Don’t Wake Me Up

If I am dreaming, don’t wake me up!  Don’t pinch me because this reality is SO much better than what we had been dealing with!  This past week (Monday thru today) has been the best week we have had in 21 months!  Hannah has been BACK without the use of steroids!!  She isn’t 100% but she is manageable, fun, happy and loving!  I WILL TAKE IT!  On top of that, Friday and Saturday she actually BROKE her fevers!  First time in 21 months that she has been without a low-grade fever all.day.long!  It didn’t stay broken each of those days, but for the first time, she would sweat and I took her temperature.  On Friday it was 98.6 and Saturday it was 97.4!  Hannah’s baseline temperature was always 97.7!  I squealed with delight and Hannah looked at me with her big blue eyes and said, “no more fever mama, Hannah go back school and church now.”  Broke my heart but also gave me hope that some day her dream of going back to school and church might come to fruition!

I, of course, texted her Pediatrician and we agree that it appears HD IVIG is finally working.  We still have a long way to go.  Now, that we see it working it will continue for possibly a very long time.  After this next treatment we will come home and then two weeks later go back to Tampa to meet with Hannah’s Neurologist.  At that time, we will discuss all four infusions and decide where to go from here.  If IVIG is truly working (which we think it is), I think it is very likely he will order 4-6 more months of infusions and we will then meet with him again.  So, as you can see we still need your prayers, as we need healing to continue.  We cannot take the chance of stopping IVIG too soon as we don’t want Hannah to regress.  Our prayer is that this will put PANDAS into remission and also treat her immune-deficiency to where we can be out and about in the world once again.  It will be awhile before that happens though.  We want to be certain that we are on a healing path.  We are pretty certain as well, that there is an underlying autoimmune disease that we have figured out yet (hence the on-going fevers for 21 months).  IVIG is helping that as well and we need that to continue.

Please pray for wisdom for our doctors; we are still dealing with lots of issues including severe anemia and possible adrenal crisis due to all the steroid usage.  Hannah still has a heart that we have to monitor every 6 weeks due to her heart defect and one of the medications she is on and she has a seizure disorder also.  We have lots going on and we covet your prayers for her, for us and for all of her doctors!

We are seeing God’s hand, we are feeling His peace and we are giving Him all the praise for the way He is working!  As I went to sleep last night I thanked Him for this “break.”  I asked Him to let it be permanent and to let this be healing taking place.  But, I also prayed for His Will to be done; not mine!  His plan is perfect and no matter what, He will carry us through.

We are indeed grateful for the prayers, support, encouragement, friendship and love so many have shown us along this journey….some of you have been with us from the very beginning when we found out at week 17 of our pregnancy that Hannah was “not going to survive birth,” (doctor’s words, not mine).  See, God had a plan then too!  This has been long journey of many highs and lows, ups and downs, twists and turns and a few upside loops thrown in there.  But, through it all God has been faithful and I will sing His praises and of His goodness forever!

forever-god-is-faithful_1920

 

Until next time……..

New Information, Research And Blessings

I seriously have not had a chance to blog since my last post.  Things have been confusing, frustrating, depressing, hopeless, anxious and then turned interesting which put me in “research mode” or what I refer to as “my coping mechanism.”  I am a researcher by nature but especially when I can’t do anything else….it is the one thing I can do; so I run with it.  I read, I study and I research.

There is so much about what Hannah is going through that NO ONE understands.  Doctors are even in the dark and it is frustrating for them, for the parents and especially for the child going through it.  I have learned a lot (of course none of it I wanted to learn).  I would much rather have had none of this happen, but it did and I have tried to do my due diligence and really understand all I can about PANDAS, seizures, adrenal insufficiency, anemia, heart defects….the list goes on.  From Saturday May 16th until Sunday, May 24th it was hell on earth.  Hannah raged….she attacked herself and me.  She was angry, sad, anxious and of course you combine that with her extreme OCD and tics….well, it isn’t pleasant or peaceful.

