Labels and Just Some Compassion Please

  • SPD (Sensory Processing Disorder)
  • ADD (Attention Deficit Disorder)
  • ADHD (Attention Deficit Hyper-Activity Disorder)
  • PANDAS (Pediatric Neuropsychiatric Disorder Associated with Strep)
  • Trisomy 21 (Down Syndrome)
  • Autism
  • OCD (Obsessive Compulsive Disorder)
  • Anxiety
  • Tics
  • Depression
  • Mood Adjustment Disorder
  • PTSD
  • Complete AV Canal Heart Defect
  • Immune Deficiency
  • Hypothyroidism
  • Epilepsy
  • Adrenal Insufficiency
  • Scoliosis
  • Thermoregulation Issue
  • Hypoglycemia (Low-blood sugar)

All of the above are labels.  Labels to describe an illness, a syndrome, a body or brain dysfunction.  So many of which I still don’t completely understand but ALL of which Hannah has been labeled with during her lifetime and all which still apply.  Two of the above “labels” are very recent and in all honesty have caused me much sadness.  Many of these issues require surgery to “fix” or “repair;” some which might require more surgery somewhere down the line.  Others, are treated with “band aids”  (medications).  Some with diet and some…..well, there is no fixing it, repairing it or really treating it.  Labels…..we love to put labels on things.  “Oh so and so yells out the same repetitive phrases like that because he has Autism” or “Oh she has OCD and she can’t leave the house without checking all the doors and windows to make sure they are locked.”  Labels give us at least some reasoning behind why some people do the things they do; but for those suffering from the “labels” life is so very difficult.

As a parent of a child who has been saddled her whole life with “labels” it gives me an answer for why Hannah does the things she does or says the things she says….almost like at least I have an excuse to give someone on why Hannah behaves or acts a certain way that is “not normal.”  But, can I share my heart here?  May I lay it open briefly for you to see?  I grieve for my daughter every.single.day.  The things she does that she doesn’t even understand because her brain is wired differently than most.  The repetitive speech, the hand flapping, the hair twirling, the head slapping, the hand washing, the “fixing everything perfectly,” the seizures, the emotions…..etc…..things she doesn’t understand and yet her brain controls it all.  I watch and listen to her 24/7 and my heart aches.  Not only because so much of it I don’t understand and I know she doesn’t; but the fact that others don’t understand either.  There is no explaining away her “being so different” and “acting a certain way” to everyone all the time…..some times we just have to let people stare and shake their heads like she really has control over it or we could do something to make it stop.  I am not just talking “behavior” here.  Trust me, we discipline Hannah.  She has never and will never go without consequences for the actions she has control over but there is so much that she doesn’t have control over and as a mom it is so hard to watch her go through so much and then have to endure people staring and wanting reasons on why she “acts or thinks” the way she does.  I only have labels to give…..no explanations and so much I still don’t even understand myself.

Not too long ago on Facebook people were sharing a video of a child having a horrific tantrum.  Now first, why ANY parent would put a child on YouTube or FB of their child acting out is beyond me (I digress).  But, what had me so puzzled and saddened were the people sharing that video and making comments like “if that were my kid I would beat his butt” or “my child would never act like that and get away with it.”  Granted, I understand the “reasoning” behind it and the way most people think…..if you have never dealt with your child doing things like that, you would reason it to say that the child lacks discipline and what you would do if it was your child.  But, oh, let me share something…..until you are the parent of a child who has little to no control and gets sent into sensory overload or has a meltdown due to something out of their control; you have no clue what you will do until you are in that situation!  Who knows what set hat kid in the video off?  Could it have been just a temper tantrum and that he lacks discipline?  Absolutely!  But, could the child have a label?  Autism?  PANDAS?  SPD?  PTSD? Mood Adjustment Disorder?  Anxiety?  The list can go on and on.  Labels……it gives us a reason to explain away certain behaviors and personality issues but for the child and the family living with those labels it is a 24/7, 365 day a year battle; one that is filled with questions, grief and sadness.

