Precious Sacrifice

Exhausted……mentally, emotionally, physically and yes, even spiritually!  Don’t take this as me quitting or giving up, because I am not, but exhaustion is starting to hit me hard.

Hannah isn’t sleeping and hasn’t now for about 5 weeks…..she goes to sleep quickly and sleeps for about 5 hours and then is up and down MANY times between the hours of 1am-5am.  I truly don’t know if she sleeps at all during those hours.  She comes into our room and I walk her back to hers and tuck her in each time; but I do think sleep escapes her and frankly, it is escaping me too.  She then sleeps from about 5am until 8am, which is a blessing but those 4 hours in the middle of the night that we are both missing out on is debilitating for us both.  I truly have no energy during the day and neither does Hannah, but she won’t nap.  I have trouble shutting my brain off at night so it is 11pm-midnight before I ever get to sleep and then the vicious cycle begins….let’s  not even begin to talk about the mental and emotional exhaustion of the past 18 months.

Then, there is the Spiritual exhaustion.  Yes, you can get spiritually exhausted…..where you have prayed, pleaded and begged God so much to see doors open and then slammed in your face….yep, that will do it…..that will exhaust you.  Don’t get me wrong here I am NOT losing my faith or hope in my loving God that still provides me grace, mercy and strength each and every day to press on.  He still provides exactly what I need, but I am human and at times I wonder what He is doing, why He is allowing it and when He is going to make this work out for our good!  I am sure He is working this out for our good, we just don’t see it yet.  I am clinging to the hope that we will see it….sooner rather than later!

A friend of mind sent me this the other night and it brought me so much encouragement….I shared it on Facebook but wanted to share it here as well:

Hannah is the Lords. You are the Lords! Rest in Him and don’t carry this burden!! Hannah is made perfect in His sight and He will carry you all thru this.
This great task of mothering Hannah is your precious sacrifice to the Lord!
In 2 Samuel 24:24 “I will not sacrifice to the Lord that which costs me nothing”
Perfect and beautiful sacrifice and worship can come at a great cost.
You are paying a great, high cost daily as you mother Hannah. It is a beautiful sacrifice to the Lord xoxo

Precious sacrifice?!?!  I truly never have thought of mothering in that way.  I have never looked at what I do each and every day as a sacrifice to the Lord.  Yes, I do know I have sacrificed but not in any way that another woman in my situation would hopefully do.  I see no other choice but to do what I need to do for my child, my heart, my love.  I have never looked at what I do day-in and day-out as a precious sacrifice to my Lord.  What a beautiful description, thought and encouragement.

I have said this many times that I know exactly WHY God gave Hannah to me……it was His ONLY way to get through to me.  It has taken the past 9 1/2 years for God to truly get a hold of my heart and life and for me to commit wholeheartedly to Him.  Yes, I was raised in a Christian home, I was raised to honor and love God.  But, you can love Him and still not be 100% committed to Him!  I lived that life for 33 years!  I knew right from wrong, I would ask forgiveness and then I would go right back to my wicked ways.  Not to say that even today I don’t get “wicked” sometimes….just ask Dennis as many times my basic mode of transportation is that of a broomstick and having an evil laugh!  But, what I am saying is it took this situation, removing  me from basically the outside world for me to realize that the ONLY ONE we have is Jesus!

Hannah has taught me what unconditional love is.  She has taught me what true sacrifice is and she has taught me grace and mercy….the kind that we should extend to others!  I didn’t have those qualities prior to Hannah.  Heck…..unconditional love in my opinion didn’t exist.  True sacrifice was skipping a few meals to afford the new pair of shoes I just had to have in my 200 pairs shoe collection and extending grace and mercy to others….well, it just didn’t happen from me!  I was so legalistic in my thinking that I was better than anyone else……especially those that didn’t believe the way I did.  Oh, it makes me sick to think of the people I must have offended in my legalistic way of thinking.  It makes me sick to think that I was better than anyone else and it makes me sick that I didn’t extend grace…the kind of grace that Christ extended to ALL of us on Calvary!  Yes, I was that person…..that cared more about materialistic things and nothing about people for so many years.

