I Miss The Little Girl Who……

I miss the little girl who I gave birth to.  I miss the little girl who was always happy, full of energy, ready to give away hugs and kisses at a moment’s notice.  I miss the little girl who never cried, never screamed and had no clue what a temper-tantrum was or how to throw it.  I miss the little girl with eyes so bright that they could light up the darkest night and a smile so big that it engulfed you and you couldn’t help but smile back no matter how bad your day was.  I miss the little girl who didn’t know constant pain and even when she was sick could handle it like a pro; with a smile.  I miss the little girl whose laugh was infectious, danced constantly and sang at the top of her lungs all.day.long.  I miss the little girl who played happily in her room for hours on end; entertaining herself beautifully so I could get things done.  I miss the little girl who didn’t know the feeling of anxiety and had no clue what obsessive compulsive disorder was and how horribly it can derail your ability to live.  I miss the little girl who loved everyone, especially me.

That little girl is gone right now and my heart aches.  It is a heartache that I cannot even begin to put into words.  It is like someone is stabbing me in the chest repeatedly with a knife and twisting it each and every time.  I have a constant ache, not the kind I have always had since before she was born.  That one was tolerable; this one is so much worse.  This ache is one of loss.  Yes, I know she is still physically here but in a way it is like she isn’t.  The little girl that she was prior to March is long gone and from my understanding will be forever.  I am grieving so badly to have that little girl back…..yes, she was still sick but not like she is now.  If I could just have the little girl back prior to March, sickness and all I WOULD TAKE IT and not complain.  The physical sickness, the Down Syndrome, the fevers, the tummy issues are all manageable….this HORRIFIC, UNCONTROLLABLE PANDAS is not!  PANDAS stole my little girl and I despise it!  I hate PANDAS.  I hate what it has done to my sweet, innocent little girl and what it has done to my family.  I hate that we can’t go anywhere or do anything.  I hate that we don’t laugh anymore.  There is no peace, there is no joy and there is no happiness.  I hate that we are prisoners in our own home and I hate that life is passing my little girl by with no friends, no exciting adventures and no joy!

I HATE THIS!  I HATE THIS!  I HATE THIS!

As I prayed over her last night as she was falling asleep, I told God that I knew He had a plan and I trusted Him; but I don’t understand.  I begged, pleaded and cried out to Him to heal her as He is the only one who can.  I still believe that.  I still trust Him and I still know that in His timing He will make all things good!  But, I am human and I can’t sit here and tell you that I am enjoying any of this.  I can’t sit here and tell you that I count it all joy.  I wish I could.  I wish I had the spiritual strength like Job did.  I wish I could sit here and say “Bring it on,” but in full disclosure and complete honesty…..I cannot say that.  I am not strong enough ALONE.  It will ONLY be the grace and mercy of my Heavenly Father that we get through this and when we do; HE alone will receive the praise!  There will be scars…..they are already there.  It has taken a toll on my marriage, my mothering skills, my homemaking skills and my duties as a wife.  I cannot lie, I refuse to sit here and let anyone think I am Wonder Woman and have handled this well.  I do the best I can, but without Christ…..I would have already given up!  Truth!

I look at the pictures that line the walls of my hallway and I cry.  I cry out for that little girl in those pictures.  I cry out for the life prior to March and I cry out to the ONLY ONE that can give me all of that back…..JESUS!

Jesus, Jesus, Jesus there’s just something about that name.  Master, Savior, Jesus like the fragrance after the rain.  Kings and kingdoms will all pass away, but there’s something about that name! 

One day, In God's timing, we will have another picture like this one.  Smiling, joyful and WHOLE!

One day, In God’s timing, we will have another picture like this one. Smiling, joyful and WHOLE!

Until next time……..