I have actually been in a situation with Hannah where all people could do is stare.  I am sure they were thinking….”wow that kid needs an ass whopping!”  Or, “that mom certainly has no control!”  People just stood, stared and didn’t even try to help.  If just one of those people had looked at me through compassionate eyes, instead of judgmental ones I could have “explained” and maybe even received some help.  On the flip side…..I remember one time in St. Pete, alone with Hannah.  We were crossing the street and all of a sudden, Hannah lost her mind and sat down in the middle of an intersection (I don’t know what set her off, except that she was in a PANDAS flare).  She was fighting me and I couldn’t get her up to save my life.  Cars were honking, I was embarrassed and panicked and a guy on his bicycle, threw his bike down, came out into the intersection and asked if he could help.  I said “yes” and he picked Hannah up and carried her across the street for me.  I was in tears and tried to explain Hannah to him.  His word to me were “I understand, until you have lived it, you don’t understand and I have, God bless you.”  I thanked him and he left.  THAT…..is exactly what parents need when you see something happening.  Compassion, kindness and understanding.  It doesn’t mean go to everyone you see having an issue with their kid and ask if you can help; but as human beings could we just show compassion in our eyes, face and attitude instead of that judgmental “how dare their kid act like that” look?

One thing I have learned through this hell of a journey with Hannah is that we all have issues, things, events and struggles in our life that NOBODY knows about.   You don’t walk in my shoes and I don’t walk in yours, but if we would act like kind human beings and just show compassion for others wouldn’t this world be a better place?  I know kids can be unruly, disrespectful, rude, pains-in-the-butt…..but SOME (not all) of those kids have labels…..some of those kids, like my Hannah, cannot help it and some of those parents are living a hell on earth and are doing everything they can to help their child so one day they won’t be a burden to society.  Some of us choose to or have to stay locked up in our homes due to our child’s labels…….maybe some people are glad about that and wish more of us stayed “locked up.”  I know some people are grateful they don’t have to be around Hannah……and personally we are grateful we don’t have to be around people who don’t show compassion.

Am I angry today…..yes….. (is it obvious)?  I promise there are people out there, like me, who miss living life but we are doing EVERYTHING in our power to take care of our children; even though we appear we are failing…..we aren’t!  We are just doing everything we can to survive!  Compassion, kindness, understanding……can’t WE ALL use some of that in our life?

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Until next time…………

 

 

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Tomorrow

I loved the movie Annie when I was little.  Such a great musical and one that I even saw later in life on stage.  There is a song in the movie that Annie sings called Tomorrow.  The lyrics are:

The sun’ll come out
Tomorrow
Bet your bottom dollar
That tomorrow
There’ll be sun!

Just thinkin’ about
Tomorrow
Clears away the cobwebs,
And the sorrow
‘Til there’s none!

When I’m stuck in a day
That’s gray,
And lonely,
I just stick out my chin
And Grin,
And Say,
Oh

The sun’ll come out
Tomorrow
So ya gotta hang on
‘Til tomorrow
Come what may

Tomorrow!
Tomorrow!
I love ya
Tomorrow!

You’re always
A day
A way!

Tomorrow!
Tomorrow!
I love ya
Tomorrow!

I don’t know what made me think of that song last night maybe because it wasn’t a great day…..in fact, it hasn’t been the greatest of weeks due to Hannah’s medical stuff and various diagnosis’.  We have had 2 doctor appointments this week and have testing to do this week and the week of April 11th.   Plus, I am preparing notes and getting things in order for an upcoming appointment in Birmingham with a new Neurologist and frankly I am so over thinking about Hannah’s medical issues.  Many of which either have no cure and/or no treatment that works completely.  This song popped in my head at 11:30 last night as I was heading to bed.  I feel like this could be my theme song in so many ways.  There are often days, sometimes weeks that the days are gray and lonely for me but with God’s grace, mercy and the strength He alone provides, I am able to stick out my chin, grin and say…..tomorrow will be better.  I have learned not to cry.  I have my moments, granted, but overall I shed very few tears anymore.  Some days I feel like I am just going through the motions to get through the day (hoping and praying “tomorrow” is better) and other days I breeze through, getting lots accomplished and actually find myself humming tunes or singing with a smile on my face (so far that has been today).  On those difficult days like Monday and Tuesday were for me, I am thankful that tomorrow always holds the promise of being better.  It may or may not be, but it is a nice thought to go to bed at night and say……the sun will come out tomorrow, so ya gotta hang on till tomorrow, come what may…..tomorrow, tomorrow I love you tomorrow, you are ONLY a day away!

