Just STOP It

Oh my stars…..here is a rant for you:

If you want to feed your child candy bars and chocolate milk for breakfast, do it.  If you want to feed your family only organic whole foods for every meal, do it.  If you want to drink wine with every meal, do it.  If you feel the need to co-sleep with your child, do it.  If you want to never have children, that is your choice.  If you never want to get married, that again, is your choice.  The point to this post is….whatever works for you, your child, your family…..DO IT.

STOP the dang judgment, just stop it.  Your path is not anyone’s path, but your own.  No one is walking in your exact same shoes, just like my journey is mine alone.  What may work for you, won’t necessarily work for me and visa-versa.  If you want to diet, exercise and eat healthy, by all means, do that.  If you want to eat out every meal, go right ahead.

I am so sick of the unsolicited advice, recommendations and criticism that people give.  Okay, so if you post something on Facebook, it leaves you open to whatever comes your way.  Good, bad, indifferent; that is on you.  But, if you are sitting there minding your own business and someone sends you a private message criticizing your choices for your family, that is nothing but pure hatred and unsolicited judgment.

It is so funny to me that people are so ignorant.  Educate yourself about someone’s ailments before you give them your two cents.  AND, only give your 2 cents out of love, encouragement and grace.  None of us knows journey’s except our own.  I am an expert in my journey, not yours.  Just like you are an expert in your journey, not mine.  Don’t assume you are helping me when you criticize me…..you are only hurting yourself.  I will not respond to ignorance.

The idea of germs building the immune system, I get that.  Heck, I received 4 allergy shots per week for 5 years hoping that I would build an immunity to the many things I was allergic to.  I was injected 4 times a week with the exact things I was allergic to.  So, I get the science behind building immunity.  BUT, when you don’t have the components in your body to build immunity or keep your immunity built, no amount of germ exposure is going to help that; in fact, it will do the opposite and make you sicker.  That is where we are with Hannah.  She has no T-cells (these are the cells in your body that fight infection).  She has low IgG, IgM and IgA, which is what makes her immune-compromised and she has no antibodies from her pneumococcal vaccine that she had as a baby.  And, yes, she had ALL of her vaccines as a baby, but her body has since lost the antibodies from some of those vaccines.  That happened since PANDAS hit.  Now, could we re-vaccinate….yes, under normal conditions that would be the recommendation.  But, with PANDAS, if we re-vaccinate that vaccine will travel right to her brain, crossing the blood-brain barrier and making her much worse instead of better.  No more vaccines for Hannah……EVER!

Now, that I have explained that…..do not think that exposing Hannah to more germs will help…..it will not.  It will make her worse.  Furthermore, we believe now that she is likely a strep carrier.  Hence, the viral infection she got from Dennis, activated the strep that remains dormant in her body.  So, she can get something as simple as a basic viral infection and it will turn into strep; which for Hannah could have dire consequences.  So, there you have it.

I am so sick of unsolicited advice……I don’t mind if it is given in love and the “just in case you haven’t thought about this” scenario.  But, to criticize me and the choices that DENNIS AND I (I emphasize DENNIS because he is part of this as well, seems though that I get all the criticism for all OUR decisions) are making for OUR family and OUR daughter will not be tolerated.  Just stop it……don’t worry about what you perceive others are doing wrong.  Worry about what is in  your own 4 walls…..I can guarantee you that the happenings in my 4 walls are way different from yours.

I love my daughter with all I have in me.  I am doing EVERYTHING for her best interest and well-being.  It SUCKS most of the time.  This isolation, loneliness, watching the world and fun things pass you by….but, you know what?  I do it to keep her safe, healthy, well and to protect her.  Not the way I want to live but the cards we have been dealt.  I feel like I do it to the best of my ability and I can straight up tell you that there are many people out there who couldn’t do what I do.  So, before you judge me and the way I take care of my family with all I have, worry more about your own life and taking care of your family to the best of your ability.

Do I want to do this all the time?  NO, but you know what?  I will……until I take my last breath.  I will do exactly what I am doing and I will never have regret nor will I question the choices Dennis and I have made because at the end of the day…..Hannah is still with us and I plan on keeping it that way!

Happy Freaking Sunday!