I was doing research and found an article that was very disturbing.  It was on the effects of Miralax on children that use it long-term.  Every doctor that I have spoken to has told me that Miralax is completely save to use.  Three years ago, Hannah’s GI doctor put her on a daily adult dose of Miralax because of extreme constipation.  I followed what the doctor ordered and we have continued to use it until last Friday!  I found an article that the FDA is researching the “Neuropsychiatric effects of long-term Miralax use on children.” It intrigued me as I read the “symptoms” that have been reported and then it sickened me!  All the symptoms I read were the symptoms of PANDAS, low iron (anemia), seizures, inflammation of the brain…etc….all the things we have been dealing with all this time.  I am not saying that Miralax is to blame; but it sure is fishy to me.  So, since Friday Hannah has had NO Miralax.  She raged until Sunday night but then Monday, Tuesday and so far today she has been PERFECT!  Her OCD is still off-the-chain, still having some tic issues and a little anxiety.  But she has been happy, joyful, and peaceful!  Now, again, it could be that the “flare” since IVIG has subsided and just be coincidental that I took her off Miralax as the flare was fading but I am keeping a close eye on this and journaling it…..if Miralax is the culprit of ALL of this I am going to scream and probably cuss and possibly file a lawsuit.  I have actually placed a call to a doctor at CHOPS in Philadelphia who is conducting the FDA study on the effects of Miralax on children.  Now, taking her off the Miralax has caused her already bad bowel issues to get worse but I will find another way…..we will never use Miralax again!

We have had some blessings come our way too and Dennis and I are so very grateful for the way people have stepped up to encourage us, support us (emotionally and financially) and pray for us.  We have been given money to help with expenses and medical bills.  We have been brought food and gift cards for dry cleaning, Publix and restaurants.  We have been sent cards and gifts for Hannah.  People have showered us with so much.  Our number one desire is to one day be past all of this and pay it forward to someone else that will walk a difficult journey.  We are indeed grateful for all that has been done on our behalf…..there have been showers of blessings and we are so very grateful and thankful for each one.

Another blessing that is in the works is a room makeover for Hannah.  A dear friend of ours turned our name in to an organization to do a complete room makeover for Hannah since she spends all her time at home.  I was contacted a few weeks ago and the process of it has started and will most likely happen in the next couple of months.  We are so excited that Hannah is going to have a fun, relaxing, sensory-free, quiet place to play and sleep.  I can’t wait to share the finished product with you.

We are continuing on this journey with IVIG and at the end of June we will meet with Hannah’s Neurologist to discuss the effects (if any) of IVIG and how to proceed.  We are not sure at this time if we will have one more infusion or 200 more but I will keep you posted on that as well.  At this time, we are proceeding as we have the last few months with our travel to St. Pete every 4 weeks.

Thank you all for walking this journey with us, praying for us, encouraging us and supporting us!  We are so very thankful!

The doc is in!  Barbie needed a check-up and Doctor Hannah is on duty!

The doc is in! Barbie needed a check-up and Doctor Hannah is on duty!

This smile melts my heart especially when we went 10 days with no smiles at all!

This smile melts my heart especially when we went 10 days with no smiles at all!

Until next time…….

 

Hell Week and Lies

I don’t even know where to begin writing….never usually at a loss when it comes to verbalizing all that has happened but my head is so jumbled.  I am going to try to find the words even though they aren’t flowing in my mind and through my fingers as they usually do.  If this post is all over the place, you know why.

We left last Wednesday for Hannah’s third round of HD IVIG infusions.  She did pretty well with the infusions on Thursday and Friday.  Dennis left early Saturday morning to fly home because Hannah and I had to stay for a doctor appointment the following Tuesday with the new Immunologist.  So, it was pointless to travel home to then turn right around and drive 4 hours back to St. Pete.  Dennis had to get home to work so we parted ways.  We thought it would be okay as Hannah was on high doses of steroids after IVIG as we were tapering off of them.  Hannah is usually at her very BEST on steroids so we never in a million years thought we would have struggles.  We were very wrong!

The first morning of IVIG before the weekend.  One of the last hugs I got before the nightmare began!

The first morning of IVIG before the weekend. One of the last hugs I got before the nightmare began!