But…..because of a little girl named Hannah……all because God knew that He would NEVER get my attention any other way…..I became a mom (when I swore up and down I would NEVER have children) to a child that required my unconditional love, precious sacrifice, grace and mercy!

So, you see……over this past 9 1/2 years of practically being a prisoner in my home I have learned.  I have had a great teacher….a little girl who has taught me what forgiveness is.  A little girl who doesn’t see color, status, gender, age….a little girl that I truly believes looks through her eyes like the Lord looks through His.  Not saying Hannah is like Jesus because He was sinless and she most certainly is not; but that she loves everyone (except Barack Obama, but that is a another story for a different day).  She truly doesn’t hold a grudge, or care if you are black or white, gay or straight.  She doesn’t care if you are rich or poor, old or young.  She doesn’t care what you can or cannot do for her.  She just LOVES.  Now, she doesn’t care if you sin either so I know she and the Lord disagree on that, but my point is she doesn’t let legalism or this world tarnish her ability to see PEOPLE and extend love, grace and mercy to each and everyone (again, except Barack Obama but I think she has just heard Dennis and I express our disdain a little too often).

I know this blog post is all over the place, let’s chalk it up to my exhaustion but bottom line is this…..I serve a mighty God.  A God who loves us ALL.  A God who has extended His grace and salvation to us ALL!  A God who goes before us, carries us and will never leave us nor forsake us, especially in the difficult days!

Today, as tired as I am, I am clinging to that……His grace is sufficient for me especially in my weakness and my precious sacrifice to Him is mothering this special gift that He gave me…..a little girl named Hannah and even through my exhaustion that is enough to keep me pressing forward!!

A little "Throwback Thursday" and a look back at better days!

A little “Throwback Thursday” and a look back at better days!

Until next time………

Tired Of Fighting…..Hear Me ROAR

The last 9 1/2 years has been a constant fight.  Fighting for my child.  I was told while I was pregnant that I would spend the majority of my life fighting for things for Hannah that come naturally for the “typically-developed.”  I have fought battles that most parents don’t have to.  There is one battle that has been ongoing though.  For 9 1/2 freaking years…..the battle with insurance companies has raged many times.  I have letter after letter after letter over the years that say something that our doctor requested was DENIED.  Now, I don’t take denial as the end of the story and in all honesty; Hannah’s Pediatrician and I have fought many battles together and WON!  I have yet to lose a battle with an insurance company and I don’t plan on starting; but today I realized just how very tired I am of fighting and another battle has just begun…..

I haven’t won a battle with Blue Cross/Blue Shield yet, because I haven’t had to have one.  All the battles I have fought were with Aetna and to be honest I think this battle that has just begun will be the worst one yet.  Blue Cross/Blue Shield has started a war with me and as tired as I am…..I WILL NOT GIVE UP!

Found this picture and it reminded me of how Dennis and I feel......at least I have him fighting with me!

Found this picture and it reminded me of how Dennis and I feel……at least I have him fighting with me!

Our Neurologist in Tampa has said that High-dose IVIG is the one thing that might just put Hannah in remission and take this horrible autoimmune encephalitis away.  This disease is horrific.  I have watched my once happy, loving, energetic little girl become sad, angry, aggressive and lack any motivation to do anything.  I have watched her regress horribly in her gross and motor skills, in her potty habits, in her physical activity.  I have watched the joy and excitement over everything disappear.   I have watched her go from bubbly and energetic to reclusive and constantly tired.  So, the treatment that our doctors (Neurologist, PANDAS specialist and Pediatrician) all agree on is being denied by a group of men and/or women that think they know better than my child’s doctors do.  I know insurance companies have doctors on staff that review requests for coverage, but they are NOT Hannah’s doctors….they work for the insurance company and the insurance company doesn’t want to PAY!  Bottom line is the almighty dollar.  They care more about money than they do in covering a treatment for a child that has been suffering for the past 18 months!  Without this treatment Hannah has NO hope of getting better.