Until next time………….

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I Don’t Know How

“God surpasses our dreams when we reach past our personal plans and agendas to grab the hand of Christ and walk the path He chose for us.” ~ Beth Moore

 

I try so hard to keep this blog REAL….authentic and transparent, so it is difficult for me when I write blog posts like this one as it leaves me open for criticism and makes me vulnerable.  With that said, I know each one of us has some kind of struggle in our life. Whether those issues stem from jobs, spouses, ex-spouses, parents, kids, health issues, friendships….the list can go on and on.  I have never once thought “I am the only one with struggles.”  I write about my struggles, as I have said many times before, that this is therapy for me and also that perhaps someone, somewhere would find some kind of encouragement in my words as they try to handle their own struggles, challenges and trials.  With that said, this one is a hard one to write……

I am having a hard time.  I am missing life and living it.  Today has been H.A.R.D and it is only Monday!  Several things have already happened this morning that took me from feeling “okay” when I woke up to downright discouraged.  There are some things happening in our life, that even though I am “real and open” aren’t for publication, so suffice it to say, there are some things I refuse to talk about in my blog.  But, I will say this and so much of my struggle this morning stems from this situation:

We lost our tutor for Hannah a few weeks ago and I haven’t started working with Hannah and her schoolwork since; due to her being so sick with strep and the viral infection she had.  This morning was the day to begin and oh, how my heart broke.  You would have to know how PANDAS works in the brain and how the inflammation attacks the brain.  If you research PANDAS you will read that some of the most common problems listed are (and let me add that you must have several of these criteria to be diagnosed with PANDAS and Hannah has ALL OF THEM):

• OCD
• tics
• mydriasis (dilation of pupils)
• rage/aggression
• math skill deterioration
• ADHD symptoms (hyperactivity, inattention, fidgety)
• Separation anxiety (child is “clingy” and has difficulty separating from his/her caregivers; for example, the child may not want to be in a different room in the house from his or her parents) OR (in our case) separation anxiety from a place (mostly our home).
• Mood changes, such as irritability, sadness, emotional lability (tendency to laugh or cry unexpectedly at what might seem the wrong moment)
• Trouble sleeping, night-time bed-wetting, day-time frequent urination or both
• Changes in motor skills (e.g. changes in handwriting)
• Joint pains

Anyway, I typed those out so you can see what we are dealing with.  So, this morning Hannah and I sat down to do school work.  I don’t know if it was frustration, anxiety or what, but within about 10 minutes of working she started getting agitated.  Her handwriting (which was so good at one time) became backwards and bad.  Her “s” she wrote as an “e,” her “w” was a “m,” her “a” was disconnected (the circle and the line were not together).  The words were jumbled and sideways.  So, I stopped and went to math…..that was my mistake.  We were working on a kindergarten level (remember she is almost 12 years of age) and the easy math that used to be a breeze for her, is no longer easy.  She struggled counting the objects to add simple numbers…..I wanted to cry.

Her pupils became dilated (fight of flight response) and she pinched her lips tight together (I know what that means).  I instinctively jumped away before I got attacked.  I am at a  loss.  I said “let’s take a break,” as all she kept repeating was “be good girl all day long, be good girl all day long, be good girl all day long.”  She can’t handle it.  I let her get up from her desk, she sat on the floor and cried and cried and cried……I can’t console her.  I can’t help her.  I can’t fix this.  I just broke.  I waited until she got control (I put Elmo on TV and that helped), I walked out of her playroom and cried; probably some of the biggest tears I ever have.  Of course, remember…..there is so much more than just this going on; but this was what broke me.

I am at a loss…..I just typed that and the tears have started flowing again.  I am at a loss of how to help her.  I am at a loss of wanting and needing to live life again for all 3 of us.  I am at a loss of how to get her to the doctor she NEEDS to see who is located in New Jersey and to get the treatment she needs to fix this. We need help.  I think the reality of this life is sinking in (only has taken nearly 4 years).  I have 2 friends who have kids with PANDAS, Down Syndrome and Autism and I have one friend whose son has PANDAS and Down Syndrome.  Their kids are older than Hannah and I am sitting here watching……watching as they have suffered so much longer with this than we have.  Watching as they are struggling so horribly trying to heal their kids and healing isn’t coming; especially for 2 of them.  I will admit, I am fearful.  I am fearful of the future and fearful of what our options will be if we can’t fix this NOW.  My heart is breaking and I am literally torn.  I am torn between wanting to live the life I had planned and yet living instead the life God had planned…..that is hard to type, much less admit!  I mean, what kind of  “good Christian” is ever torn about living their plans versus’ God’s plans?  Told you this was a tough post……

My friend Penny posted this morning on Facebook…..