Saturday morning Hannah did great but after lunch it hit….the rage, anger, aggression, anxiety and over-the-top OCD.  Now, when people say OCD, most of the time it isn’t as severe as what Hannah has.  I am known to have OCD tendencies myself but nothing like Hannah does due to PANDAS!  This OCD is unmanageable.  It is frightening, harmful and over-the-top out of control!  It does consist of turning lights off and on and closing doors and drawers but that stuff is not the problem.  It is the repetitive talk and especially harmful talk like “hurt mommy, hurt Hannah, hurt people, kick people, hit people, no good girl, scream more, pull hair, not nice,” etc.  She says phrases like that and unfortunately acts on it as well.  She will find a part of her body (finger, top of head, inside mouth) and bite and scratch until it is bleeding.  She will not stop…..and the more you draw attention to it, the more she does it with this look of “try to make me stop” in her eyes.  She will find a few phrases and repeat them non-stop…..”mommy get her bath, mommy go Publix, Hannah eat now.”  When I say she repeats things…..I don’t mean once or twice, I mean 400 times and I am NOT exaggerating!  It is insane!  That is just a little glimpse of the OCD.  Let’s not even talk about the rage and aggression because it is horrific!  She hurts me and herself and she is so very strong.  Kicking, biting, scratching, hitting…..all you can do is get out of her way or hold her wrists standing behind her (so she cannot kick you) until it passes.  I never in a million years thought we would be dealing with this kind of aggression or rage.  Hannah is so very sweet and loving; calm natured, but when that inflammation hits her brain she is a completely different child and it is heart wrenching!

Alone…..I dealt with her rage, anger, aggression, anxiety and OCD all weekend long alone.  Everytime I would go to touch her she would attack.  The only thing that helped was her iPad.  I would set it up in the bathroom just to give her a bath so I could do it without being attacked.  I would play music videos.  As she watched them I cried, prayed and bathed her as quickly as I could.  Giving her medications each morning and evening I again used her iPad as a distraction and putting her to bed instead of being right by her bedside praying with her, I was in a chair out of reach.  If you are a mom, can you imagine not being able to touch or console your child without fear of being attacked?  There are no words…..I just know in my heart it isn’t her….she doesn’t know what she is doing and I beg God to heal her brain so this will be a distant memory soon.

We went through the whole weekend locked up in a hotel room because I didn’t dare take her out.  We tried once to go for a walk and that was a mistake so we stayed in the room….alone and sad.  Finally, Tuesday got there and I got us ready and we headed to the Immunologist.  Hannah was doing pretty good that morning with no rage and was compliant so I was thankful.  We even texted Dennis a picture waiting at the doctor’s office all smiles and hugging!  I thought we were past the worst of it.

Waiting in the doctor's office on Tuesday.  The first day since Saturday that she smiled and let me this close to her.

Waiting in the doctor’s office on Tuesday. The first day since Saturday that she smiled and let me this close to her.

We were praying for help from this doctor.  Some hope for more treatment that would help bring Hannah back to us for good not only with PANDAS but her immune-deficiency.  We waited nearly 3 hours for the doctor to even come into the exam room and during that time I watched Hannah decline in her personality and behavior.  At one point the Resident came in to take a brief history and as soon as he left Hannah attacked me viciously.  The doctor finally came in and Hannah was very pale and lethargic.  She did a quick exam and said, “well there is really nothing I can do for you except re-vaccinate her for her pneumococcal vaccine (Hannah has no antibodies from that vaccine as a baby).  Problem is if we re-vaccinate her, it will go straight to her brain and she will flare just like she did with the flu shot last year.  I looked at the doctor and refused the vaccination (judge me if you want but there is no way my child is getting anymore vaccinations EVER!)  Read about PANDAS and you will know why.  I then asked her about her low IgG, IgA and IgM and she said, “well you are already receiving the treatment for immune-deficiency with IVIG so there is nothing more I can do for you.”  I had tears welling up in my eyes and asked her why she even saw us then knowing why we were coming?  She had all of Hannah’s information prior to our appointment and had plenty of time to look at her records and labs and should have never scheduled the appointment.  I was livid.  We spent an extra 4 nights in the hotel that we didn’t have to.  We could have all come home on Saturday together and I wouldn’t have spent 4 hellish days trapped with a raging child in a hotel room.  The doctor then told me that we could do new labs after IVIG was completed for 6 months.  So, we have to wait for 6 months after the last dose of IVIG (which we don’t know when that will be) before you can do more testing?  Completely unacceptable to have even seen us!  I gathered my things and went to take Hannah’s hand and Hannah attacked me scratching me and hitting me right in front of the doctor.  The doctor looked at me and said, “let’s see you again in 6 months.”  Don’t hold your breath lady!  Never again will I return to a doctor that stood there and refused to help me as my daughter attacked me viciously.  By this time I had tears streaming down my face and NO ONE said a word….the nurse, the doctor, the receptionist…..all seeing this, just starred!  I was mortified!