Here’s hoping and praying if you are having a bad day today that your tomorrow is better!

This picture has nothing to do with this post except that one of these next "tomorrow's" we will be reuniting these two and that makes my heart smile!

This picture has nothing to do with this post except that one of these next “tomorrow’s” we will be reuniting these two and that makes my heart smile!

Until next time………

Investing In Lives

There is so much I could write on this subject, not because I am good at it, but actually because I am really bad at it…..always have been.  I haven’t been shy about how selfish I was growing up and even into my 20’s and early 30’s.  Life was all about ME!  The car I drove, the clothes and shoes I wore, my pedicures and manicures, my hair (looking back at pictures though I wonder what I was thinking), the boyfriends (I prefer to refer to them as mostly “Mistakes”).  You get the picture…….selfish, looking out for #1!  Of course, then God sent me a curveball in the form of a baby that relied on me 200%….WHAT WAS HE THINKING?!?  I know what He was thinking…..it was the only way to get my eyes off of myself and focused strictly upon Him; because without Him I guarantee you this journey would have already killed me; maybe not physically but certainly emotionally, mentally and spiritually!

He has taught me to invest in something (someone) other than myself.  Now, if I were being completely honest I wish I could have learned to do this without the roller coaster of the past 10-1/2 years but alas, I have never been one to catch on really quick to things…….so, yes, I have learned to invest in Hannah and ALL of her needs, wants and issues.  But, I am still learning to invest in others; which I think is an even bigger picture to this whole “learning curve” God has me in.  What God is showing me through this is other people in my life investing in ME and my family!

Family…….those who have come alongside of us, even in just the form of a private Facebook message, text, snail mail, gifts for Hannah for no reason, etc.  Those who drop everything to watch Hannah for me at the last-minute and those who have prepared meals…..all done with pure hearts and not asking for anything in return.

Family who isn’t blood…..those people who have come alongside and truly been FAMILY.  From Marty and Cathy (Henny’s Puppy Raisers) to old friends and newer friends that reach out, give you a place to stay, prepare meals and lots of chocolate covered popcorn (Hannah’s favorite), offer you money and send it even when you say “no thank you,” send you on a trip, offer to pay bills, keep Hannah with no strings attached, send gifts to Hannah, get your mail and feed your outside feral cat when you are away due to Hannah getting treatment out-of-town.  The ones that step up to the plate and you know they would give you the shirt of their back if it would help in any way.  They send cards, messages, daily texts and you know beyond a shadow of a doubt that they would drop everything at anytime day or night to help, encourage, or just let you scream, cuss and cry!

Friends……those dear friends who are there no matter what; whether you have talked just a day ago or it has been 20+ years and you pick up right where you left off.  Those friends who you can go weeks and even months without talking to and BOOM when you are together it is like no time has even passed.  I have to add here that I have 3 girlfriends from high school…..we are talking about 30 years ago people (since we all met in the 9th grade) and we have all reconnected and are trying so hard to make it a priority to get together once a month.  We all are in different stages in our lives, with different responsibilities, but we are making it a priority to invest in each other and our friendship!  These are girls who have seen the worst and the best in each other and there is a trust, respect and love that you just don’t find everyday.  I know without a doubt that I can trust these 3 women with anything and the best part is there are no judgments!  We got together last night and we talked about everything and laughed until we all about peed on ourselves!  I am so thankful for friends who love me, accept me and are there for me. We all have our “crap” we deal with but when we get together, it is about nurturing a friendship that God put together when we were in the 9th grade!  What a gift and an investment that will last if we continue to nurture it.  I am learning that friendship takes work.  Yes, the busyness of our lives get in the way sometimes but we have to make time and I am thankful that we are doing that.  I want to do that more with other friends as well…..now if there was just more than 24 hours in a day!  HA!