“God surpasses our dreams when we reach past our personal plans and agendas to grab the hand of Christ and walk the path He chose for us.” ~ Beth Moore

That hit me like a TON OF BRICKS!  For so long I have had dreams and plans and this life (the past nearly 4 years) has halted all of those dreams and plans and at times I feel as if we will never get back to living again.  When I read the above statement from Beth Moore, it hit me that I have to let MY dreams and personal plans go and learn to embrace this life God has chosen for us, but I will be honest…..I don’t know how to do that.  I have tried to accept and embrace this life and just when I think everything is okay and I can do this….something happens and it is like I have been punched in the gut again.  I want my dreams and personal plans to be surpassed by God’s blessings.  I want to accept and embrace this life and grab His hand and walk this path for His glory but I DON’T KNOW HOW.  You can say all day long, “I can do this.  I accept this.  I embrace this…” the words can flow out of your mouth, even knowing it in your brain but your heart…..oh the heart is a totally different story.  Maybe I am not strong enough.  Perhaps my wanting MORE and wanting to LIVE life is keeping me from truly embracing this.  But, how do you embrace a life of watching  your child suffer?  How do you embrace a life of watching your husband ache from heartbreak and worry and having to take 2nd place to your child that needs 100% of you 24/7?  How do you embrace living like a prisoner in  your home 24/7 with no end in sight; missing out on things and watching life continue to happen and pass you by?  (Again, this is hard to write, seems so selfish on my part, doesn’t it)?  How do you accept and embrace that completely….where your heart, mind and mouth are in sync and agree with each other?

I.AM.STRUGGLING…..I don’t know how to do what the above quote from Beth Moore says…..I want to…..but I truly don’t know how.  Again, this is as real and as raw, as authentic and transparent as I know to be…….I don’t know how to stop hurting, aching and longing for more.  I don’t know how………

Until next time……………

Passion Play and Healing

I have healing on my mind.  The miraculous kind that you pray and beg God for and you wait.  You wait to see what His answer is going to be.  I have been praying for a miraculous healing for Hannah the past nearly 4 years.  So far, His answer has been no.  I don’t know why and I truly try not to question Him and I definitely want His will to be done; but the human side of  me wants what I want…..healing for Hannah.

It isn’t the fact that I don’t think He can heal her.  I KNOW for a fact, He can.  He could lay His mighty hand on her right this very second as we are sitting here in her playroom and give her a miraculous healing where everything that is so “messed up” is whole again.  I have no doubt that He can, I just know for some reason He hasn’t, as of yet.  I am also too much of a realist to know He might not give her that healing that I so long for; not an earthly one anyway.

Sunday night, Dennis practically kicked me out of the house (in a good way).  First Baptist Church was putting on their yearly “Passion Play.”  Dennis had seen it 3 times already as he had to work each time; except for the last showing, which was Sunday night.  He insisted that I needed to see it, as it was that good and so he stayed home with Hannah (even as sick as she was, which made me hesitate going) so that I could go.

First, let me say this…..FBC Jacksonville knows how to do theater.  I believe this was the 7th year that they have done the “Passion Play” and it truly could be on Broadway.  The actors, singers, orchestra, crew, directors…..it really is spectacular.  Hard to put into words, you really have to see it.  The play starts at the Beginning of Creation and goes all the way to the Resurrection of Jesus and the Ascension into Heaven.  The stage/props/costumes really could make Broadway envious.  The story flows so well that you actually feel like you are really there and watching it first-hand.

I will admit I was somewhat emotional when I got there, only because the last 2 weeks have been so hard.  So, it was no shock that I had trouble staying dry-eyed even from the beginning.  There were several parts though that literally had me sobbing.  I tried to fight the tears but it got to one part of the play and I LOST it!