Advertisements

Wish We Felt Like Celebrating

Even when there is something to celebrate, in the difficult times of life, it is the hardest thing to do.  Celebrations are happy times and right now we are anything but happy.  Hannah is having some really challenging days right now and frankly it is all Dennis and I can do to keep from drowning in this sea called life!  Our hearts are being ripped out of our chests and stomped on (that is how it feels anyway).  Hannah is really going through something that NO adult much less child should have to.  From the brain inflammation wreaking havoc on her personality and behavior to extreme tummy issues to low levels of ferritin among other things in her body to daily fevers and low immune system well frankly….it is all almost too much to handle for her and us too.  So, even though today is a day to celebrate, no one feels like doing any celebrating….but, I didn’t want the day to go by without telling you why we should be celebrating!

44 years ago today a cute little baby boy was born.  That cute little boy grew up into a handsome man who became my husband 13 years ago.  A man who has the most incredible work ethic, loves God, his family, his friends and his country.  A man who sacrifices so much so that I can stay home with Hannah; he provides our needs and some of our wants.  He comes home from working a very difficult job to a frazzled wife that is usually still in her pajamas with no make up on (at least my teeth are brushed) and he doesn’t complain about it.  He eats what I put in front of him which lately has not been what he is used to as I have had to keep things simple and easy.  He accepts being put on the back burner and puts Hannah’s needs in front of everything.  He quietly gets up each morning and leaves while Hannah and I sleep in but not before turning the coffee pot on so I have hot fresh coffee upon stumbling out of bed.  He calls and checks on us throughout the day and has put up with the hormones of menopause, emotional distress, mental anguish and much more from me!

Yes, today is Dennis’ birthday and I am so thankful that he was born 44 years ago!  He deserves to be celebrated not just today but everyday.  Unfortunately, that doesn’t happen.  To top it off he will celebrate 20 years with the Sheriff’s Office this Thursday!  This truly should be a week of celebrating but instead it is a week of doctor visits, sickness, possible hospital stays (I will know more about that at 4pm today) and a little girl who is FLARING horribly!

I am thinking Dennis deserves a do-over for his birthday!  I did want to take a minute though and at least document that it is his birthday and how much Hannah and I are blessed to have him and how loved he is!

Happy Birthday Dennis……somehow, someday we will make this up to you and ONE DAY, Lord willing……there will be some normalcy….some happiness…..some joy……health and peace!  Until then, I love you…..always will!

Until next time……..

Weekend With Henny and Supporting A Good Cause

What a whirlwind of a weekend; but so worth it.  Now, I will be the first to admit that traveling with Hannah is NOT fun right now.  Her anxiety, tummy issues, PANDAS (which has too many symptoms to mention), fever and very low immune system actually makes me crazy when traveling.  It isn’t what it used to be and for that reason going anywhere (even leaving the house to go to the doctor) is challenging to say the least.

But, a couple of months ago Henny’s Puppy Raisers, Marty and Cathy invited us to come spend the weekend with them in Orlando to see Henny and go to the Canine Companions for Independence Fundraising Gala.  Dennis and I went to the Gala last year and had the best time and we were so excited to be invited to attend again this year.  Of course, Hannah couldn’t go to the Gala but my brother and sister-in-law stepped up and willingly gave up their Saturday night and traveled to Orlando to keep Hannah so we could attend the Gala.

We arrived at Marty and Cathy’s on Friday evening and had the best night laughing, talking and visiting with them and our dear friends Jeff and Lori.  Hannah had a great time with ALL the dogs.  Did I mention that in addition to Henny, Marty and Cathy have 4 other dogs?  HA!  It was a dog-fest for sure!  Hannah was in doggie heaven!  I was a horrible picture taker though and the only picture I have from Friday night was this one that Dennis took:

Cuddling with Henny!  Oh how I miss this dog!

Cuddling with Henny! Oh how I miss this dog!