Strangers……believe it or not we have had complete strangers do things for us; invest in our lives on this journey with Hannah.  People we have never met but felt God lay it on their hearts to reach out and either do something for us or pray for us!  I hear often from people I don’t know who have heard our story from someone else or read my blog and have just reached out to share with me that they are praying for us.

Prayer Warriors…..talk about the ultimate investment in someone’s life…..prayer!  God has taught me so much about prayer the past 10 years…….it truly is the most powerful tool we have!  I have learned how important it is that when you tell someone you are praying for them, that you really do!  I can guarantee you that if I say to you…..”I am praying for you,” I truly am!  There are so many people I pray for daily who have no clue that I pray for them, but I make it a priority to lift people up in prayer.  It is the ONE thing that we all can do if we want to help someone.  I am so thankful for the gift and honor it is to be able to pray for others because I have and continue to be on the receiving end of others praying for us and they truly are the one thing that has gotten us through so much!  When you don’t know what to do and you don’t know what to say……just pray!

Investing in the lives of others is so important and doing it can also help take your mind off your own difficulties or journeys.  Find someone today to invest in…..take them a meal, send flowers, drop a card in the mail, send a text, send a gift card…….say I love you and I am praying for you.  You might just be the person that God will use to help someone at their lowest point…….investing in the lives of others gives you such a blessing in return!

Until next time………

River Of Tears

Have you heard the saying “puddle of tears?”  What about “river of tears;” because that is what we had yesterday.  A river of tears as Hannah got her new back brace to “hopefully” treat her Scoliosis.  I use the word “hopefully” in quotes because that is what the doctor told us yesterday.  There is NO guarantee that using this brace 12 hours a day is even going to work.  The other bad news was that they are going to have to remake the brace.  You see, Hannah has a bone that is protruding from her chest.  It is fairly significant and is the result of having 3 open-heart surgeries and her anatomy, her chest grows out like a “bird chest.”  The brace was supposed to come from under her armpits down to her hips but they were not able to get the brace right at the top so they did a “lower back” brace.  But, unfortunately, it is not going to help the top part of the curve.  Hannah’s scoliosis is an S-shape.  There is a curve at the top and the bottom.  We have to try to correct both or at least keep the curves from becoming more significant than they already are.  So, they sent us home with this first brace but we will go back in three weeks to get the new one.  They are going to have to really work with it and try to get the brace to work on both curves, but at the same time avoid the protruding bone in Hannah’s chest…..you know it is always something…..some glitch with my kid!

Not sure about this......you can see the way her chest protrudes in this picture.  The new brace will have to somehow work around that bone.

Not sure about this……you can see the way her chest protrudes in this picture. The new brace will have to somehow work around that bone.

Hannah did okay, putting the brace on, but when she realized it wasn’t coming off immediately, the tears and anxiety started.  All she kept saying was “brace off now!”  We bribed her with Chick-fil-a for dinner but through her tears all she could say was “off, off, off.”  I promised her when we got home we would take the brace off; trying to get her to stop crying.  I finally caved and said, “when we get to the car after the doctor, we will take it off.”  That helped a little bit but still lots of tears, fear and anxiety.  She doesn’t understand why she has to wear this brace and it breaks my heart because there is no reasoning with her or making her understand.

I got a smile and I was thinking.....okay, this might work but it was after this picture that she realized the brace had to stay on!  Ruh-roh!

I got a smile and I was thinking…..okay, this might work but it was after this picture that she realized the brace had to stay on! Ruh-roh!

When we got home I told her to go put the brace in the playroom.  She did as I instructed, but I think I should have been more specific on where in the playroom to put it as she placed it in the trash can.  I laughed but at the same time realized that this was truly going to be a struggle.  I put the brace on the chair in the playroom and went back later and it was back in the trash can.  Oh boy!

Where Hannah thought the brace belonged!

Where Hannah thought the brace belonged!

So, this new journey is definitely going to have its own challenges and the bottom line is it may or may not even work.  So, all the tears, struggles and challenges ahead of us might be for nothing.  She still might have to have surgery down the road.  The thought of putting steel rods and screws in her back is just something I cannot wrap my head around and so I am choosing not to focus on that right now.  We are going to take each day at a time and do the best we can…..that is all we can do…..the best we can through the river of tears, anxiety and fears all we can do is try.