It didn’t end there…..I called the hotel for the shuttle to come pick me up and Hannah continued to attack me in the shuttle.  The driver was so sweet and asked if he could do something.  I said, “just put the pedal to the medal,” which he did.  Walking in the hotel lobby Hannah went berserk….people all in the lobby just stopped and starred.  I held Hannah by the wrist and just said, “it’s been a bad day” and kept walking to the elevator breaking down in tears when the door closed.  I was embarrassed, sad, angry and heartbroken!  I felt like my heart was about to explode!  I got Hannah inside and gave her some juice while she sat on the potty.  I called Dennis and cried hysterically telling him I was so DONE!  “I don’t know how to do this anymore…..I don’t know how to go on……I don’t know what to do……my heartaches…..I am so very broken.”  All he could do was say, “baby, I am so sorry….I am so very, very sorry.”  I know I sounded suicidal….I promise, I wasn’t even though I will be the first to admit that I can’t wait for Heaven!

Long story, short…..we made it home yesterday!  Hannah and I made it in 3 hours and 40 minutes from St. Pete to the house!  Yes, I think I went 90mph the whole way home; well except through Orlando as traffic slowed me down to 70mph!  HA!  Hannah was manic and then lethargic the whole way home.  I did have to give her a Clonzepam (Valium) after she tried to open the door of the truck heading down I-4!  Thank the Lord for Child Safety Locks!  Yikes!  I came home to a compassionate husband, a clean house, clean laundry, dinner and chocolate covered sea salt caramels.  Kudos to him for loving me even when I am unlovable!  The stress of this life is almost too much at times…..it wears on you in every aspect of your life; especially your marriage.  But, I am thankful for a husband that sees past his own needs and sees how broken and tired his wife is and only cares about me!  One day, (I keep promising him), it is going to get better and we will get “us” back.  I long for that.  As much as we love and adore our little girl…..we have lost us and that is devastating!  Thankful for a Godly husband who is sticking this out with me……no matter the cost we are both paying.

So, that was my week from hell…..how was your week?  HA!

Now, quickly I need to address something.  I found out after I got home that someone in my life (who will remain nameless) continues to spread lies to so many I care about.  I will not go into details but I will say this.  Two years ago an incident happened that I have kept my mouth shut about and so has Dennis; and we will continue to.  But, I want to caution you…..if someone says something to you that you don’t think can possibly be true knowing mine and Dennis’ character, PLEASE do not believe it, no matter who the person is.  If you hear something and question it, please come to Dennis, me or even my parents to clear the air.  There is an individual who continues to lie and manipulate anyone that they possibly can against Dennis and me.  All I ask is that you get all the facts before you believe anyone that wants to slander us.  In fact, no matter who gossips…..it is just that…..gossip!  Sometimes people think gossip and lies make them look better so they continue to do it.  Heck, I have gossiped in the past and I say that with much regret and know it was wrong….who hasn’t?  But, before we believe everything we hear……remember sometimes people are just mean and bitter and want pity.  In this case, I swear on everything I hold dear…..they are lies!  It took a long time for me to “forgive” this person and then I get home from this trip and I find out even 2 years later this person is still at it…..I have nothing to do with this individual but it hasn’t stopped them.  So all I ask is that you please consider the source and know that Dennis and I are better than the lies this person keeps telling.

Sorry I had to say that as now some of our dearest and most faithful friends are being pulled into this and I will not continue to sit by and watch the bitterness and resentfulness of ONE individual corrupt mine or my husband’s character!

