Unfulfilled Dreams

Are there dreams and goals that you had all of your life that you either never pursued or they just never became reality?  There are several for me……

Christmas Day after my parents and husband left my brother’s house to go to the Christmas Eve service at church my brother, sister-in-law, niece and I sat around their dining room table talking about the things that young people have today that we didn’t have years ago.  The things that are readily available to kids now weren’t for us growing up.  My parents were not rolling in money, heck….we lived very frugally and money was tight.  Many of my dreams weren’t fulfilled either due to money issues or the fear of failure on my part.  Talking with them on Christmas Day it really hit me that NONE of the things I wanted to be or do growing up have come to fruition.  It made me kind-of sad.  Don’t get me wrong….I know I am where I am supposed to be and this is the life that God chose for me (after making many choices myself along the way), but the truth is…..it wasn’t what I had planned.

After thinking about it more I realize some of those dreams and the chances of them becoming reality have come and gone.  Can you imagine me enrolling in the police academy now and trying to keep up with the 20-year olds!  HA!  That would be a joke!  Can you imagine me being a therapist when in all reality, I am probably the one that needs the therapy?!  Some of my dreams would take furthering my education and trust me….that ship has sailed!  This chic ain’t going back to school…..I would have to go back and take 3rd grade math to even think about passing college classes!  HA!  The fact is, some of the things I dreamed of way-back-then just can’t happen.

BUT……there are 2 dreams that can happen and I have decided that the only way to fulfill those dreams is to try.  I might fail…..I might fall flat on my face……I might be really bad at it, but I won’t know until I try.  So, 2015 is going to be the year that I take a HUGE leap of faith and focus on fulfilling 2 dreams.  One dream of which I won’t discuss until it is completed because if I am going to fail at it, at least only Dennis and I will know about it and the other dream I will discuss as soon as I can.  Both of these dreams can not only help me have the fulfillment I so desperately want but also help Dennis, Hannah and I financially for the future.  So, here I am taking a gigantic leap of faith into the unknown relying on sheer will and determination and of course, the Lord!  Fact is, without Him I would fail before I even get started!

2014 has been an EXTREMELY DIFFICULT year for us.  I haven’t lied about that.  In fact, it has probably been more difficult than I have let on at times.  2014 tested our faith, our marriage, our sanity….frankly, every aspect of our life!  We are praying 2015 is better…..full of success, joy, betterment, love, PEACE and fulfilled dreams!

My prayer is for all of us who experienced a hellish 2014; that in 2015 we will all have a more Heavenly experience and if that means the Lord is going to come back for us all….that would be fine by me!

Happy New Year to you all……here is to taking unfulfilled dreams and making them a reality!  2015, I am coming for you ready or not!

My motto for 2015

My motto for 2015

Until next time……..

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I Love……

Hannah is a different child right now, in a VERY good and refreshing way!  Thanks to this new medication, we are seeing sides of her we haven’t seen since before March and it is such a relief for us at this time.  We were desperate for a “break” and a little peace from the horrific reality we were all 3 living.  Again, we know this peaceful period of time could be temporary, as this medication could stop being effective and she could regress again, but for now I am just enjoying every moment and being grateful for this time.

Hannah is “in love” with SO much right now.  She is verbalizing her love of people and things and so I thought I would share the things that she loves at this moment.  These are the things I hear all day long and in no certain order except the first few as those are the ones I  hear constantly:

  • I love Katy Perry
  • I love Carrie Underwood (she sings Jesus Take The Wheel constantly)
  • I love Jesus (sorry Lord,  you came in after Katy and Carrie)  oops!
  • I love Mommy
  • I love Dennis (yes, she still calls her daddy by his first name)
  • I love Dr. Kim (she thinks Kim is family)
  • I love iPad
  • I love singing
  • I love music
  • I love Christmas trees (she says this every time she walks by ours)
  • I love fruit (as she inhales the fruit salad her Maga Blankinchip made)
  • I love hospitals (yes, she really does….that is so sad to me)
  • I love dollhouses (she doesn’t have one so I think this is a hint)
  • I love babies (sorry Hannah….mama was fixed a long time ago and I am in Menopause, yay me!)
  • I love juice….apple, prune and pear
  • I love milk
  • I love yogurt
  • I love oatmeal
  • I love cookie balls
  • I love books
  • I love color (coloring)
  • I love school work
  • I love math
  • I love Ms. Coppedge (her teacher at her old school)
  • I love trees
  • I love cats
  • I love dogs
  • I love Henny
  • I love Marty and Caply (Marty and Cathy, Henny’s Puppy Raisers)
  • I love Boo
  • I love Mike
  • I love Boo/Mike house
  • I love Melanie
  • I love Mank (Frank, Melanie’s husband)
  • I love Cut-Cut (our hairdresser)
  • I love Unc
  • I love RaRa
  • I love May-May and Ha-Ha Hunter
  • I love Mimi
  • I love Boompa
  • I love Maga
  • I love Papa
  • I love Le-Le
  • I love Ben
  • I love Do-Do
  • I love Ed
  • I love hotels
  • I love puter (computer)
  • I love happy (being happy)
  • I love EVERYONE
  • I love you people

I could seriously go on and one but you get the drift…..she LOVES everything and that makes this mama really happy right now.  For so long nothing made her happy and nothing and no one could make her smile and now because of this new medication that has changed….she is happy, loving, communicative and funny!  Thank you Lord for this break and peace from the hell we were living!  I pray it continues.