I don’t know the young lady that sang during this part, but she sang Sandi Patti’s song “In The Name of the Lord.” Her voice was amazing and the scene was Jesus (who by the way is played by Luke Whitmire.  He is phenomenal.  I seriously see Jesus in him as He plays this role.  His eyes, his smile, the compassion, the pain, the sorrow, the love…..again, you would just have to see it)……anyway, this scene is when Jesus is performing miracle after miracle.  He heals a lame man, a deaf girl, a man with leprosy, a boy possessed, a sick woman, so  many of the Biblical accounts of miracles.  I had tears streaming down my face UNTIL…..the dead girl.  You know the account in the Bible in Mark 5:21-43; where the little girl was sick and by the time Jesus got to her, she had already died…..oh, but JESUS……in verse 35 some people came from the house of Jarius (the home of the little girl) and were told to stop bothering Jesus as the little girl was already dead, but Jesus overheard them and said, “don’t be afraid, just believe” and then He went to the house and He brought the little girl back to life.  It goes on to say in scripture that the little girl was 12 years of age (almost the age of Hannah).  In this scene, the little girl was lifeless and then with the touch of Jesus’ hands, she was healed….alive…..miraculously.  I.SOBBED.

As I was watching this scene in the play, even though I had heard the Bible story many times all I could think of was my very sick little girl back at home.  How I wished I could walk her up on that stage and let Jesus heal her.  Now, before you think I have lost my mind and I am crazy……I know THIS was acting.  I know Luke (who played Jesus) was not really performing miracles on that stage, but like I said, it felt like I was there……in that day and at that moment…..and how I longed to have the chance to take my little girl to Jesus for healing.

There were many other times the tears fell in this 2 hours on Sunday night,  Watching Jesus beaten, crucified, his mother holding Him after He was dead…..heart wrenching that He would do all of that for me, a sinner.  THEN…..the resurrection……the hope that we have as Christians that He did as He promised by rising again and then ascending back up to Heaven to prepare a place for us!  The reality of that, the promise, the hope……what a much-needed reminder for my weary soul.

I came home Sunday night and Hannah was sicker than when I left her.  She was gagging, choking and eventually vomited.  This viral infection spawned from the strep has kicked her backside and I have never seen so much SNOT!  As Dennis was cleaning her up, I was stripping her bed (at 10:30pm) and silently I was pleading with God to hear me and heal my little girl.  As I watched Dennis and Hannah drift off to sleep hours later in his recliner I laid down on the sofa and pulled a blanket over me as the tears fell down my cheeks crying out to God to please touch Hannah and heal her.  It is not the first time I have begged and pleaded with Him for healing and it won’t be the last.  But going to that Passion Play reminded me that He can heal.  He is the God of miracles.  He loves Hannah.  He created Hannah.  He has a purpose for all of this, (I wish He would let me in on what that is), but I know with all I have in me, that He has a reason for it all.  Do I hate this for her?  YES!  Do I hate it for me?  YES!  Do I hate this for Dennis?  YES!  Do I wish things were different?  YES, absolutely YES!  But Jesus made me a promise.  He promised me that one day there will be no more sickness, no more pain, no more sorrow, no more death.  He promised to prepare a place for me (John 14).  The Bible says in Romans 10:9, “That if thou shalt confess with thy mouth the Lord Jesus, and shalt believe in thine heart that God hath raised Him from the dead, thou shalt be saved.”  That is all we owe Him…..that is all we have to do…..confess and believe and Heaven is our eternity.  What a peace and comfort that gives me.

Believe it or not, I have had some people say to me that I don’t really believe that God can heal Hannah because if I truly believed, He would do it.  I have also heard “you must have some unconfessed sin in your life.”  Oh friends, that is not how God works…..not the God I serve.  Healing WILL happen.  That is how I carry on. I know one day Hannah will get her perfect healing.  I know that healing might be a Heavenly one, and if I have my way, I prefer an earthly healing first, but the bottom line is……she will get her healing.  All God has asked of me is to be faithful and to wait on Him.  He will renew my strength and provide me a peace that passes all understanding…..I just have to trust that He is always faithful and He is always good.