Until next time……..

Trying To Understand

Nothing sweeter than the father/daughter bond.  I caught this moment during IVIG between Dennis and Hannah!

Nothing sweeter than the father/daughter bond. I caught this moment during IVIG between Dennis and Hannah!

I know there has to be a lesson to learn, a life to touch; one to change for eternity or a blessing in all of this.  I just wish whatever the reason for Hannah being so sick would be revealed and accomplished NOW!

This journey we are on only seems to get more difficult.  For every step forward, we seem to then immediately take 4 steps back.  I am so very weary.

We came down to St. Pete on Wednesday and Hannah had her HD-IVIG on Thursday and Friday.  The only issues with the infusions themselves was a little indifference at times from Hannah; mainly some irritability but it was manageable.  Who wouldn’t be irritable having to sit in a chair for 8 hours each day hooked up to a machine pumping foreign substances into their body?!?  A child no less!!!  We got back to the hotel Friday evening and had a good evening.  Woke up this morning and all seemed to be good.  She received s good dose of steroids and the rest of her million medications (slight exaggeration), and she was happy.  Dennis left at 8:30 am to fly home so he could be back to work on Monday, plus he has to work Sunday too.  I just figured because of steroids, Hannah and I would be fine and it started that way until about noon.  For lack of a better term and frankly in keeping it real…..all HELL broke loose after lunch.

Out of the blue, quicker than a cheetah and stronger than a mountain lion; Hannah attacked me!  Her pupils were dilated and her eyes were wild.  She started saying phrases like “hurt people, hurt Hannah, pull hair, no good girl!”  She hit, scratched, kicked and tried to bite me.  It caught me so off guard because she is NEVER aggressive nor does she have rage while on steroids.  I immediately looked up to Heaven and my exact words were “dear God, NO!”  I couldn’t believe this was happening and I just started crying while at the same time trying to keep Hannah from hurting me again or herself.  Trust me, that is not easy when she gets like this.

Maybe I should keep all of this to myself and not explain things in detail but I honestly believe that one day there is going to be a mom in my exact position and she is going to need to know that someone has walked this horrific PANDAS journey before her.  She is going to know she isn’t alone and I hope and pray that I can keep this blog going long enough to get to the MIRACLE (that I know with everything in me) the Lord is going to perform.

Our life is not pretty or fun right now and it hasn’t been in nearly 21 months!  We have no peace or joy.  Every.single.day is a struggle that I can’t even put into words.  Physically, mentally, emotionally and spiritually it is a battleground.  But, I truly believe there is a lesson to be learned (probably for me, but I am not a fast learner, obviously) through all of this.  Or perhaps someone’s life is going to be changed or touched and God knows Hannah is the person to do it….frankly, if that person is you just accept God’s gift of salvation already, would ya?  We would appreciate that!  And if there is a blessing to be had…..we are anxiously awaiting that one!

My point is…..I’m trying to understand through the pain!  I am trying to wait patiently on the Lord but in all actuality I am having a hard time “being still” and listening for His voice.  The not knowing why is so difficult to accept.  I think all the time…. “Down Syndrome and a bad heart defect wasn’t enough?”  Keeping it real here people!  I don’t understand and I might never and at times I wonder how long we can do this (again, keeping it real)!  I know we will do whatever we have to do, however long we have to do it…..but, I am just struggling to want to know why and what God’s plan is…..this is just hard!

I will never understand why children have to suffer….but I have faith in the God who created Hannah and the plan that is unfolding.  I have faith that even though I don’t understand that the big picture I can’t see is far greater than anything I can imagine!  I don’t understand no matter how hard I try…..but God does and I will rest in that!

Ready for IVIG

Ready for IVIG

Until next time……..

I Am Enough And So Are You

I am a doubter…..I am one that second guesses every.single.decision I make.  I take FOREVER and a day to make a decision (yes, I am extremely indecisive) and then after I do finally make a decision, I always wonder if it was the right one.  I doubt myself as a wife and mother mostly.

If anyone ever says that marriage and motherhood is easy, they are lying!  They are the two hardest things ever and finding balance between the two….well, how is that even possible?  I know some people seem to have figured it all out; but just between you and me…..this chic hasn’t figured anything out when it comes to both of those subjects.