Until next time……..

Fear Didn’t Win and Something Happened

I don’t even know where to begin…..I guess at the beginning, right?  Hold on folks, this will be a long post!  HA!

Back in January I received a call from a man by the name of Tim from Crossview Church here in Jacksonville.  He shared with me that a friend of mine had shared our story with him and Hannah’s love for the Gaither Vocal Band.  If you aren’t familiar with the Gaithers they are Southern Gospel writers and singers.  Bill and Gloria Gaither have written so many of the songs that I grew up singing like He Touched Me, Because He Lives, Family of God, It’s A Miracle, I Am A Promise and half the hymns in a Baptist hymnal!  HA!  Anyway, Dennis has always been a huge fan of the Gaithers and the Gaither Vocal Band and of course has raised Hannah listening to them all.the.time!  Now, I have gone on record many times saying I am not a huge fan of Southern Gospel music, mainly because it is usually a slower tempo and there is just something about singing Jesus name with a twang to it that makes my skin crawl…..just keeping real people!  Anyway, I am referring mainly to those old quartets and old-time southern gospel.  The Gaither Vocal Band is truly amazing…..they have had many people sing in the band…..David Phelps (probably has the best voice of any Christian artist out there), Michael English (one of my all-time favorite gospel artists), Mark Lowry (who is absolutely hysterical and sings beautifully), Adam Crabb (who can sing like an angel and is “eye candy” too, ha), and so many  more!  So, just for the record…..for me to say I am not a fan of Southern Gospel music doesn’t mean I don’t like the Gaither Vocal band because I do…….especailly after today!  So, back to my story.  Tim, the Minister of Music at Crossview asked Dennis and me to come to their church as they had a presentation to make to us.  I got a babysitter for Hannah one Sunday and Dennis and I went.  At the end of the service (probably one of the sweetest group of people I have ever met and a wonderful preacher), they called us to the stage and told us that they had reached out to Bill Gaither and not only did they present us with 3 tickets to the Gaither Vocal Band concert tonight but also a backstage meet and greet with Bill Gaither himself!  We were so excited, mostly for Hannah, but I could tell Dennis was beside himself with anticipation.

Now, that four-letter word…..F.E.A.R creeped within me.  Fear of germs, fear of crowds, fear of possible meltdowns, fear of the unknown, fear of potty issues, fear of seizures, fear of…..well you get the picture.  Our biggest concern for Hannah is germs.  Hannah, due to PANDAS, can never have another flu shot or any vaccination for that matter and this has been and continues to be one of the worst flu seasons we have ever had; so that fear started creeping in weeks ago.  Do I dare take her around possibly 2,000 people?  I have kept her in a protective bubble for so long because of germs and what infections do to her brain how could I possibly take her out?  But, how could I not?  You see, Hannah has had little to no joy the past 2-1/2 years since she got sick.  We only leave the house to go to the doctor or to swing by Chick-fil-a’s drive thru.  That is it!  No playdates, no Disney, no movies, no friends, no church, no school, no…..NOTHING!  How could I possibly keep her from seeing her favorite band live?  I couldn’t……

So, today, we went to see the Gaither Vocal Band in concert.  We told Hannah 2 days ago and WOW, it is all she has talked about.  She told us in the car the whole way there today “Hannah is so excited!”  The joy on her face was infectious!  We got there and we were greeted by Tim and his wife and we waited to go back and meet Mr. Gaither!  When we walked in to the room Bill Gaither was in, Hannah looked at him and said “Mr. Gayfer (Gaither) I love you, sing He Touched Me please.”  Mr. Gaither was so sweet.  He asked Hannah her name and promised to sing He Touched Me just for her.

Yes!  Before you say anything, Dennis gave me permission to post this picture....for those of you who don't know Dennis didn't want his picture posted on my blog....today he made an exception!  Mr. Bill Gaither with us!