I don’t know that I have ever been this angry!  We pay HUGE premiums each month not to mention co-pays, co-insurance and deductibles!  All for what?  For getting something my child needs desperately but cannot get.  Blue Cross/Blue Shield has not dealt with me yet but they are fixing to.  I might be just a little-nobody but I am my daughter’s advocate and her only voice and they will listen to me and hear me ROAR…..I think Katy Perry did write that song for me!  I am not going to give up on my daughter getting a treatment that might very well heal her brain or at the very least provide her some relief from the inflammation that is keeping her from living the life she deserves to live!  In all honesty, I don’t know how much more her little body can handle.  There is so much going on in her body…..seizure activity, brain inflammation, no iron, daily fevers and low immune system to name a few.  We are having to pump her full of so many drugs just so she can exist….bandaids, no cure.  She is not “living” she is merely existing and that isn’t good enough….it is unfair and unacceptable when there is a treatment that could help.  I will do EVERYTHING in my power to make sure those making the decisions at Blue Cross know that I will not give up!  I will bug them, write letters, go to Insurance Commissioner, take to social media, go to the media…..whatever it takes to get our story out and tell of the injustices of the insurance company!  I will not quit….my daughter’s life depends on it!  Mark my words right here, right now……I WILL FIGHT with everything I have in me until the day I die for this special little girl who God entrusted to me.

Hannah is just an ID number to Blue Cross/Blue Shield but she is mine and her daddy’s hearts!  I know Blue Cross doesn’t have a vested interest in Hannah but by the time I am through with them they will know who Hannah is and that their denial of HD IVIG is unacceptable to this mama!

Word of warning Blue Cross/Blue Shield this mama lion is coming for you and you are going to hear me ROAR!

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I know the picture is a “male” lion but you get the picture!

 

Until next time…….

 

I Have No Words And A Walk In The Dark

This is a new one for me…..I think I am so overwhelmed right now with all of this new information regarding Hannah’s health that I just have no words.  I have been so trapped in my mind the past few days that I don’t know if I have really spoken much to anyone.  My mind sure won’t stop but no words will form……

We went to Tampa earlier in the week to meet with Hannah’s Neurologist.  Bottom line is this…..Hannah’s “official” diagnosis that people in the medical field recognize is “autoimmune encephalitis.”  Frankly, it is PANDAS with a name that doctors, hospitals and insurance companies believe truly exists.  With that diagnosis, we received the advice of treatment that we were hoping for; although with that treatment the risks are far greater than I had imagined.  Hannah needs High-dose IVIG.  IVIG is Intravenous Immunoglobulin that is used mainly for people with low immune systems, which Hannah has as well.  But, the difference between IVIG for low immunities and encephalitis is the dosage.  With IVIG that is used for immune suppressed patients it is done at a much lower dose, usually monthly, as an outpatient procedure.  With autoimmune encephalitis it is a much larger dose done in-patient over 2-consecutive days.  Usually IVIG is done monthly for years when dealing with low immune systems.  When dealing with autoimmune encephalitis it is a “walk in the dark,” as our Neurologist told us on Tuesday.  In other words….we have no clue how many treatments Hannah will need.

The past 18 months has been a “walk in the dark,” and it appears that treatment will be as well.  This is very disheartening to this mama!  It is a guessing game and when you are dealing with your child’s health there is no game in that!  The side effects to High-dose IVIG can be pretty bad; and in some cases downright horrific!  We have no way of knowing how Hannah will respond and that is scary for us.  We have been told that since steroid therapy works wonders for Hannah; that this might also, although it might not work either.  We have no guarantee of anything.  This is what I know…..it may put Hannah in remission, as there is no cure for this.  It may not work at all or it may make her significantly worse!  That is all I know.  With that said, we also feel that we have no other choice but to try it.  Of course all of that depends on insurance approving it!  That might be a long and difficult process in itself.

We had hoped to be able to stay here in town and have this treatment done, especially since we don’t know how often she will have to have it; but we will not be able to do it here.  We will have to go to Tampa for all the treatments.  That was not what our hopes were but Tampa is better than other places, I suppose.  I guess it could always be worse.