This was years ago…..I think Hannah might have been 4 or 5 years old. This was taken at church….notice the sign behind her head……

Until next time……….

Sometimes Silence Is Golden

I am struggling.  Haven’t had much to say this week.  Hannah and I both have been sick and it has knocked us on our backsides.  If you are a mom, you know that when you are sick, you don’t get sick days from mothering, especially when your child is sicker than you are.  Dennis came home from work on Wednesday and I was laying down on Hannah’s playroom floor looking like death!  I am getting better, still not 100% but definitely on the upswing.  But, that isn’t the reason for my struggling.

I am angry.  AGAIN!  I go through this quite often.  I get sad, then angry, then acceptance sets in for a while.  Then, I repeat the cycle.  The anger usually takes awhile to creep up but then it hits like a vengeance and I have trouble just getting through the day.  I start to withdraw.  I find that I cannot do much with social media and especially Facebook, if I log on to “look around” the anger builds.  I am not angry at anyone, just circumstances.  This past week we found out more about Hannah and PANDAS and it has made us very sad.  More and more of the reality of this disease is setting in; the fact that this is most likely permanent.  The Autism that we know was brought on by the encephalitis of the brain (if you are in the medical field you can disagree with me all you want, but we are living it and Hannah had ZERO autistic tendencies prior to PANDAS and now it is so very evident in her behaviors and personality).  The once vivacious, happy, social, engaged little girl is riddled with repetitive speech and behaviors (seriously it is like living with someone who has severe dementia and I can say that as I lived through Alzheimer’s with my Grandma Stapp and have been around many people with dementia).

The walls of our home close in at times to the point I want to scream.  My ears hurt by the end of each day after listening to the same phrases over and over and over again in the only voice Hannah knows (which is extremely LOUD and high-pitched).  This is honesty at its rawness……I LIVE FOR HER BEDTIME.  Does that make me a bad mom?  Perhaps.  I love her with every ounce of my being but my heart aches daily and continually at this life that she has been saddled with.  The solitude, the isolation, the lack of friends (what are those)?  The illnesses that she gets after hardly any exposure to the outside world.  The daily fevers and tummy aches.  The sadness and anxiety she feels on a daily basis.  The tics (verbal and facial) and the OCD……when I say OCD, I am not talking about what so many of us have.  You know, checking light switches and locking doors.  I am talking severe, life-debilitating OCD….where her brain tells her to do things and think things that are not good and having no choice but to do what the brain tells her to do.  Intrusive thoughts, seeing things that are not there, the list goes on.

Anger…..yes, I am angry and no wonder Hannah is too.  She knows what she is missing out on.  Throughout the last 1-1/2 weeks she has said many times, “Hannah back to school, back to church when Hannah gets better.”   How do you respond to that?  She has been stating that for nearly 4 years now and all I can say is, “yes, baby as soon as you get all better you can go back to school and to church.”  That isn’t a lie but I don’t know that it will ever happen.  I am losing hope that Hannah will get her healing miracle, here on earth at least.  I know she will in Heaven, so I have that hope; but I so long for her to have an earthly healing……I keep begging God to give me the little girl we had prior to September of 2013 when this nightmare began.

So, my silence this past week of not doing much on Facebook or blogging is due to my anger.  I don’t have positive, uplifting things to say and sometimes in those cases silence is golden and the best policy.  I don’t want to be so negative but honestly the past week and a half has taken its toll on me emotionally and mentally.  The anger crept up and has grabbed a hold.  I will get over it…..I have many times before.  I just have to allow the Lord to soften my heart…..being still is the best way to do that.

Tomorrow is Easter Sunday.  It will be the 10th Easter Sunday that I have not been to church.  We have been to church as a family one time since Hannah was born on Easter.  I think she was 4 years old.  I feel like I am missing the ABSOLUTE most important reason to worship when I miss Easter.  I am not even a good Christmas or Easter church-goer as I have missed almost all of those services the past 11 years, but I know God knows my heart.  I know He is the only one who matters and I know He doesn’t care if I never step foot back in church (no Legalistic guilt in my life anymore, washed my hands of that years ago).  But, I do miss going.  Tomorrow represents the day where I no longer am a slave to my sin.  I have a Savior who paid the price on Calvary and ROSE again and has promised to prepare a home for me in Heaven.  My debt was paid in full and I will rest in that today knowing that this very long season of our life is just a second compared to eternity.  I long for Heaven.  I long for no more sickness, no more pain, no more heartache, no more sadness, no more PANDAS, no more immune-deficiency, no more anemia, no more heart problems, no malabsorption issues, etc, etc, etc….so, today through my heart ache and anger I am clinging to the hope I have in Jesus and Heaven one day.

