Fun Day At The Heart Carnival

We don’t do anything in the evenings during the week with Hannah mainly due to the fact that school wears her out and she is in bed asleep at 6:15 every night.  We don’t do alot on the weekends with her, as it usually just proves to not be worth it.  Either she ends up getting sick or it is just too overwhelming with too much stimulation.  Dennis and I are also VERY frugal and there is just not alot of entertaining things to do that are cheap.  Plus, as I say over and over again…..it is very stressful for this germaphobe mama to be out and about.  Unless you have had a VERY sickly child you can never fathom the actual “fear” that I live with EVERYDAY.  The fear of germs, the fear of sickness, the fear of hospitalizations…..etc….it just isn’t worth the stress.  Fortunately, we have ALWAYS just been home and Hannah doesn’t know that most kids and their parents are on the go constantly.  Hannah is very happy and content to play in her room, read books, play outside and now be with Henny!  Please don’t misinterpret this, as we do fun things with Hannah, they are just spaced out…..just not every weekend.  We pace ourselves and always have Hannah’s best interest at heart!

Anyway, today was a different Saturday for us as we got out and went to the Heart Carnival that is put on by Hannah’s Cardiology group every year.  In 7 years, we have only missed one due to Hannah being in the hospital.  It is alot of fun and we look forward to the good food and fellowship with other “heart” families each year.  We had a great time, even better than usual as we had Henny with us this year.  Henny got ALOT of attention from people and she LOVED every second of it.  She is officially worn out and crashed out upside down on my bedroom floor as I type this!

I have said in past blog posts that WE ADORE Hannah’s cardiologist Dr. Marvin……he is like family to us and being able to see him and the other doctors and surgeons outside of clinic is really nice.  I took a few pictures with my cell phone that I thought I would share from today’s adventure!

Hannah kissing Henny!  I seriously LOVE this picture!

Hannah kissing Henny! I seriously LOVE this picture!

Henny needed a hug

Henny needed a hug

Dr. Marvin's grand-daughter is there every year and she and Hannah always hang out.  This is Olivia teaching Hannah some tae-kwon-do moves!

Dr. Marvin’s grand-daughter is there every year and she and Hannah always hang out. This is Olivia teaching Hannah some tae-kwan-do moves!

We LOVE Dr. Marvin!

We LOVE Dr. Marvin!

So, that was our day today.  It was BEAUTIFUL weather, quite breezy, which was nice as living in Florida the heat and humidity can put quite a damper on outdoor activities, but not today!  Now, I just pray that Hannah stays well from our day of fun!

Until next time……..

What A Good Dog

Since we got Henny, a question I get asked all the time is, “what is Henny trained to do for Hannah.”  The answer to that question is that Henny is a well-trained dog, but what she does for Hannah goes so much further than what she was trained to do.  Henny has about 40 basic commands.  Everything from a command to go potty, one to eat, one to sit and lay down.  We have many commands for Henny, but what she actually does for Hannah is far more than any command that I can give her.

The main reason we got Henny was for companionship since Hannah is and always will be an only child.  But, besides that the thing that sticks out the most with Dennis and me is the way Hannah’s speech has GREATLY improved in the past 2 1/2 months.  Hannah WANTS to communicate with Henny and does so beautifully.  She carries on conversations with the dog that I never thought I would hear.  Hannah has learned all of Henny’s commands and amazingly gives the commands and praise appropriately.  When talking to Dennis and me she is using more than just one or two words when she speaks…..she is actually talking in broken sentences, which is an incredible accomplishment for her.  I was wondering if I would hear Hannah speak with clarity more than one or two words at a time, and she is!  It is amazing the improvements just in Hannah’s speech since we got Henny a little over 2 months ago.

We are blessed because Henny is a VERY CALM dog.  I think once the trainers at CCI met me and Hannah, they immediately realized that CALM was the #1 thing we needed.  I would have not done well at all with a hyper dog, so in that aspect, Henny is perfect.  She lies on the floor and lets Hannah do anything to her; whether she is giving Henny a “check-up” or a dentist appointment (yes, my child is infatuated with Henny’s teeth and mouth hygiene)….whatever the case, Henny just lets Hannah do whatever.  One of Hannah’s favorite things is to use Henny as her pillow and Henny doesn’t mind one bit.  Of course, you have seen the pictures of them kissing and hugging…..those 2 things happen MANY times each day.

