Be Thankful For

So  much has happened this week and I am emotionally, mentally and physically exhausted but I have to say I am so very thankful for the few doctors that HEAR us are LISTENING to us and are working diligently to HELP us and Hannah.

This thought brought me to this post today.  My blog has seemed so depressing lately.  Even when I re-read what I write at times, it makes me want to cry all over again!  So, today I am trying my best to mentally make it a point when something sad or bad happens to remind myself of something to be thankful for; a reason to keep going and the miracles that God continues to perform each day.  Some days that miracle from Him is just for me to get out of bed and function; but still a miracle that the stress and pressure from the last year hasn’t done me in yet!  HA!  I never would have classified myself as being “strong.”  So, for me to continue functioning, that is the grace of God at work here people…..not who I am but who HE is!  I want that to be made totally clear.  Tamara, alone, would be on drugs or at the bottom of a bottle of Vodka by now without Christ…..just keeping it real here folks!

Anyway, I wanted to list here a few thing that I am grateful for right now, TODAY.  I am trying to keep all my thoughts in the moment right now (which is difficult for me because I am such a planner) but I do want to remind myself that I have so much to be thankful for; even on days that seem hopeless…..there is still thanksgiving to be had!  Here it goes:

1.  My Lord and Savior, Jesus Christ…..without Him, as I said before…..I would have given up already!  This is not a life I would have chosen for myself, so alone, without Him I would have failed miserably already and given up with no hope, no faith and no future.

2.  Hannah’s Pediatrician Dr. Kim…..I am thankful for all of Hannah’s doctors but Dr. Kim is special.  She is one of a kind.  She started this journey with us 9 years ago and continues to share this roller coaster ride with us.  She honestly, by now, could have said that she didn’t have the time or energy to invest in Hannah’s many medical issues but instead she is on-call to me 24/7 and diligently works with me, researching every possible issue and problem.  She hasn’t given up on us yet and I would be LOST without her.  Talk about “angels among us,” she is one of them……I tell her often that she is my angel from God.  Not only does she have a strong faith in the “Great Physician” but she is humble enough to reach out to other doctors (including our PANDAS Specialist, just yesterday) to ask for advice and treatment plans/options.  I am forever indebted to Dr. Kim for all she has done for us.  I truly believe she loves Hannah nearly as much as I do!

3.  An understanding husband……this is a tough one to write because it reveals my failure as a wife, but it needs to be said.  My husband has accepted being put on the back-burner for the sake of our child.  So many people will argue that you have to tend to your marriage and make time for each other, and I agree with that wholeheartedly.  BUT, when you are in a situation like we are…..the “making time for each other” part is EXTREMELY difficult, if not impossible!  Dennis works so hard during the day and comes home tired.  I am not just a mom, but a caregiver of a sick child all day, there is a difference.  I have experienced the joys of motherhood and the difficulties of motherhood when Hannah wasn’t sick.  This past year, it has all been difficult and the added stress of Hannah being sick every.single.day has me worn completely out by nightfall.  With all of that, making time for Dennis has not been possible and in all reality with his work schedule and working extra jobs to keep us financially stable keeps him from making extra time for me.  We don’t get “quality time” at all.  At the end of the day, when Hannah goes to bed all we want to do is veg out watching mindless television shows and then go to bed early.  Dates don’t happen, period and the thought of just the two of us taking any kind of overnight trip (or longer, which is what I DREAM of), is not even in the realm of possibility at this time.  So, I am thankful for a husband that understands…..is patient with me and knows that my lack of attention to him is no reflection of my love for him but in all honesty…..Hannah just needs ALL of me right now.  I long for the day that Dennis and I can get away, rebuild what the past years have done to our marriage and at the same time balance it all.  Until then though, I am very thankful for Dennis and the man he is.  His willingness to provide financially and then come home to most likely feel unappreciated even though that is never the intention.

4.  Mine and Dennis’ family……they offer to help, even though for the most part my response is “I don’t know anything you can do except pray.”  Praying is the one thing I know that they do for Dennis, Hannah and me daily.  Thankful just knowing they are there if I need them.  Just yesterday, I needed a new prescription picked up for Hannah and Dennis couldn’t get it because of work.  So, I called my dad and he went to Publix and got it for me.  Publix gave him the wrong prescription and dad willingly went back and got the correct one.  It burnt up a lot of his afternoon but he did it selflessly and willingly and I am so grateful for those times where our family will drop everything to help.

5.  Friends, far and near……From prayers being said to Facebook messages, comments, texts, emails, mail and phone calls from friends mean so much.  The friends that have provided meals so that I can have a night or two off from cooking and I can concentrate more on Hannah has been such a blessing.  The goodies that friends have sent and brought by for Hannah has brought a rare smile to her face.  I am thankful, more than anyone knows for my friends…..all of you!