I will snap out of this, but perhaps silence is golden right now……

Sorry for the poor picture quality but this was our 1st and only Easter together at church. Hannah was 4 years old…..

Until next time………..

My Weakness Conquered By His Grace

Jesus loves me this I know for the Bible tell me so little ones to Him belong they are weak but He is strong……..Yes, Jesus loves me. Yes, Jesus loves me.  Yes, Jesus loves me for the Bible tells me so.

A little child’s song with a very big message.

I am weak…..actually today not just mentally, emotionally and spiritually but also physically.  Hannah woke up yesterday with a viral infection (head and chest cold with fever, coughing and snot everywhere) on top of the strep infection and this recent PANDAS flare.  Now, she has passed her germs on to me.  It was bound to happen but I feel like I have been hit by a Mack truck.

As I laid in bed last night unable to fall asleep, I tried to pray.  You notice I said “tried” right?  Sometimes the words don’t come…..I seem to repeat the same things over and over and over again to God in prayer.  It seems so redundant and yet, there are no other words.  I find myself begging and pleading with Him.  Is that wrong?  I don’t know.  Fortunately, I know He knows my heart and I am so thankful for the people who are praying for us and interceding for us when I just cannot find the words.

As I laid their last night one phrase kept going through my mind though; I don’t know where it came from, God I am certain.  But I just kept thinking……His grace conquers my weakness.  I am so weak; yet He is so strong.  This is where all those years of being raised in church came in as I remembered several verses from the Bible I memorized as a child….

1 Corinthians 1:25 says:

Because the foolishness of God is wiser than men; and the weakness of God is stronger than men.

2 Corinthians 12:9 says:

⁹ And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.

My weaknesses (physical, mental, emotional and even spiritual) are nothing in comparison to God’s strength.  My lack of faith at times He covers with His grace.   It is okay to be weak and not feel strong….it is then that God’s own strength and grace covers you.  I will admit I wonder at times if my prayers are being heard.  I wonder why Hannah has had to struggle and suffer the majority of her life.  I question what God was thinking giving me a child with not only special needs but one who is so medically fragile too.  I doubt that I am good enough, strong enough or capable enough to do this forever. But, in all my doubting I always seem to press on, persevere and find the strength to push forward.  There is only one explanation for my ability to carry on…..it is God’s grace and His strength in my weakness.  It is because at times, He doesn’t just hold me, He carries me.  Those prayers from my prayer warriors being lifted on mine, Hannah and Dennis’ account.  The people out there who are hitting their knees to lift us up and stand in the gap…..that is how we carry on.  That is how we persevere.  That is how I can sit here and type this blog post, feeling like I have just been hit by a Mack truck and acknowledging that I am weak but He is strong.

What is God doing through this journey with Hannah?  I honestly have no clue.  But, as I laid there last night and thought about my weakness and His strength and the grace in which He covers me, I was finally able to pray something other than my typical cries of “please heal my child.”  I prayed this instead,  “Dear Lord, I don’t know what you are doing in our life, but I trust you.  I trust that you have a plan and a purpose and that you will be honored and glorified NO MATTER what happens in the future.  All I want to do through this journey is honor you.  Help me to honor you, help me to be able to carry on and be an example and a testimony for you through this.  Cover me with your grace and help our journey lead others to you.  Please let this count for eternity.”  My prayer is and will always be that God heals Hannah but I also pray that He will help me take our life and one day be able to minister to others walking the same path.  I refuse to allow our suffering, especially that of Hannah to be in vain.

Until next time……..