I am my own worse critic.  I kick myself when I am down and sometimes I will come back and kick myself again just for the heck of it!  I question God a lot!  Why did He choose me for Hannah?  What was He thinking?  Wasn’t there someone else more qualified?  Wasn’t there a woman out there who could have done a better job for Him and for Hannah?  He had to be busy with other things to have made the “mistake” of giving me a special needs child.  Right?  I have asked these questions and MANY more over the years; but not near as much as this past 20 months!  I am so hard on myself.

I want to be “Superwoman” and do it all.  You know, get up in the morning, workout, shower, get dressed, put on the makeup and stylish clothes (of course doing all of that before the little angel wakes up).  Then I want to cook the 5 course breakfast, have the perfect homeschooling day with lots of fun, education and happy smiles!  Then, you must have lunch outdoors with a little shopping and maybe a pedicure.  Then home for an elegant dinner, an evening walk and a movie night with popcorn.  Just to go to bed excited to do it all again the next day…..HA, HA, HA!  The dream…..not a reality, especially for me.  It is more like wake up when Hannah does, spend an hour in the bathroom (Hannah not me).  Give all 3,000 medications (okay, it’s not that many but it feels like it), then a quick breakfast, some housework, a little schoolwork (because let’s face it; getting stabbed in the leg numerous times by my raging child leaves school work undesirable for me).  Then it’s lunchtime and more long bathroom hours.  I finally give in and let Hannah have the iPad so I can do all the things I need to do and yet, when Dennis gets home around 5pm….you guessed it….I am still in my p.j.’s and haven’t had a shower.  Forget the fancy dinner and walking, not to mention working out and movie nights that never happen.  When I finally crash in bed, I dread waking up!  HA!

But, you know what…..I keep trying to tell myself something.  I keep trying to tell myself that I AM ENOUGH.  I don’t have to have a high-class job, or workout everyday, or even get out of my pajamas.  I am enough for what God has asked of me!  He has asked three things of me.  He has asked me to LOVE Him with my whole heart, to praise Him and to serve Him.  Even though He knows I am going to fail miserably every.single.day; He forgives me and helps me, strengthens me and provides His grace and mercy.  He has asked me to love and honor my husband and He has asked me to be the best mom that I know how to be.  He doesn’t expect me to cook 5-course meals or to do all those things I would like to.  He just wants me to love and care for this precious little girl who He created in His image.  I am not required to put a stylish outfit on or makeup or even leave the house.  I am just required to care for and love Hannah.  I am ENOUGH because He has made me enough for Hannah.  He didn’t create me to be “Superwoman.”  He created me for Hannah and her needs.  That “dream” day for me isn’t what is in Hannah’s best interest, but the day I do make for her is.  I am not Superwoman, but I am exactly what God created me to be and THAT IS ENOUGH.

You are enough.  Whether you are a single career woman, a married career woman, a wife, a homemaker, a working mom…..You are enough and God will see to it that He gives you exactly what you need to walk the journey He has you on.  None of our journey’s are the same.  None of our heartaches or joys are the same….we ALL have them but we all have a different path in which we have been asked to walk.  Sometimes embracing our journey is difficult….I know I struggle many times with my journey; but that is when God reaches down and gives me just a little more grace and strength to carry on.

I am enough.  You are enough.  No matter the road you are on……..

My journey……I am enough:

First time at the beach!

First time at the beach!

Hannah and me with Bob the cat

Hannah and me with Bob the cat

Maw-Maw (Dennis sweet grandma), Hannah and me

Maw-Maw (Dennis sweet grandma), Hannah and me

Me and my girl!

Me and my girl!

Part of our

Part of our “sick” journey

Heading in for open-heart surgery #3 in August 2012.

Heading in for open-heart surgery #3 in August 2012.

Nashville, August 2013 right before Hannah got sick.

Nashville, August 2013 right before Hannah got sick.

Me, Henny and Hannah....one day, we will have this again!

Me, Henny and Hannah….one day, we will have this again!

Until next time……..