Hope everyone had a Merry Christmas…..I got what I wanted…..a happy little girl!

My sweet, silly girl!

My sweet, silly girl!

Until next time……..

 

What Katy Perry Does Best & Brief Update On Hannah

Okay, first let me say….I think Katy Perry has a beautiful voice, she can dance, she is gorgeous and what I wouldn’t give to have a body like hers but even though I don’t possess those things, those are not the things I am referring to that she does best.  What I am referring to is that she can make my little girl smile when no one else can.  Through this whole ordeal this past year and a half with Hannah, the very few smiles we did see was when Hannah was listening to music!  Yes, Hannah has a love for ALL music.  Everything from Southern Gospel to Christian to Country to Rock/Pop.  But, Katy Perry, by far is her favorite!  Hannah wasn’t talking much or interacting with us much until we began this new treatment.  Now, we cannot shut her up (I am not complaining here although my ears do hurt by the time she goes to bed at night, HA)!  These are a few of the things she has said this past week to me that makes me know that Katy Perry is the BOMB:

1)  “Mama, I love Katy Perry.”

2)  “Hannah eat dinner with Katy Perry.”

3)  “Katy Perry come here Hannah’s house play”

4)  “It’s no big deal”  Just listen to the song by Katy Perry called This Is How We Do It and you will understand

5)  “Katy Perry Roar Hospital”  There is a video made by CHAD (A Children’s Hospital) that lip-syncs to Roar and Hannah loves that video and seriously wants to watch it all.the.time.

6)  “Hannah go Katy Perry’s house”

7)  “Katy Perry beautiful”  yes, Hannah and your daddy thinks so too!  HA!

8)  “Katy Perry come here NOW!”

9)  “Hannah sing with Katy Perry” Seriously, this child talks non-stop about Katy Perry.

No wonder her music was such a calming thing prior to this new treatment.  So, for that I say thank you to Katy Perry.  I didn’t realize it until Hannah started talking again and verbalizing it constantly.  In all honesty, Hannah was really  non-communicative from March until just a few weeks ago.  I didn’t realize just how much until this new treatment started working and bringing her back from what I refer to as hell.  It is amazing this little girl that I have today and the difference from just a few weeks ago.

I have had people ask me though if that means we will be able to get out and do more things.  So, let me address that for a minute.  The answer is no.  At this time, the worst thing that could happen to Hannah is to get sick.  Any infection will go straight to her brain and cause the inflammation to worsen thus sending her into another flare.  This new treatment is just that…..TREATMENT!  Not a cure……there is no known cure.  I know that IVIG could truly help her and possibly it could be the cure for her, but at this time there is no way insurance is going to pay for it and our hands are tied.  Even Katy Perry would have trouble affording it!  So, with that said, we HAVE to keep Hannah well!  That is and has always been my #1 goal and it continues to be.  It is imperative right now that she stays that way!  So, as far as school, church, eating out, playdates, etc…..they still cannot happen; especially during flu season!  We want to keep this little girl that we have and any sickness could steal her from us again.  Please understand that and know we are not being rude or avoiding anyone and continue to pray for us.  Please pray that this medication will continue to work and that we won’t regress back to where we were prior to this new treatment.  My prayer is that this will turn into a complete healing for Hannah and that one day soon this terrible disease will be gone.  That, my friends would be a MIRACLE that only God could do and I am believing that in His timing it will happen. This will probably be my last post before Christmas so let me wish each of you a very Merry Christmas filled with love, joy, happiness and peace that only God can give!

From last Christmas!  Santa visited Hannah and Henny at our home!

From last Christmas! Santa visited Hannah and Henny at our home!

Happy Birthday Jesus!

Happy Birthday Jesus!

Until next time……..

Christmas Miracle

SO much has happened since my last post and I am dancing for joy right now.  Where to begin…..