Henny is just a great dog that in a few short months has helped Hannah in so many ways.  Henny lies on the floor at night as we read Hannah a book, she stays there as we say bedtime prayers and will make sure Hannah is asleep before she leaves her room for the night.  Henny just knows that she has been placed in our home for Hannah……and in the process has done things for Hannah that I never expected to happen……what a good dog!

Hannah singing with her iPad with her sweet Henny resting comfortably.  That singing sure was loud, but Henny didn't seem to mind!

Hannah singing with her iPad with her sweet Henny resting comfortably. That singing sure was loud, but Henny didn’t seem to mind!

 

Good Girl Henny, Good Girl

We have had a busy few days, hence my lack of blogging!  When we left CCI (Canine Companions for Independence) in February and brought Henny home we were only given a short certification.  You have to pass a test and carry a card that certify’s us to take Henny places where dogs aren’t allowed (restaurants, malls, church, etc.).  They only certify you at first for a couple of months and you have to re-qualify again.  I think the main reason is that they don’t want you to get home and “spoil” the dog and not keep up with the training, grooming, diet, exercise, etc.  They want to make sure that all of that is maintained throughout the life of your dog.

Anyway, all that to say that yesterday (Friday) was our day to re-qualify.  We left Thursday after Hannah got out of school and drove down to Orlando to the CCI Campus.  It was great being able to stay there and saved us a hotel bill.  On Friday we got up and headed to the Altamonte Springs Mall for our test.  What most people don’t understand (unless you have a canine companion) is that there are proper ways to do everything for these dogs.  Getting in and out of the car, walking, toileting, eating, etc., there is a proper and learned way for all of it.  So, when we arrived at the mall, one of the trainers came to the car to watch me get Henny out and from that point on everything that I did was watched and graded.  I have to be “in control” of Henny at all times; even with distractions and trust me the trainers make distractions on purpose, as part of the test.  It is a little nerve-racking….especially for this Type A personality who has to be “perfect” in everything that I do, even though I fail at perfection daily, it isn’t from lack of trying!

Henny, on the other hand, was not nervous one bit.  Here is a picture of her before we left the CCI Campus to head to the mall:

Sacked out before the test on our bed.....not an ounce of nervousness!  I had enough for both of us!

Sacked out before the test on our bed…..not an ounce of nervousness! I had enough for both of us!

Of course, as was pointed out by several people after the test…..I had NOTHING to worry about.  Henny did GREAT, even when the trainers were dropping oreo cookies in front of her…..she was so good not to go for them!  Just a side note, had she gotten an oreo, I would have had to go in her mouth with my hand and get it out…..my OCD/germaphobe-self would have NOT have been happy about that.  These dogs, especially Henny respond VERY well to praise.  In fact, I have taken ALOT of what I have learned from training with Henny and applied it to Hannah.  It is amazing that raising a dog and a child are not much different, HA!  I will be the first to admit that these things that work for a dog would NEVER work for a cat!  Anyway, back to the oreo’s, I just praised Henny and encouraged her not to get the oreo’s and she responded perfectly…..she would just look up and away and ignored those dang oreo’s…..now, Dennis was a different story….HA!

The test went perfectly and we now have a year certification.  After a year, if all goes well then we will get a 1-3 year certification based on the trainer and what they feel is best for me and for Henny.  It was a quick test and we were done by 11:30.  We only got to see one of the families that we were in training with, but it was SO good to see them and catch up briefly.

After we finished with the test, we met our new “family,” Marty and Cathy for lunch at Bahama Breeze.  They were Henny’s Puppy Raisers and we just LOVE them.  It is so neat to watch Henny when she sees them, she knows them and she absolutely goes crazy; always so happy to see them.  We had a great time with them, so thankful to them for what they did for Henny and for us!  It truly is the Puppy Raiser that gives all these dogs the foundation that they need to then go to Advanced Training and be given to a family as a companion and/or service animal.  Without the Puppy Raisers there would be NO canine companions!  SO THANKFUL!

After lunch, we headed on back to Jacksonville.  We would liked to have made a long weekend in Orlando out of it, but we had so much to do at home this weekend.  We are planning to go back to Orlando in May for the May Graduation at CCI, as it is being held in Sea World, so that will be a fun trip!

Well, I have a bazillion things to do so I had better get to it.  I will leave you with one last picture of Henny as we drove home yesterday……she looked like this the entire 2 hour car ride home:

All tuckered out from a busy day in Orlando

All tuckered out from a busy day in Orlando

Good Girl Henny, Good Girl!