Update On Hannah: Wandering In The Dark

“Wandering in the dark.”  Those words spoken by our Neurologist each time we see him.  Oh where to start……I don’t even know.  I am having a moment of weakness right now.  You know, where the world is crashing down around you and you don’t know how to stop it.  Where you are seeing that THIS life you are living right now is perhaps your new normal and you are fighting against it with everything that you have.  Yeah, I am so not in a good place at the moment.

For those who don’t have Facebook and don’t know what is going on, we have had a really bad week with Hannah.  Here is what I wrote on Facebook on Wednesday:

Hannah woke up this morning with a 103 fever, very lethargic, pale, delirious and aggressive. About 20 minutes after waking up she had a Grand-mal seizure (and we just added another new seizure medication last night to her other one). I couldn’t get her in the car to go to the ER and frankly, I was scared out of my mind at what I was witnessing, so I called 911. Amazing group of men from Jax Fire and Rescue along with JSO showed up to my house. All very professional and caring. They were wonderful with Hannah and me too.

The ER doctor was amazing and our nurse happened to be a sweet girl I watched grow up at FBC. God was all over this trip to the ER. The doctor listened and probably thought I was a little out of my mind when I asked him for a strep test (but my gut told me strep was the problem). For those of you who don’t know a strep infection in a child with PANDAS is truly devastating and can wreak havoc with their body and brain. He did the strep test and lo and behold it was positive. How she got strep I have no clue as she is so isolated, so someone had to bring it in to her. I even texted Dennis from the ER and told him to go to Urgent Care right then to be tested for strep since he has been sick. He listened and it was negative. So, this just goes to prove having people come in our home can be bad due to germs that people carry. Anyway, I insisted on the shot for strep as I needed it eradicated quicker than a 10-day supply of Amoxicillin which doesn’t touch Hannah anyway.

The ER doctor also placed a call to our Neurologist in Gainesville and we are to follow-up with him tomorrow. I am praying that now he will be willing to do the MRI I have been asking for. It might not show anything new, but that gut instinct of mine wants it done.

I know I am not a doctor, nurse or even a medical professional in any realm, but I am a mom and I know my kid. I know she isn’t well and I knew today was bad. I am so thankful for our Pediatrician who was right there encouraging me and praying for me.

Sorry for the novel…..we are home. Fortunately the strep was treated with the shot. It may or may not cause a bad flare. Waiting to see as the next few weeks could be really difficult for us due to this strep, but at least we caught it and treated it. The seizures are still a mystery and they are scary. I am praying we can figure them out and some how stop them.

Thank you all for your calls, texts, comments, messages and prayers. Please forgive me for not responding to each and every one of them as of yet. I promise I will but right now I just need to tend to my little girl. I don’t know where I would be in this journey without Christ, my friends, my family and my prayer warriors! Thank you all from the bottom of my heart!

So, today was the appointment in Gainesville with our Neurologist.  Needless to say, from my first paragraph, it didn’t go well.  I take that back….it went as I expected.  I really love our Neurologist and I am thankful he doesn’t chalk all of Hannah’s seizures and other brain malfunctions up to Down Syndrome like so many of the others have done.  But, I think he is lost.  He just doesn’t know what more can be done.  This strep infection has caused another bad flare in Hannah.  The aggression, anger, depression, anxiety, tics and OCD have once again reared their ugly heads and he acknowledges that this is indeed PANDAS.  He acknowledges that there is inflammation in the basal ganglia part of Hannah’s brain which controls her behavior and personality.  He acknowledges that high dose IVIG and Prednisone worked for Hannah but isn’t ready to go that route again.  He said the “risks outweigh the benefits.”  We also talked about an MRI and he feels that even if it showed something in the MRI there is nothing that we could do about it that we aren’t already doing.  He has added a new seizure medication and wants to eventually try to wean one of the other seizure medications but first wants to increase her anxiety and tic medication.  It is all “practice” and playing with the right medications and dosages to make Hannah comfortable; right now, she is anything but comfortable.  She is restless and anxious, depressed and angry.  Frankly, I am too.  I don’t know how to do this forever, although I am beginning to see THIS is our forever.  I know God will carry us but in all honesty I just want it to be easy for us and not have to be carried.  I miss living…..I miss all the things we were able to do prior to Hannah getting sick.  I miss the hopes and dreams that we have had to let go because of this disease.  I miss life.  Today, I was supposed to run the Special Olympics Torch Run with Dennis and the Sheriff’s Office, but instead I was traveling to Gainesville to see the Neurologist just to hear nothing new.  I know, you might be sitting there thinking, “so what you missed a 5K.” Well, it is so much more than that, but that is just one of the many disappointments this PANDAS journey has cost us.  It won’t be the first and it certainly won’t be the last.