My lifelong, dear friend….no she is more like a sister than anything, got married!  I was so fortunate enough to be able to travel to Atlanta to attend her wedding.  My friend Tammy and I were joined at the hips growing up.  Her parents helped raise me and my parents helped raise her.  If anyone knows me inside out, she does!  So, missing her wedding was not an option for  me.  Our problem was Hannah…..there was NO way she could make the trip the way things were going and there was no way that she could attend a wedding as she cannot be around that many people with all the sickness and germs floating around.  So, the original plan was for me to fly up to Atlanta on Friday and back on Sunday.  Dennis and Hannah were just going to stay at home.  Dennis had the whole next week off and we wanted to take a vacation but staying in a hotel for a week is not an option due to germs and money (for the record I am a hotel snob and will only stay in NICE places….no Motel 6’s for this chic).  We wanted to spend a few days in Atlanta with Tammy and her family and then head on over to Birmingham for 5-6 days but we just knew we couldn’t do that with Hannah.  So, the plan was for me to go, come home and have a staycation here in Jacksonville….BLAH!  Well, about a week or so before I was to leave Hannah started a new treatment protocol with steroids and a new antibiotic to treat PANDAS.  The first 2 days of the new treatment was a NIGHTMARE….she raged 24/7, was sad and her anxiety was through the roof!  But, on day 3 something miraculous begin to happen…..she was calm, happy and we were seeing positive changes.  We were amazed!  So, then we decided to ALL go to Atlanta.  The great thing about Atlanta is that Tammy’s sister Michelle and her husband Mike have room for us and always extend to us a place to stay.  Long story short…..we drove to Atlanta on Friday, December 5th and stayed until Saturday, December 13th.  We had the best time!  Hannah was happy, loving……joyful in fact!  We were astonished!  I was able to attend Tammy’s wedding and Dennis and Hannah just hung out at Mike and Boo’s (Michelle’s nickname) house.  Let me brag on my husband a second here…..he was amazing!  He did everything with Hannah the entire week giving me a much-needed break!  He played with her, bathed her, put her to bed, and rode the golf cart with her (Hannah’s favorite thing because he lets her drive).  I was able to visit with my 2nd family, shop, attend a beautiful wedding, shop, laugh, shop….did I mention shopping?  HA!  It was amazing!  It was a relaxing, refreshing and glorious trip!  What a blessing to have a week like that after the past year and a half we have had!  On top of everything Boo got some great pictures of us…..Hannah smiled like she hasn’t smiled in MONTHS.  Here are some pictures from our trip:

One of my favorite pictures from the wedding!  Love you "T"

One of my favorite pictures from the wedding! Love you “T”

Me, our friend Wendy and Boo!  Love these ladies!

Me, our friend Wendy and Boo! Love these ladies!

Hannah driving the golf cart around the golf course where Mike and Boo live!  The child will NEVER get a license....she is a maniac driver!  HA!

Hannah driving the golf cart around the golf course where Mike and Boo live! The child will NEVER get a license….she is a maniac driver!  We were all holding on for dear life!  HA!

Boo and Hannah!  These 2 love each other so much!

Boo and Hannah! These 2 love each other so much!

My silly girl!

My silly girl!

OH THIS FACE!!  HAPPY, HAPPY, HAPPY!  Thank you Lord!

OH THIS FACE!! HAPPY, HAPPY, HAPPY! Thank you Lord!

We even got to see dear friends while we were there.  Barry and Nancy are so dear to my heart.  We knew them from our church in Jacksonville and they now live in North Georgia and came to Mike and Boo’s house to visit us since we couldn’t take Hannah out to a restaurant.  It was such a nice visit with them!  I actually cried when I saw Barry as he was always my buddy at church for years!  Nancy is one of my faithful blog readers and has been so sweet, generous and loving to me!  I would put a picture on here of all of us but you know how Dennis feels about his picture on my blog!

So…..now here is the update on Hannah and her treatment plan.  We got home on Saturday and the new medications ended on Sunday.  It was a 21-day trial period.  I wasn’t sure what the next step was going to be.  I texted her Pediatrician on Sunday and she said that we needed to talk with our PANDAS Specialist as this is “uncharted waters” and we needed her direction.  Keep in mind, I was out of medication and if we were going to get to stay on it, I didn’t want Hannah to miss a dose.  Our Pediatrician told me that she would email the PANDAS Specialist on Monday and I told her I would call.  I wasn’t sure if either of us would hear back yesterday but we both did!  I was able to talk to Dr. T. and she emailed Dr. K. and together they came up with this new treatment protocol and I was able to pick it up last night before Hannah went to bed so she didn’t miss a dose!  That, dear readers, was GOD!