Until next time……..

Worn

I don’t care who you are…..everyone has struggles in their life.  Some people seem to have more than others, but at one time or another, struggles are something that we all face.

I can only speak for my struggles, mainly due to raising a child with special needs and lots of health issues.  It isn’t easy and at times I think I am at the end of my rope and that I can’t take another day.  I feel like that and then the Lord gives me just enough strength to get past it.  It gets better for a period of time and then again, I am worn.

There is a song that Tenth Avenue North sings called “Worn.”  It is MY song right now.  I actually heard it twice in the car yesterday and realized it is the exact way that my heart, body, mind and spirit feels right now.  If you haven’t heard it, go listen to it, but here are the lyrics…..

Tenth Avenue North – Worn Lyrics
Verse one:
I’m tired I’m worn
My heart is heavy
From the work it takes to keep on breathing
I’ve made mistakes
I’ve let my hope fail
My soul feels crushed by the weight of this world
 Pre-chorus:
And I know that you can give me rest
So I cry out with all that I have left
 Chorus:
Let me see redemption win
Let me know the struggle ends
That you can mend a heart that’s frail and torn
I want to know a song can rise from ashes of a broken life
And all that’s dead inside can be reborn
Cause i’m worn
 Verse two:
I know I need to lift my eyes up
But I’m to weak
Life just won’t let up
 Pre-chorus
And I know that you can give me rest
So I cry out with all that I have left
 Chorus:
Oh Let me see redemption win
Let me know the struggle ends
That you can mend a heart that’s frail and torn
I want to know a song can rise from the ashes of a broken life
And all that’s dead inside can be reborn
Cause I’m worn
 Bridge:
My prayers are wearing thin
Ya I’m worn
Even before the day begins
Ya I’m worn
I’ve lost my will to fight
I’m worn
So heaven come and flood my eyes
 Final Chorus:
Let me see redemption wins
Let me know the struggle ends
That you can mend a heart that’s frail and torn
I want to know a song can rise from the ashes of a broken life
And all that’s dead inside can be reborn
Yes, all that’s dead inside will be reborn
Though I’m worn
Ya I’m worn

I am a FIRM believer that God doesn’t give us more than we can handle, but I do believe that sometimes He allows us to be pushed to the “edge” until all we can do is cry out to Him.  I am in no way saying that my life is bad or that I have it worse than anyone else, because my life isn’t bad and I know alot of people that struggle way more than I do….but, the truth is…..some days it just isn’t fun and it just isn’t a bed of roses!

I will be the first to admit that I don’t understand the struggles of single parents or the struggles of parents with more than one child or those with typically developed children.  I don’t understand the struggles of single people or those that want children and can’t have them.  I can’t imagine the struggles that so many people have; the things I don’t struggle with, just like most don’t understand the shoes in which I walk.  Other parents with special needs children understand more, but we don’t share all the same struggles.  The bottom line is that we all struggle and NO one but the Lord truly understands.  He is the one that gave each of us our different journey’s to walk and I am finally realizing that I will never have someone that completely understands except for Him.  That is why, when I do struggle He is the one I cry out to…..He is my refuge and strength…..Psalm 46:1.  I also cling to 2 Corinthians 4, the whole chapter is encouraging….but, verses 17 & 18 say:

17 For our light affliction, which is but for a moment, is working for us a far more exceeding and eternal weight of glory, 18 while we do not look at the things which are seen, but at the things which are not seen. For the things which are seen are temporary, but the things which are not seen are eternal.

Thankful for God’s word and His promises…….

I saw this picture posted on Facebook the other day and it is so true……

Lion_Bob Marley

Until next time………

For A Brief Moment

I don’t get Girl’s Night Out very often.  They are so few and far between that I am very selective when I do, as to who I go out with.  I want the rare moments to count, I want to cherish them and frankly I have a small handful of friends that I want to spend those rare moments with.

Last night was one of those nights.  I had the opportunity to go out with 2 of my Down Syndrome mama’s.  We laughed and shared stories, but we also supported each other and encouraged each other with our struggles, which are MANY!  For a brief moment…..I smiled……I laughed and I enjoyed my life again.  For a brief moment I forgot that I was a mom to a special needs little girl, a wife to a cop and I was once again Tamara.  I “lost” Tamara 7 1/2 years ago.  I am not complaining, but it is just what happened.  I HAD to forget about me, my wants and my needs because I had a tiny little person that needed me 100%…..she needed me 24/7 and I have sacrificed so much so that I could be what and who she needed me to be; but that didn’t come without some heartbreak for me. Anyway, we enjoyed a wonderful meal at Maggiano’s and relaxed.  Relaxing is something I don’t do very often…..heck, with my uptight, type-A, anal-retentive, OCD, germaphobe personality, it is extremely difficult for me to relax and it truly felt so good.