Please forgive my negativity……I am just angry at the moment.  Angry at this disease my daughter has been smitten with.  Angry at a stupid strep infection that I still have no clue where she picked it up from (being that we never go anywhere) and angry at once again no answers and no further treatment to help my little girl get better.  This flare will last now anywhere from a few weeks to a few months.  I am not ready…..I am so not ready.  Your prayers are greatly appreciated for Hannah and her healing and for my heart to not ache so much and perhaps an extra dose of perseverance for all 3 of us.

Until next time………

This Season Of Life…..The Struggle is Real

Forgive me for not blogging about  NYC again.  I really do want to finish blogging about my trip as I have 2 more days to account for.  I want to blog about them for me so I don’t forget a single detail but alas, I am struggling today (it is Sunday, after all) and it is my worst day of the week…..always, it seems.

I will be honest, the past 2 weeks have been difficult.  I had that fabulous trip to NYC where I was able to let my hair down, adult, not worry about anyone else but myself, no responsibility and just freedom to live.  Don’t get me wrong, I missed Dennis and Hannah immensely but I enjoyed living and being selfish.  Coming home and getting back in the routine has proven difficult for me.  I have done it, but inside I ache.  I just wish there was balance.  Where family life and living life intersected and we could do and enjoy both.  I know people say, this is just a season of life, but our “season” has gone on a very long time.  From the time Hannah got sick and we couldn’t get her well or keep her well, until now, it has been over 3-1/2 years.  I never dreamed we would still be in this “season,” and yet here we are.  I guess my fear is that this is permanent and we will never break free of it.

With the medical issues Hannah has and the complexity of trying to treat all of her issues I don’t have much hope (short of a miracle) of her getting back to 100% like she was prior to September of 2013.  I still pray daily for that, but I am a realist and know that we might not ever get that little girl back.

I have said many times that I miss living.  The saddest part is that I know Hannah misses it too.  The other night before she fell asleep she prayed her “normal” prayer with me and then added at the end….“Dear Lord, help Hannah’s fever go away, help tummy feel better, Hannah back to school, Hannah back to church, please, thank you.  I love you so much all my heart, in Jesus name, Amen.”  Broke my heart…..shattered it, actually.  To think that she “gets it.”  She knows what she wants and what she is missing out on because she is sick.  She knows who to ask to help her get better and yet, she still loves Jesus with all of her heart even though He hasn’t answered her prayers with a “YES” yet.  So, as much as my heart aches for me, it aches doubly so for her.   I have said a billion times that I will do this forever.  I will love her and take care of her to the best of my ability but that ache to live life is always there.  Some days it is worse than others, like today.

Don’t take for granted your health or your child’s health.  Don’t take for granted the ability to get up, get ready and head out the door for work, church, social activities and fun.  Don’t take for granted a date night with your spouse or significant other.  Don’t take for granted not having to be so picky (due to medications, sleep issues and seizure activity) about the people you leave your child with for a date night or a weekend getaway.  Don’t take for granted being able to go out to dinner as a family or to the zoo or an amusement park.  Do those things and do them happily.  Enjoy the moments you have and the things you can do because you are all healthy and well.  Yes, my life is different from yours, but please enjoy your moments, cherish them and thank God for the blessings He has given you to be able to go, to do and to live.  I pray every single day that this “season of life” isn’t forever but if it is, even though the struggle of wanting to live life is real for me, I will do it to the best of my ability and I will thank God always for a little girl who has more faith in her pinky than I do in my whole body.  A little girl who has taught me more about life in her 11-1/2 years than anyone has taught me in my 45  years.  The struggle, the daily grind, the routine that gets so old……yet, a little girl who lives it without complaining, through the struggle and sickness, with the strongest faith I know……..

One of my favorite pictures of my sweet girl!

Until next time……….