Yes! Before you say anything, Dennis gave me permission to post this picture….for those of you who don’t know Dennis didn’t want his picture posted on my blog….today he made an exception! This is my sweet family with Mr. Bill Gaither!

The concert was amazing!  The talent these guys have is beyond words……I am not a singer! Heck, I cannot carry a tune in a bucket but the men in this group have the most beautiful, strong, incredible voices!

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During intermission, I was able to see some sweet friends I had not seen in a long time.  It was so nice to chat and fellowship with people who I love and admire.  After intermission Hannah kept saying, “sing He Touched Me.”  HA!  I have to say watching Hannah watch the concert kept me in tears!  The smile on her face said it all.  She kept giving thumbs up and saying “Fantastic singing, great job!”  The smile never left her face especially at the end of the concert. Bill Gaither said, “where is my friend Hannah?”  Dennis stood Hannah up on his lap and Bill Gaither said, “There she is…..I promised sweet Hannah that we would sing her favorite song, He Touched Me…..Hannah this is for you baby.”  As they sang, I cried.  I cried because the words to the song are so powerful and hearing them sing it was even more powerful.  But I also cried because it is Hannah’s favorites song and they sang it for her!  They sang it to her!  That, to me, was the most amazing thing this group could have ever done!  They took a song with such a powerful meaning and specifically sang it to MY Hannah!  I literally sobbed!  I sat there as they sang and listened to Hannah singing with them and I thought……”this was so worth it!”  Talk about priceless, it was!

Shackled by a heavy burden
‘Neath a load of guilt and shame
Then the hand of Jesus touched me
And now I am no longer the same.

He touched me, oh He touched me
And oh the joy that floods my soul
Something happened and now I know
He touched me and made me whole.

Since I’ve met the blessed Savior
Since He’s cleansed and made me whole
I will never cease to praise Him
I’ll shout it while eternity rolls.

He touched me, oh He touched me
And oh the joy that floods my soul
Something happened and now I know
He touched me and made me whole.

At the end Hannah said, “more singing, no go home!”  HA!  She was sad that they didn’t sing “He’s Alive,” but other than that her day was made!  As we were leaving we saw Adam Crabb standing there and when he saw Hannah he bent down and shook her hand.  I started crying like a baby again and as he hugged me and wiped my tears away (yes he did that….his hand on my face…..I think I cried even more, HA!), I thanked him for making my daughter so happy!  I told him that this was our first outing as a family in over 2 years and that this was the most special day for our family in a very long time…..he hugged me again and I didn’t mind!  HA!

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Yes, I was clinging to him! LOL! Can you blame me?????

Today was magical.  It wasn’t an amusement park, a ballgame or a NASCAR Race.  It was a Southern Gospel concert and it brought more joy and light to the three of us than you could ever imagine……all because a friend told a friend who happened to have a connection to make all of this happen.  Today, right now as I type this, I am so incredibly grateful that fear didn’t win today and we stepped out on faith believing that God is going to keep Hannah well and today will be the first step in having more fun outings together in the future…..today fear didn’t win and something good happened!

Until next time…….

Better Research Than The FBI

I think when my “career” of constant caregiving is over I should go work for the FBI.  Yes, I am praying that the day will come where I can just be a wife and mom removing the title of “Caregiver” from my job duties.  Yes, all mom’s are “caregivers” but the word I am using encompasses that of 24/7 constant, no break, care of a medically fragile child.  I do pray that one day I can shout from the rooftops that Hannah is healed and this dreaded PANDAS, seizures, heart issues, scoliosis diagnosis’ are things of the past and we are living life instead of merely existing.  Until then I do the ONLY thing I know to do (my coping mechanism)…..I research, read, study, google, talk to others who have walked these specific journey’s looking and of course always praying for a cure.  I have to say I probably do better research than the FBI when it comes to Hannah’s aliments and medical issues.  With that said, I ONLY use trusted websites like Mayo Clinic and various Children’s Hospital’s websites and doctors who specialize in our various issues.  I don’t want anyone to think I believe everything I read on the internet, because I do not!  Then, I always take the information I learn either from reading books, online research, or talking with others moms and/or professionals to Dr. Kim, our Pediatrician.  I truly have a plethora of information on PANDAS, seizures, fevers, Down Syndrome, Heart defects, scoliosis, etc. (not to mention the research of essential oils, diets, dietary supplements, vitamins and even all those multi-level marketing things out there with all of their shakes, veggie powders, energy drinks and on and on and on).  I have researched them all the past 3 years.  We actually do use a product called Isagenix for Hannah and that decision was made after many hours of research on all kinds of various products.  I don’t do it to make money though….just looking for anything and everything I can get my hands on to try to help Hannah physically, mentally and emotionally!  One thing I have learned the past 3 years is we are all unique and something that might work for you or your family, doesn’t work for us.  There is a lot of trying and testing different things to find the right thing for you.  We have even had to do that with prescription medications.  Some of the medications used to treat some of Hannah’s issues, she has had adverse reactions to and then some things that work for her, have caused bad reactions in others; so it is all about finding balance for you and your family.  There is no one-size-fits-all when it comes to medical issues or anything for that matter.