At this time, we have submitted everything to our Neurologist at All Children’s Hospital in Tampa and he will be fighting with the insurance company on our behalf.  Once insurance approves the treatment we will head to Tampa to have it done.   Whether she needs one treatment or 100 treatments that is where we will be.  Hopefully between treatments we will be able to be here at home.  For this treatment to work properly though, Hannah will live in “our little bubble.”  Being around germs or sickness would set her back and my number one goal will be to protect her from catching anything.  Again, a walk in the dark as we don’t know how long it will take for this treatment to work or if it even will.  Our goal, our hope and our prayer is that this treatment (no matter how many of them she needs), will give Hannah back to us completely…..healed and whole!

Our specific prayer requests are:

  • If this is God’s will for Hannah to have HD IVIG, that insurance will not put up a fight but rather approve it quickly.
  • Our team of doctors and nurses that will be caring for Hannah will be kind, gracious and full of God-given wisdom and knowledge.
  • THIS ONE IS HUGE…..that Hannah will have NO side effects to this treatment.  That her body will respond perfectly and accept this Immunoglobulin like it is starving for it.  No pain, no headaches, sickness or the other more horrific side effects that I won’t get into here.
  • That the Lord, as He always has, will supply all of our needs while we are away.
  • For peace, strength, grace and mercy for Dennis, Hannah and me as we continue to walk this dark journey
  • No matter what…..God will use this as a ministry tool for Dennis and me to sing of His praises no matter how difficult the storm or how it rages.  That no matter what God will be glorified for His grace, goodness and love.

Thank you all for walking this dark journey with us, for praying for us, for encouraging us and for loving us!  Your prayers, friendship and love do not go unnoticed!  We are so very grateful!

We are not scared of scars, but we are so ready for the hurt to be over, the wound closed, the pain gone and a perfect healing for Hannah!

We are not scared of scars, but we are so ready for the hurt to be over, the wound closed, the pain gone and a perfect healing for Hannah!

Until next time……….

Taking A Ride On The Crazy Train

Oh my…..I truly feel like I am taking a ride on the crazy train all alone!  These past few weeks have about done me in and I feel like I am going crazy.  I hope this is a short train ride and I really hope it doesn’t have just one stop in crazyville.  This PANS/PANDAS diagnosis, seizure disorder, temperature dysregulation, low immune system, childhood vaccines not taking, among other things is about to drive me crazy; can’t even begin to understand how Hannah must feel.  Add to the mix dealing with insurance and then trying to determine if the treatment of IVIG is going to help Hannah or cause more problems (which I just found out on Friday is a real possibility), has made me well…..CRAZY!!

We have a wonderful group of doctors working with us and for us and I am thankful for that.  But, treatment for PANDAS is different from treatment for low immune issues and those 2 treatments could be counter-productive.  IVIG is the treatment for both but with PANDAS you do a high-dose IVIG and with low-immunity you do low-dose.  Using high-dose could have horrific side effects but using low-dose might just piss-off PANDAS causing Hannah to flare worse than ever.  Making her anger, aggression, rage, sadness, anxiety, OCD and tics unmanageable.  Once again, I find myself in a catch 22 and it sucks; to put in mildly.

Let’s not even go into my head at the moment and how truly lonely, angry, anxious and sad I really am.  I try my best not to be those things.  The loneliness is going to happen regardless.  Heck, I am stuck in my house 24/7 with a sick child.  My conversations during the day are limited to interaction with Hannah which is mostly the same phrases being repeated over and over by her.  Hannah’s vocabulary is limited but one of the symptoms of PANDAS is repetitive behaviors and language.  Hannah will say the same 10-15 phrases all.day.long and will continue to repeat them until I acknowledge her and give her my same response each time.  It is because her brain thinks so obsessively about things that she continues to say things over and over and over and over again.  That in itself is enough to drive a sane person batty and let’s not forget I am not known for my sanity.  So, the loneliness at times is overwhelming….I have turned into an introvert out of necessity, but I miss that girl I once was.