We don’t know what the future holds for Hannah.  We don’t know how long this medication will work.  We know it isn’t a cure; just a treatment but let me tell you this…..God has heard our prayers and He has answered them with this and I am so very thankful!  Hannah’s immune system is still not good and we have to be careful how she is exposed but with this medication our little girl plays again in her room for hours on end.  She is happy; I hear laughter and singing out of the blue for no reason.  She is sweet, kind and loving….no anger, no aggression and the most important….NO RAGE!  Her anxiety is much lower and no tics!  Her OCD behaviors are still going strong but you know what…..I can deal with that!  Heck, I have many OCD tendencies myself!  So, right now our home is peaceful for the first time in MONTHS and I am thanking the Lord for this Christmas Miracle!

I would ask that you pray with us….pray that this medication will continue to be effective with no bad side effects.  On this medication Hannah will need lab work and EKG’s done every 6 weeks as it can cause heart issues.  Our doctors are on top of it and know what to look for.  That is the downside of this treatment protocol but you have to weigh the pros and cons and right now the pros outweigh the cons.  If this mediation does create more heart issues (which Hannah definitely is at risk for and doesn’t need) then we will have to make changes.  So, our prayer is that God will protect her heart and she will have no added problems.

Sorry for the long update but I had so much to say….here are a few more “HAPPY” pictures for you to enjoy!  Merry Christmas my sweet blog readers!  I am thankful for each of you!

Love the sweet look in her face!

Love the sweet look in her face!

On the golf course.....

On the golf course…..

There are no words to express how much I love this little girl!  Thank you Lord for allowing me to be her mom!

There are no words to express how much I love this little girl! Thank you Lord for allowing me to be her mom!

Until next time……..

 

Living and Learning

Well, I did it again….I had a long conversation with myself yesterday.  It was more of a reflection over the past 9 years but I did come to some pretty big revelations.  Do you want to hear them?  If so, keep reading….if not, I can’t blame you as I can be long-winded at times!  HA!

I was a wimp of sorts when Dennis met me 14 years ago.  I was scarred….I had been through a battle prior to meeting him.  A long nearly 3 year battle.  I won’t go into the details but when Dennis met me I had massive baggage.  Major trust issues and I was wounded.  Wounded by a failed marriage, wounded by people who judged me without knowing the facts and wounded by the loss and hurt that I had experienced in my 20’s and especially through a difficult first marriage.  So, when Dennis met me I was timid and scared.  I was damaged and thought no one could ever love me.  Well, he did……he took this scared, damaged and wounded woman and showed me what love was.  He built me up constantly and never once tore me down (still does).  He showed me what a man was….a gentleman.  He showed me unconditional love, devotion and sacrifice!

Fast-forward to 9 years ago when Hannah was born……once again, I was scared.  How could this happen?  A child with Down Syndrome and major heart defects……how could I do this?  I remember crying horribly at week 17 of our pregnancy when we found out all we were dealing with.  I remember asking Dennis, “how do we do this?”  His response, “we just do…..we pray and we trust that God will give us the strength and grace to do what is best for her.  We just do it!”  I have always loved his optimism!

I have learned a lot over the past 9 years.  I have grown a lot too.  I have toughened up….I have learned to fight for the things worth fighting for.  I found my voice and I am not afraid to use it.  I have learned to care about the things that are really important and not to care about the things that truly don’t matter.  I have learned not to judge and to not pay attention to those that do.  I have learned not to follow others but instead to form my own path and follow my heart.  I have learned to not let anyone walk all over me….I am no one’s doormat.  I have learned to love myself (this is something I never did) and that is one of the most important lessons anyone could ever learn.  I have learned to NEVER GIVE UP; you always fight for what is important and don’t take no for an answer especially when dealing with your child; their health, well-being and happiness.

I have lived a life and made choices that I wouldn’t recommend to others much younger than me.  But, through each one of those choices and yes, sometimes very bad decisions I have learned.  But, nothing and no one has taught me more than Hannah.  These past 9 years, although extremely difficult at times has made me the person I am today.  For that, I am extremely grateful!  You see, through my reflection yesterday (and yes, a little talking to myself), I realized once again just why God gave Hannah to me……it was to get me to this place I am today.  The place where I finally forgive myself for all the past mistakes, love myself in spite of them and have a spirit of fight in me that I need to move forward! Yes, in many ways, my daily existence is a fight…..a fight to help my little girl come back from this nightmare she is living and to get her back whole! Had it not been for all I have been through, I am not sure I would have the fight, determination and motivation to keep going.  So, yes…..I have lived and learned and today I am better for it.

A few years ago when we had Bob the cat (for a matter of weeks).  One of my happiest times.

A few years ago when we had Bob the cat (for a matter of weeks). One of my happiest times.

Me and my girl....my reason for living!

Me and my girl….my reason for living!  This picture was taken just moments before her 3rd open-heart surgery.

Oh sweet Hannah.....the things you have taught me and the joy you have brought your daddy and me.  We will fight until we get you back.....

Oh sweet Hannah…..the things you have taught me and the joy you have brought your daddy and me. We will fight until we get you back…..

Until next time………