Perfectly Clear

Okay, this will be a short blog post…..I want to say something and I want this to be perfectly clear…..

My blog post last night was one of brokenness, grief and sadness.  BUT, with that said it was not aimed at ANYONE OR ANYTHING!  I am HAPPY to see others happy and enjoying life.  I don’t begrudge anyone living their lives to the fullest!  We are supposed to do that!  Just because a picture on Facebook triggered my grief and sadness doesn’t mean that I am not happy for others.  I wouldn’t wish this nightmare on anyone, especially my friends or family.

So, with that said…..just because something triggered intense sadness in me doesn’t mean I don’t love to see and hear about other’s lives, joys, happiness and fun times!  Please, never misunderstand my grief over my own journey!  It is my journey and I accept it and would never begrudge anyone enjoying their life!  One day, I will again……please never think I am bitter, resentful or angry at anyone…..I am just sad for me, but happy for others.  I am old enough and I think wise enough now to say that no matter what, I will never hold anyone else’s joys and happiness against them…..if you can, enjoy and live your life to the fullest.  LOVE your children, do things with them, embrace the good because none of us know if and when it will all be gone.

I felt the need to explain myself as I wanted it to be perfectly clear that I hold no ill-will toward anyone.  Please, please, please believe that.  If you believe nothing else…..I am just sad, not bitter!

Until next time……..

That Stinging Burning Pain

Have you ever just been talking to someone or looking at old pictures or perusing around Facebook….just doing something when all of a sudden you feel that stinging, burning pain behind your eyes?  The pain hits your heart and pierces your soul and you try so hard to fight back those tears gathering in your eyes….but you can’t.  The stinging, burning pain is just too much and your tears fall so hard and so fast; so uncontrollably you don’t know if you will ever be able to stop them or if they will ever run out.

Some days, I have admitted many times, that I find myself barely putting one foot in front of the other; not loving or embracing this life.  Some days, I do better and I move as smoothly as I can, taking each bump in the road gracefully and not allowing them to get me down.  Other days, I wake up in fighting mode and tackle each obstacle head-on and refusing to let anything or anyone knock me down.  Each day is different.  Today actually started out okay (which is unusual for a Sunday, because usually my Sunday’s suck).  But, today I was okay until about 5pm then out of the blue it hit me and it hit hard!  The pain in my heart, the life that we are living and the living we are missing out on.  That stinging, burning pain hit the back of my eyes, nose and throat and I had to turn away quickly from Hannah so she didn’t see the tears streaming down my face.  I actually had to leave her and walk out of the room because I just.couldn’t.stop crying…….it hit and I couldn’t control it.  I know what triggered it….it was a picture on Facebook.  Not a bad picture….just of a friend and her husband having a day together…..no kids, no distractions….just enjoying each other and their life.  It hit and it hit hard!  I wouldn’t call it jealousy, because I have said many times before that I wouldn’t wish this life on my worst enemy; but I do LONG for that…..I long for a day to spend with my husband….a weekend away….okay, while we are being honest….a WHOLE ENTIRE WEEK AWAY would be ideal.  Heck, I would settle for a date night!  HA!  I would be lying if I said I didn’t miss mine and Dennis’ life prior to Hannah….we had it good….we had it ALL…..we enjoyed life!  I am thankful for those memories and I long to make more.

Again, please don’t get me wrong…..NOBODY and I repeat NOBODY loves Hannah like I do; well, except the Lord, but this is hard.  Life is hard.  Life is unfair.  Life is sad.  I miss the joy, the fun, the hope, the excitement.  Let’s face it exciting for me is getting out of the house to go to Publix!  Yee-haw!  No, seriously, that is my excitement!

I keep saying that this cannot last forever but in all honesty, I guess it can.  I have lots of friends that I have met going through this journey that are on the same path with PANDAS and their journey’s have gone on for years and years and years; yes, even with IVIG.  So, even though I give myself the “this can’t last forever” pep talk; I guess I could be lying to myself…..I pray not but only God knows.  So, if you ever see me out and about (which would be a very rare occurrence) and I turn away it is because that stinging, burning pain has hit and I might not be able to control the tears that will fall all too quickly after the pain hits!

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Until next time…….