The angry part that brews is over so many things.  I am angry because this is my child’s existence.  She doesn’t get to live a life like other kids and that causes me lots of sadness and anger as well.  It is unfair and I hate it for her.  She can’t go out to dinner, play with friends or at this time even see other family members because we have had to totally isolate her.  I get angry at the lives other parents have…..date nights, mini-vacations or getaways with their spouse, girls nights and trips……all the things other people get to do.  I get angry at times that my husband has a life.  He gets to go to work, church, Bible study, out of town…..granted he has to do some of those things; but sometimes I do get very jealous.  Don’t get me wrong, I am happy for him….not at all mad about it but it has caused me some anger and jealousy lately.  Now, let me say this before whoever is reading this things horribly of me.  I am HUMAN!  I have all kinds of emotions and I feel them daily, but I will continue this life forever if I have to.  I know women out there that either can’t have children or have lost children that would probably do about anything to be in my shoes and I don’t take that lightly.  I am not complaining as I will do this until the Lord calls me home but IT IS HARD!  I will stay trapped in this house 24/7 if I have to.  I will do what I have been doing the past 18 months forever if need be.  I know it could be worse, but with that said it doesn’t change the fact that I feel….that I hurt and that I cry out to God everyday to fix this….not only for Hannah but for me as well.

I get sad and anxious when I see my little girl look like she is about to pass out because she is so pale.  I look at the dark circles under her eyes which tell me she isn’t sleeping well.  I see the way she holds her head and pulls her hair knowing that she is in pain with headaches but she can’t verbalize that.  I feel the heat coming off the top of her head full of fever and inflammation.  I see her press on her tummy many times each hour and I know her tummy hurts.  I see her sad, angry, alone and full of anxiety and obsessive behaviors and thoughts and it makes me sad and anxious for her.  This is truly heartbreaking and there is nothing I can do to help her.  I cannot fix this and it has absolutely broken me.  She is my heart, she is my world and without steroids she is not the same little girl I had 18 months ago.

Hannah has been on a steroid taper the last few weeks.  We are weaning her off right now and I am beginning to see her regress again.  All those behaviors and personality changes are coming back and I dread next Saturday when we are off the steroids altogether.  Unfortunately, steroids are bad for long-terms usage and would cause her irreversible issues.  So, it isn’t our cure, although I truly wish it was.  I have a feeling that the crazy train isn’t stopping anytime soon unless God reaches His mighty hand down and heals my daughter.  I believe that He can but so far, He has chosen not to.  I accept that…..I accept His plan and I will do this forever if I have to but in all honesty….I don’t want to.  I want my little girl healed.  I want her whole.  I want her back for good!

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Until next time……….

Lessons In The Valley

I truly feel in my heart that sometimes God has us walk in the “valley of life” to teach us.  Some people, especially me, sometimes only listen when we are walking difficult journeys.  I have told myself many times that if I would just listen and learn during the easy times of life I might avoid the more difficult ones; but that has never been easy for me.  I am a do-it-myself, take charge, don’t need anyone’s help, let me live and learn type of person.  I am not saying that is the right way to do things or to live; but it is who I am.  Changing that is proving to be more difficult than I could have ever imagined.  The few times I have decided to step back and let someone help, I am usually met with resistance or rejection and after doing that once or twice I resort back to my usual way of doing things, which is by myself!  Unfortunately for me, in the past, even by myself meant not even allowing God to teach me or use me.  I am definitely trying to do that part differently now, at least.  I prayed last night, “Lord, don’t let this valley we are walking be in vain.”  If nothing else, I want to show Christ’s love and share His peace with those that read this blog or that I may come in contact with.  If one person is changed for eternity because of our difficulty then at least this valley hasn’t been in vain.

I have learned and I am still learning several lessons in this current valley.  The past 18 months, has been nothing short of hell on earth for me; but I have tried to be intentional.  I have tried to be authentic and I have tried to listen to God’s voice and at least learn some things during this time.  Some of the things I am learning are just for me but some might help you, so here is a short list of what I think God is trying to teach me through this valley.

Lesson #1 – Don’t say, “it can’t get any worse.”  The moment you say that, it will!  I say this somewhat jokingly but it has proven true for me time and time again!

Lesson #2 – Stop living in the past.  This has been quite a difficult thing for me to learn.  I tend to dwell on the past (especially past mistakes) and I tend to hold anger, resentment and bitterness from those that have hurt me. I always do the “hindsight 20/20″ thing….”oh, if I had just done this, instead of that.”  That can be detrimental to your present and I have finally learned to stop blaming myself for past mistakes and I have learned to forgive.  Learned to let go of that old bitterness, resentment and anger from past hurts and started moving forward; which is absolutely freeing!