I know, I know….I am a cat person and here I am squeezing the lovin’ out of a DOG!  Oh, but let me tell you, this is NO ordinary dog.  She is our Henny-girl and she is a very well-trained love-bug!  I will always be a cat person, never doubt that but I am a Henny person too!  I like to think of her as a cat in a dog’s body!  HA!  No, seriously, I couldn’t stop cuddling her.  She even slept with us that night.  Funny thing is, Hannah woke up 3 times Friday night and walked in our room.  Each time, Henny got up with me and walked with me as I took Hannah back to bed.  Even being away from her this long, she still wanted to make sure everything was okay with Hannah.  How can you NOT love that?

Marty and Cathy so graciously opened their hearts and home to us.  They are family…..there is no other way to describe them other than that!  They have taken us in like their own.  They are willing to care for Henny with all of their other responsibilities until we can get her back.  They text Hannah pictures every morning and every evening of Henny with a cute caption.  They pray for us, they encourage us and they treat us like their own flesh and blood!  We are so grateful to them and for them.  I have praised Puppy Raisers many times and the work they do for Canine Companions for Independence but what Marty and Cathy have done and are doing for us is above and beyond the job description of Puppy Raiser!  Family……that is what this is!

If you know me, I don’t trust many people when it comes to taking care of Hannah.  Quite frankly, most people couldn’t handle what has to be done and the amount of time it takes to do things (like sitting on the potty 4-5 hours each and every day with her).  So when Tracy and Sharon (my brother and sister-in-law) were willing to take care of her for 5 hours on Saturday night so we could go to the Gala I was beyond grateful.  So, they drove down to Orlando and took care of Hannah so we could attend the Gala.  What a blessing that was for Dennis and me.  Number one, to just have a night out and number two, to support a wonderful cause; one that is so near and dear to our hearts.

The Tales and Tails Gala is the largest fundraiser for the Southeast Region of Canine Companions for Independence.  It is an incredible event with a silent and live auction, guest speaker, delicious dinner and desserts and awesome entertainment.  The guest speaker this year was Jason Morgan.  He is a graduate from the Canine Companions Wounded Warrior Initiative and his story is heartbreaking, yet amazing.  What he endured serving our country; almost paying the ultimate sacrifice yet surviving and pressing on; defeating the odds and now sharing his amazing story.  A story that will give you chills and pull at your heartstrings!  This year Kenny Loggins and his new band Blue Sky Riders were there and they were awesome. I actually got to meet Kenny and his band members Georgia Middleman and Gary Burr but my stupid phone died and I didn’t get a picture!  But, needless to say it was a wonderful night of fun and entertainment for a very worthy cause.  Our friends from Jacksonville, Mark and Julie drove down to attend the Gala with us.  I think they really enjoyed it too and it was fun having the opportunity to hang out and catch up with them since I don’t get out much at home!

I would have included pictures but they all had Dennis in them and you know he doesn’t want his picture on my blog so I have to respect that….but, they were really good pictures!  HA!

As difficult as it is to travel with Hannah, this was a weekend that was so worth it for us!  Because of Canine Companions I have met some of the most wonderful and incredible people.  Some of our dearest friends are associated with Canine Companions whether it is in the form of Puppy Raisers, Trainers, Recipients, Facilitators or Staff Members; they truly are some of the most wonderful people I know!  They live all over the country and I am blessed to call them friends!

If you are ever inclined to donate to a cause that is a worthy one, may I recommend Canine Companions for Independence to you?  They place “Exceptional Dogs with Exceptional People” and frankly, what is better than that?

Until next time……..

Fall……The Good, The Bad And What I Long For

WOW!  I cannot believe it is October already.  I love fall….the weather, the clothes (I am a jeans and boots girl), the food (soup especially since Dennis refuses to eat it if it is hot outside).  The new fall premiers of my favorite shows which are mostly police and hospital ones.  I love opening my windows when it is cool outside and feeling that cool air coming in.    Summer has ended and we get a short break from the intense heat that we (Dennis and I) hate here in Florida.  Fall is like a needed break that God gives us.  A time to slow down right before the holidays and take it all in.  I love the beginning of the holidays….the excitement that they are just around the corner.   These are the things I love about fall.