I have had the opportunity this week to speak to several people who have helped me and pointed me in some different directions for us to try with Hannah.  One of the ladies I spoke to yesterday wrote a book entitled “Joshua’s Missing Peace” about her son with PANDAS.  She was very sweet and willing to talk to me on the phone yesterday for almost an hour and gave me some new information and things to ask our doctor to check for us.  We have an appointment coming up very soon in Birmingham with a new Pediatric Neurologist who is actually researching PANDAS and is willing to see us.  I am also looking into taking Hannah to a Chiropractor (Functional Neurologist).  This is something I have been debating on for a long time and now I feel (thanks to 2 friends this week pointing me in the right direction), it might be time that we try it.

I spend many hours each week just researching and looking at all the options for Hannah.  I pray over them and weigh the pros and cons to each; including the financial ramifications.  So many of the things we could try, insurance won’t cover; so there have been some things we have not been financially able to do.  The main thing was to see one of the leading PANDAS Specialist in America  (who was happy to see us) but at the tune of $1200 just for the consultation; we just couldn’t justify it.  Thank the Lord for a Pediatrician who has and continues to work with us and do anything in her power to see that we get what we need done.  There are things that are gimmicks out there that I steer clear from and then others that I do try.  I just “go with my gut” for the most part.  Some things we have tried, and they haven’t worked.  Other things we have tried and they have worked; even just temporarily.  But, in all actuality, I will take a temporary reprieve over none at all any day.

Hannah is beginning to flare again.  I think it is due to the horrific pollen issue we have going on in Florida right now.  It snows “yellow” here!  My allergies are giving me a fit too.  I pray that this flare is short-lived and not as bad as some of the other flares have been.  I am her target (which is very common with other PANDAS kids).  They pick one person (their safe place) to attack and in our home that is me.  I guess I should feel honored that she considers me her “safe place” but I am not honored in the slightest! HA!  The worst part of any attack is if I get out-of-the-way, she turns on herself and I am not going to standby and watch Hannah hurt herself repeatedly.  Each time gets more difficult to watch and my heart shatters a little bit more with every attack or rage episode.  I told my new friend Lori yesterday that I think I wake up and grieve every morning before I even get out of bed.  Then, my feet hit the floor and I tackle the day, sometimes in zombie mode but it is almost like “okay, I have grieved now pull up my big girl pants and get through the day.”  At least that is how I look at it.

I guess I should re-read what I have just typed because I feel  like it is all over the place…..I am having trouble lately putting my thoughts into words.  I think it is because I have so much built up in me that I want to say but feel sometimes things are best left unsaid…..especially when I am this sad.  So, I have spent a lot of time this week, since Hannah’s flare started last Friday researching and talking to people who have been there.  This week I could easily be a huge asset to the FBI, if I was researching crime instead of medical issues!  HA!

Between our move, Hannah’s medical conditions (this flare and the fact that she gets her back brace on Tuesday for Scoliosis), the political upheaval America is in (how is it that our BEST 2 choices are that of Hillary and Donald) and so many friends and family members struggling with sickness, death, surgeries and cancer…..well, I think we could all use a vacation!  Since that isn’t going to happen anytime soon…..I cope by researching!  Maybe one day through all my research, I will help our doctors find how to help Hannah and the many children affected by this debilitating disease!