I could continue to list things I am grateful for as just writing the 5 above has helped me see that no matter how bad the day may seem there is always something to be thankful for.  I could write more but Hannah needs me and I can’t sit here any longer and if I write too much I will lose my male readers who prefer bullet points over paragraphs (you men know who you are).  Anyway, if you are still reading then you must REALLY be bored today but if you are, just know that no matter how bad it seems…..there is always something to be thankful for.

Oh, and for the record....I am thankful for homemade cheesecake that Mr. May made for me......hint, hint!

Oh, and for the record….I am thankful for homemade cheesecake that Mr. May made for me……hint, hint!

Until next time……

 

When You Feel God Isn’t Listening……

This picture was taken a few years ago, but I know that little girl is still here, trapped inside and I  know one day, Lord willing, we will get her back.

This picture was taken a few years ago, but I know that little girl is still here, trapped inside and I know one day, Lord willing, we will get her back.  I just need to TRUST HIM MORE!

There are days, a lot of days actually, that I wonder if God is listening.  I know He is, but as things with Hannah continue to decline on a daily basis, the devil does try to lie to me and convince me that God isn’t listening.  I pray, beg, plead and yet……at times, in all honesty, it seems to fall on deaf ears.  Now, yes, that is the devil trying to weasel his nasty little self into my core.  The devil wants nothing more than for me to blame God for all of this.  He wants nothing more than for Dennis and me to let this destroy our marriage and he wants nothing more than for us to feel hopeless.  I have to admit, keeping up with my need to be transparent here that I DO feel helpless and there are days that I feel hopeless too.  The devil hasn’t won a battle yet with me, although at times I do get really down and feel as if I can’t do this anymore.  He hasn’t won a battle and he sure as hell won’t win the war!  Sorry if that word offends anyone, but I am a firm believer that in keeping it real, you see it all….even the words that are going through my head!

I do sometimes cry out to God, “are you listening, do you hear me, do you care?”  I know that He is listening, I know that He hears me and I know that He cares more than anyone else does but sometimes you scream it out to Him to make yourself feel better.  I was thinking about this today as I was scrubbing the bathrooms (I do my best thinking while cleaning).  I was “going there” and allowing myself to think if God was really listening to me, if He really heard my cries and if He cared when all of a sudden a thought went through my head.  It truly was like He was speaking directly to me.  The voice in my head (yes, I admit I have them), said…..Maybe when you feel God isn’t listening that is the time that you need to trust Him MORE!  Now, where that thought came from I cannot say, it wasn’t from my own wisdom or keen intellect, I assure you.  But, at that moment, it was like HE was speaking to me and for the first time in a while, I felt PEACE.  When I don’t feel like God’s listening, maybe that is the time that I need to trust Him more.

I do believe God has a plan and a purpose for each of us…..Jeremiah 29:11 assures us of that:

11 For I know the thoughts that I think toward you, says the Lord, thoughts of peace and not of evil, to give you a future and a hope.

He has something He wants to show us or someone else through our difficult days and our good days.  Our lives are a story to be used for His glory.  I don’t know why He has chosen us to tell this story.  I don’t know what I am supposed to learn or someone else is supposed to learn from the story of our life; but it is the one He has chosen for us.  During the most difficult times though, when I truly feel that He isn’t listening are exactly the times when I need to trust Him more.  I need to say, “okay God, here I am.  I feel alone, lost and scared but I trust you.  I trusted you in the days past and I trust you even more today.  I don’t know your plan, I can’t see your hand but I trust your heart.  I trust that YOU ALONE will make something beautiful out of this hardship.  I trust that YOU ALONE will use this valley for your Glory and I trust that YOU ALONE will answer our prayers in YOUR timing and for our good.  I don’t know if my prayers for Hannah’s healing will take place on this earth or if her healing will take place in Heaven but I trust that it will happen and it will be your perfect will.  I trust that YOU ALONE will give Dennis and me the strength, peace and wisdom we need to handle whatever comes our way and that your hand of mercy and grace will be on my precious little girl that you entrusted to us 9 years ago.”

1. ‘Tis so sweet to trust in Jesus,
and to take him at his word;
just to rest upon his promise,
and to know, “Thus saith the Lord.”

Refrain:
Jesus, Jesus, how I trust him!
How I’ve proved him o’er and o’er!
Jesus, Jesus, precious Jesus!
O for grace to trust him more!

2. O how sweet to trust in Jesus,
just to trust his cleansing blood;
and in simple faith to plunge me
neath the healing, cleansing flood!

3. Yes, ’tis sweet to trust in Jesus,
just from sin and self to cease;
just from Jesus simply taking
life and rest, and joy and peace.

4. I’m so glad I learned to trust thee,
precious Jesus, Savior, friend;
and I know that thou art with me,
wilt be with me to the end.

Until next time……..