The only thing I detest about fall is football.  I seriously despise football!  I just cannot wrap my head around watching a bunch of college kids or grown men run or pass a ball down a field and getting any kind of enjoyment out of it.  I know, I know, I am one of only probably 3 people in America that hates football but in all fairness I hate all sports except NASCAR and even then I am not going to sit down and watch NASCAR.  I get no enjoyment out of watching cars drive around and around and around in circles for hours on end unless I am at the race track!  Now that is FUN!  Anyway, I guess my hatred for football didn’t really start until I married Dennis, although for the record I never watched it before I met him either.  He really only cares about college football but my gosh he watches it all.day.long on Saturday!  How anyone sits and watches the TV for that long is beyond me.  It doesn’t matter WHO is playing, he is watching!  Now, if his Gators are playing it is best to just get out of the house.  That was much easier for me before Hannah was born as I would just get my purse, hop in the truck and go shopping.  Not as easy now with Hannah especially since she is pretty much homebound.  Today, thankfully the weather was beautiful so Hannah and I went outside when the game started so we were able to avoid the “excitement” of the game!  Dennis does MUCH better now than he used to; but I still just shake my head and inwardly laugh at his antics.  I am sure he isn’t near as bad as others either.  There is so much passion that people have for football and especially the teams they are pulling for.  I just don’t understand it.  Never have and never will; but that is me!  To each their own…..of course, I will say that I have teams that I would pull for if I really cared and those are the Georgia Bulldogs and Vanderbilt!  So, even though I am certainly not passionate about football, if I were, those would be the teams that I would be passionate about.  So, at least I can say “Go Dawgs” or “Go Vandy” if I am ever in a position where my life depends on it (although I doubt that will ever be the case).

This post really wasn’t about football but I kind of got off on a tangent…..sorry!  I guess I was just sitting here thinking how much I love fall and I always look forward to it and this year it just isn’t what it usually is.  I look back at this time last year and even though Hannah got sick on September 23rd last year she wasn’t as “sick” as she is now.  So much of Hannah’s really bad illness didn’t hit until January and March of this year.  Yes, she was SO very sick all last fall with fevers and bacterial infections; one right after another, but she was Hannah.  Her personality hadn’t changed and she was happy and content.  There was no OCD or tics and even though she ran fevers everyday, she was happy in spite of them.  So, today I have looked back at this time last year and longed for that little girl back.  Every night as she is going to sleep I pray over her.  I ask God to give me the little girl back that I had prior to September 23, 2013.  I ask Him earnestly and desperately to take PANDAS away, fix her tummy issues, take her fevers away, take her autoimmune diseases away and to rebuild her immune system.  He hasn’t given me the miracle I am praying for, as of yet, and even though my faith is firmly planted in Him there is still a sadness in my heart and soul that I can’t really put into words.  It is a sadness that some days I can overlook and other days that I can’t see past.  Today has been one of those days that I have had trouble seeing anything else.  I tell myself that it could always be worse.  Some days that helps me and other days, it does not.

The past few days with Hannah have been difficult.  All of her tummy issues have flared again and she spends HOURS in the bathroom each and everyday.  I am not exaggerating either…..HOURS!  It is bad enough when the 4 walls of your home start to close in on  you, but the 4 walls of the bathroom close in MUCH quicker and it truly is HELL!  There is no other word……there are days that I literally look up to Heaven with tears streaming down my face asking God to please, please, please heal my little girl so she can live a “normal” life!  Heck, I just want her to have a “normal” Down Syndrome life!  I long for the “Old Normal”.  We enjoyed it but I took it for granted and now I just long to get it back!

My prayers will continue, my hope and faith will stay firmly planted in the Lord and my dream for better days will stay alive until God grants me my petition.  But, I am only human and some days I might have that overwhelming sadness consume me but I know God’s mercies will be new every morning!

blog-His-mercies-are-new-every-morning

 

Until next time……….