Lesson #3 – Don’t plan….don’t live in the future.  Just like not living in the past, we can’t live in the future either.  For the “planner” in me that is extremely difficult.  I have always been one to plan months and months in advance but with Hannah and not knowing how she will be minute-to-minute much less day-to-day; well, planning past each hour has turned into a big no-no for me.

Lesson #4 – It is OKAY to take a break!  It is okay to stay in your pajamas all day.  It is okay to sit down and watch a few minutes of a TV show.  It is okay to order pizza for dinner because you just don’t feel like cooking.  It is okay to get only the minimal amount of work done if you are too tired (emotionally, mentally and physically) to do much more.  I have found that on the days that I just can’t put one foot in front of the other that it is okay to give yourself permission to rest.  I can’t lay down and nap during the day but I can sit down and give myself a break for a few minutes.  I don’t have to go, go, go like I always thought I had to.

Lesson #5 – You cannot please everyone.  I used to be a “people pleaser.”  I am not anymore.  I have learned that no matter what you do or say, someone is not going to agree and you cannot live your life for others.  All you can do is what is best for you and your family.  Dennis and I have this saying….”nothing else and no one else matters except what is in our four walls.”  At the end of the day, the only thing that matters is that you have made the best decisions and wisest choices for your family.  The people in your 4 walls.  You will never please everyone so focus on what is best for you.  In our home it is Dennis, Hannah and me……at day’s end…..that is what matters.

Lesson #6 – Learn to say no.  This one is difficult for lots of people.  It used to be for me but it isn’t anymore.  I have no problem saying no for many reasons.  First and foremost….if anything interferes with Hannah, the answer is no.  If anything is going to come between me and the Lord, the answer is no.  If it takes away from Dennis, the answer is no.  I say no a lot, more than I ever thought I would.  I used to be the YES girl.  I would be asked to do something and the word no was not in my vocabulary.  Now, I am the opposite…..I rarely say yes anymore; but it was a process; although something I really needed to learn to do.

Lesson #7 – Sometimes God allows us to walk completely alone in our journey’s and struggles; our valleys.  I believe He allows this so we learn to depend on Him wholeheartedly.  It is easy to rely on others, until they fail you and I promise that they will at some point.  Relying on God, especially when you feel all alone is more difficult.  He isn’t tangible.  You can only hear Him speak through the truths of His word and when you cry out to Him in prayer.  Sometimes you can’t even feel His presence but He is there.  He will fill you with a peace that passes all understanding.  He will give you rest and the strength to face each day.  I have learned His mercies are new every morning and His grace is truly sufficient.

Lesson #8 – God’s timing is perfect.  Unfortunately, for the impatient person it is difficult to wait.  But, above all we have to keep in mind that God has a plan and waiting on Him and His perfect timing is truly what we want and need.  He has our best interest at heart.  I truly know that above anything else.  His love for us is infinite.  He is a kind, merciful and loving God.  Waiting on Him, albeit difficult, is exactly what we need to do.

There are many other lessons I am still learning and I still haven’t mastered all of the above.  I am still a work in progress but I am truly trying to listen and learn during this difficult time.  I know that God teaches me the best when I am in the valley and right now I am all ears!

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Until next time………

 

Why I Blog

I thought I would explain why I blog since my blog is different from most that you see out there. The majority of blogs that I follow are light-hearted, happy, good-times, funny family blogs with a few thrown in there that are more business oriented like photography, interior design and a celebrity or two.  I LOVE the blogs that I follow.  Some are people I know personally and some are people who I have never met, but so enjoy their writing.  I am definitely a blog stalker and truly enjoy reading them.  Unfortunately, for me, their stories are not mine.  I have a different story of which to tell.  I will be honest, I sometimes get jealous of the blogs I read and the lives these other people live.  But, our stories are different and that is okay.  I never would wish the journey we are living day-in and day-out on anyone and it brings me joy to read the blogs of those that are sharing the good, funny, heart-warming story of their lives.  Reading some of my favorite blogs gives me a refreshing break from my reality.