I needed last night.  In fact, before I left the house I told Dennis…..”please don’t take this wrong, but I have NEVER been so ready to leave this house as I am right now.”  The last couple of weeks have truly been….well, for lack of a better word….hell, for me.  Sorry if that “word” offends anybody, but it is the honest truth.

I share alot in my blog, sometimes probably too much, but trust me, I don’t share everything……if I did someone might either institutionalize me or at the very least send me to therapy!  There is so much I don’t even share with Dennis; only because he wouldn’t be able to understand it completely….heck, I don’t understand it completely myself and I am living it.  All I know is that life is hard, complicated and not always fun!  I love my husband and I love my sweet Hannah……but there are things I miss.  I don’t always LOVE being a mom…..in fact, some days I actually think…..”what was I thinking….” (just being honest here).  I don’t know…..this morning I just woke up very sad and of course it doesn’t help that Hannah ONLY wants her dada and he has not been around lately, no fault of his because he has been working and someone has to pay the bills around here….but the fact is, she misses him SO much when he isn’t around and frankly, she takes it out on me.  Life has not been easy the last 7 1/2 years and there are some weeks that are horrible and some weeks that are good……we are just in a “not good” place right now…..hence my sadness.

But, one thing is certain…..it will get better and maybe I can get through this life without therapy, but that is left to be seen!

Enjoy your Sunday, until next time………

The Walking Tree; Fun With Hannah, Henny and Friends

We had a great time this morning at Hannah’s school fundraiser “The Walking Tree.”  We enjoyed seeing Hannah’s classmates and other school friends, teachers and staff.  The event was held at Episcopal High School and alot of the high school students that go there came out to help with the kids from Hannah’s school!  What a wonderful sight to see…..all these high school students that I am sure had better things to do on their Saturday morning (like getting ready for prom tonight) and yet they were there to help, love on and care for all the kids from Hannah’s school.  Absolutely amazing sight to behold.

We all walked 4 laps around the school track (1 mile) and had a wonderful time.  We took Henny with us too and she was happy to be out around people and loved getting the exercise.  Henny also got to see her friend Taz (a beautiful black lab/retriever mix that was in Advanced Training with her at Canine Companions for Independence).  They are good friends and happy to see each other.

We had a wonderful morning.  Here are a couple of the pictures I took of Hannah and Henny while we were there……

Give me a kiss before our walk Henny!

Give me a kiss before our walk Henny!

Big girl sitting waiting for the walk to begin

Big girl sitting waiting for the walk to begin

No better way to spend a Saturday morning than with my sweet family and our extended family from Hannah’s school……Hannah had a blast and didn’t want to leave!  We promised her Chick-fil-a nuggets and fries for lunch though…..her favorite meal!  What a great day.

Now to go get ready for my Girls Night Out…..oh how I need that!

Until next time…….

Proud Mama

I have to take a quick minute and I promise it will be quick today because I don’t have much time, but I have to give a “SHOUT-OUT” to my Hannah!

On Monday, when I opened her notebook, her classroom newsletter was in it and guess who is the Star Student for the month….HANNAH is!  Proud Mama moment #1!

Hannah Star Student

 

Then, today around 10am, my cell phone chimed and it was a text from one of her teachers with this picture:

Hannah and the school's Executive Director

Hannah and the school’s Executive Director

Hannah was awarded Student of the Month Award at her school!  YAY!  So proud of her and how far she has come in the last few months.  We had a couple of months there where I was beginning to wonder if she needed some “behavioral intervention” because of her school behavior.  So thankful that the school staff and teachers worked not only with Hannah but with me so we could help Hannah together!  Nothing like having your child in a school where YOU KNOW she is safe, loved, cared for, protected and taught the best way for her to learn.  I have said before that kids with Down Syndrome learn differently than “typically developed” kids and we feel so blessed that she is in a school that recognizes her needs and gives her the individualized attention that she needs to set her up for success!

We LOVE North Florida School of Special Education and feel so blessed to be part of the family there!  Thank you to all the staff, teachers, students and other parents for the critical role you have played and continue to play in the life of Hannah and our family!