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Until next time………

Settling In

This week has been an exciting one for us.  We closed on our old house Wednesday and have been settling into the new one.  I have pretty much unpacked most of the boxes (except for the ones stacked in the garage that I need to go through first), as those were all in the attic at the old house.  They might sit out there awhile!  HA!

Fortunately, we had possession of the new house beginning in January so we were able to do a lot prior to moving in.  We replaced most of the flooring with new carpet and hardwood and painted most of the walls.  We wanted it all new and clean prior to moving in and I spent MANY nights over here after Dennis got home from work cleaning, scrubbing, putting in new shelf paper and moving boxes over slowly.  I had even unpacked the kitchen, Hannah’s playroom and many other things prior to the day of the big move.  So, that truly helped in getting us settled quicker.  Don’t get me wrong, we still have a ton of things to do.  We have just now decided to go ahead and replace the dining room floor and back hallway as well (using the same wood we did the living room with) and I want the kitchen painted as it is an awful yellow color (sorry mom).  Truth be known, mom and I have complete opposite taste in everything!  She is country (hence the style of the house).  I am more traditional/rustic with a touch of contemporary (I know, very unusual combination there).  So, even though I cannot change the outside appearance of the house, the inside will slowly be changed, except the kitchen cabinets because let’s be honest, that alone would cost us about $20,000 and that is not in the budget.  The appliances, flooring, light fixtures and paint are going to be changed really soon though.  So, there is so much still to do, but we have time and will do it room by room once we save the money to get it done.  We are happy to be in though and it has really given us so much space to spread out; which we needed.  My favorite room of the house is the laundry room.  For the past 14-1/2 years I have done laundry in the garage with the heat, cold, bugs and SNAKES!  Yes, there were several occasions where I encountered my worst fear (snakes) while minding my own business and attempting to do laundry.  I dreaded laundry due to having to go in the garage to do it.  So, I am in Heaven in my new laundry room which has a brand new washer and dryer (thanks mom) and a sink, huge closet and shelving…..no more going into the garage and fighting the elements/critters to get laundry done!  YAHOO!  It is the little things in life that make me happy!

Living Room before (ignore ugly curtains).

Living Room before (ignore ugly curtains).

 

Living room with carpet ripped out and curtains removed.

Living Room with carpet ripped out and curtains removed.

 

After flooring was put down.

Living Room after flooring was put down.

Hannah is so happy in her new house and tells me all the time that she loves her new playroom, new bedroom, new bathroom and new kitchen! HA!  She also is loving being outside.  That is huge for us.  For over 2 years I would ask her every single day if she wanted to go outside and her answer was always, “no, not yet.”  Since we have lived here, we have gone outside everyday and taken walks and she is asking to go!  She is doing really well as I was really nervous about her anxiety and adjustment to the new house, but she had none……she is happier right now than I have seen her in a very long time!  That makes my heart smile!

Our first walk

Our first walk

 

Look! We are outside!

Look! We are outside!

Dennis is loving it too and even took Friday off work so he could work in the yard, wash windows and many other things.  We also have met a lot of our new neighbors.  Some of the them I already knew but others I didn’t, so that has been nice and they are all super sweet people!  The other wonderful thing about our location is I am only about 15 minutes from my brother and sister-in-law now, where we were a good 35-40 minutes so that makes me super happy!  I went over to their house Friday night to see my niece who was home from college.  It was so nice getting in the car to leave and it only taking 15 minutes to drive home.  Dennis even said the drive to work each morning is shorter with less traffic!  All-in-all this has been a true blessing for us.  God’s hand was all over this from the time my parents decided to downsize until we signed the paperwork Wednesday selling our old home.  This truly is where we are supposed to be…….glad to be HOME!

Mimi left us her piano and everyday Hannah and I sit down and she sings while I play. We have mastered "He Touched Me" by the Gaithers!

Mimi left us her piano and everyday Hannah and I sit down and she sings while I play. We have mastered “He Touched Me” by the Gaithers!

Until next time………