I started blogging for the sole purpose of keeping friends, family and prayer warriors posted on Hannah’s 3rd open-heart surgery back in August 2012.  I started writing in June of 2012 mainly for prayer request and for those that wanted to follow our journey to yet again another open-heart surgery.  I was going to stop but then I realized that I really enjoyed writing and it was a great way to communicate with others and document our continued journey with this special little girl.

As time went on I discovered I was blogging as much for me as I was to update others.  It is a form of therapy for me because we all know I need it, but really who can afford a therapist nowadays?  Furthermore, when would I have the chance to go?  My only free-time is between the hours of 7pm-10pm and you will find me vegged-out in front to my TV watching mindless shows!  So, in essence blogging has provided me free therapy which gives me the outlet that I need.

I also realized that I blog reality…..my reality, which isn’t rainbows, unicorns and sunshine.  In fact, it is more cloudy days with some rain and a few thunderstorms thrown in every now and then.  Once in a while the sun shines brightly but not as often as I would like it to!  With that said, I never want to come across as complaining; although I would be lying if I said there weren’t times that I was bitter and resentful; because let’s face it, no matter our circumstances, we all feel that way at times.  This blog is also my only real means of being social.  I am predominately stuck here in my home and this is how I communicate with the outside world.  I get very little social interaction with others and this provides at least one-way conversations!  HA!  I laugh instead of crying at those last few sentences.  I have learned to be introverted but prior to being homebound with Hannah I was probably one of the  most extroverted people you would ever meet.  That since has changed due to our circumstances; but I am sure that extrovert is still there somewhere trapped inside and one day will be unleashed again!

I have thought many times about stopping, but then it hits me or maybe God is placing it on my heart that perhaps, just perhaps one day someone out there will stumble upon my blog and find encouragement.  Maybe they feel like they are all alone and they don’t know if they can go on and have lost hope.  They will be able to read that there is always hope in the sea of adversity and struggle.  Our circumstances may be completely different or the same, but they will know there are others out there fighting a battle alongside of them.  Maybe they will see the faith in which I cling to (even though at times it is by a thread).  Just maybe it will lead someone to Christ or help them find renewed faith in Him; His love for us and His plan.  Who knows…..maybe this is why I am going through all that I am, or maybe not, but if my circumstances can help someone else, then why not try?

So, those are the main reasons in which I blog.  I am not doing it for sympathy or to complain that my life is so bad; but maybe it is for someone to see that they aren’t alone and of course the free therapy for me is a plus too!

I saw this on Facebook the other day and it inspired me.....I pray for this kind of strength!

I saw this on Facebook the other day and it inspired me…..I pray for this kind of strength!

Until next time…….

Forever Friends, Superbowl Nonsense and Insomnia (AGAIN)

I wanted to write this blog yesterday but never had a chance to do it.  Hannah had a Cardiology appointment and among other things, I just didn’t have the chance to even sit at the computer yesterday until about 8pm and I was too tired at that point.

I am so thankful for special friendships.  I have dear friends who I have known my whole life and friends that I have met in more recent years and I am so very grateful for each one.  I have two friends that I have known my entire life practically, at least 40 years, and they are so dear to me.  There used to be 4 of us and if you have read my blog for any length of time you know that one of our “group” is in Heaven with Jesus.  The four of us (Angie,  Misti, Whitney and I) had a special bond from childhood all the way up until now.  Misti, Whitney and I were able to spend some of Angie’s last moments on earth with her and that is a memory none of us will ever forget.  We surrounded our dear friend, held her hands, hugged and kissed her and had the rare opportunity to say “see you soon” instead of goodbye.  Not many friends are given that opportunity to be there and say all those words that I think we want to say throughout a friendship but never do.  I am so grateful to all of Angie’s family that allowed us that time with her, even though they wanted to not leave her side for one minute.  But, their selflessness allowed us time with our forever friend; and we are all grateful for that.

Since Angie’s passing I think Misti, Whitney and I have gotten even closer.  They are never far from my thoughts and I pray for them and their families daily.  We each are walking different journeys but I know we all are just a phone call, text or FB message away.  They are extremely busy.  They both have large families (Misti has 3 children and Whitney has 5 children), they both homeschool, are involved in their churches, run their homes like you would not believe.  They are both extremely organized and I stand in awe at all they accomplish on a daily basis when some days I don’t even get out of my pajamas!  No matter how busy they are though, they sensed a need in my life.  They knew the burden I was carrying and the hurt I was feeling and they dropped everything to minister to me Saturday night.  They waited until I got Hannah to bed and then came over with cheesecake and gifts and spent time with me.  Allowing me to cry, speak openly and honestly; without judgement, listen to my broken words and heart and just love on me.  We shared what was going on and we laughed a lot (mostly at Misti), but those stories are for us only.  We have a friendship that is so rare and I am so grateful to have these 2 girls in my life.  I know anytime we are together we feel Angie.  We miss her greatly but we know she would want us to be there for each other until we can all be together again in Heaven.  I know Angie was smiling down and was with us in Spirit.  So thankful for forever friends…..a friendship that time, distance or busy lives can never separate!

Me, Angie, Whitney and Misti

Me, Angie, Whitney and Misti

Now…..on to my view of the Super Bowl.  It is NO secret that I despise football.  I think it is stupid.  A bunch of grown men chasing, running and throwing a ball down a field and in the NFL, they make an insane amount of money to do it.  Makes absolutely no sense to me.  I know I am mostly alone in my feelings, but they are my feelings and I have the right to them.  I did not watch the Super Bowl.  I had better things to do like catch up on General Hospital that I had saved on my DVR.  I did, however, record it so Hannah could watch Katy Perry do the halftime show.  For the record, we love Katy Perry, especially Hannah and I think she did a great job and we enjoyed watching that yesterday while we ate dinner.  One of my favorite shows is the Blacklist and it was coming on right after the Super Bowl.  I wasn’t going to stay up to watch it but I wanted to make sure the DVR came on to record it.  So, I had to sit there at the end of the game and watch.  I saw that Seattle had the ball and the great catch that the player made way down the field and I thought to myself  “wow, Seattle is going to win.”  Then, I saw the interception that the Patriots made and I was shocked.  I didn’t care who won the dang game but that was pretty impressive.  THEN…..I saw the fight break out.  A bunch of grown men who chase a ball for a living acting like 3 year olds on a playground not playing nice.  Where was the sportsmanship?  These are the men that young kids are looking up to?  It was ridiculous!  I was sitting there with my jaw dropped thinking that both teams should have been disqualified and the award given to the Dallas Cowboys!  I say Dallas because if I had a team it would be them because of Emmitt Smith, Deon Sanders and Troy Aikman….yes, in the 90’s I did enjoy football for a few years!  I digress……I think it was really ridiculous that these men behaved like a bunch of toddlers!  Now, I know there was too much testosterone and adrenaline on that field but for Pete’s sake…..grow up and act like men!  What seriously cracked me up afterwards was Tom Brady receiving the MVP Award and they gave him a Chevy Colorado truck.  His face said it all.  Here is a man who probably makes $40 million a year and he is married to the highest paid model in the world.  She probably makes more than him and they give him a Chevy truck?  It was probably an insult…..I would be surprised if he even would drive a Chevy.  He looks more like the Range Rover or Mercedes type guy to me.  The look on his face was priceless!  HA!  That stupid game couldn’t get over soon enough for me!  When it finally did I was able to make sure the DVR started recording on time for the Blacklist and go to bed.  If you have never seen the Blacklist, you should…..BEST SHOW on TV!

brady

This isn’t the fight picture, couldn’t find one…..I just don’t see the infatuation with football!

 

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Best show! I can’t watch it until Dennis gets home though and it is driving me crazy! This is one Dennis will actually watch with me!

Hannah has insomnia again.  Thanks to the steroids.  We doubled her dose of steroids and it has truly helped the rage and aggression but on the flip side, it gives her insomnia.  Last night she slept from 7:30pm-11:30pm and was then up until 6am when she FINALLY fell back to sleep.  Now, even though the steroids are working, the lack of sleep will be the thing that does her in!  So, prayers appreciated that our doctors can figure out something that will work without insomnia being an issue.  Hannah needs her sleep and frankly SO DO I!

Until next time………