We All Have A Journey

Over the past few years I have had so many people say to me, “you have been through so much,” or “I don’t know how you do it, I couldn’t do what you do.”  I have learned though to be real careful how we compare ourselves to others.  We all have a journey.  We all have difficulties in our lives.  We all face hills and valley’s.  We all have good times and bad.   Nobody’s journey is any worse than another and we have to be so careful to make sure we ALL remember that everyone is fighting a battle we know nothing about.  I have been guilty of looking at my situation and thinking “am I the only one going through a difficult time?”  I have felt so alone so often but then God reminds me that I am not alone because others face their own problems everyday.  Some people don’t discuss and put their problems out there as they prefer to remain private; which I totally understand.  I blog for therapy, thus probably at times putting more out there than I should.  We should never just assume just because someone doesn’t ever talk about their difficulties, it doesn’t mean they don’t have them.  Some people live very private hell’s.   I think something worth always remembering is that we ALL face different and sometimes very horrific problems.  Some have problems with their spouses, kids, parents, friends, employees and co-workers.  Some face major health issues while others face financial issues.  Some people live through all kinds of abuse (mental, emotional and physical) and others face extreme pain because of mental health issues, depression and self-esteem issues.  We ALL have a journey……

Life isn’t a competition…..I see this all too much.  People constantly comparing themselves to others.  Mom’s are the worst…..constantly trying to “out-do” another.  Health and fitness, throwing parties for their kids/husbands/work, cooking gourmet meals, trying to be Superwoman but losing sight of just being who God created us to be.  I am guilty of the “comparison issue.”  Why can’t I be creative like so and so.  Why can’t I throw parties like them?  Why can’t I find the time, energy and motivation to do it ALL like someone else?  Then, I come back to MY reality and I realize I am doing ALL I can with what I have in MY circumstances.  I don’t have the freedoms to get out and go like others.  I don’t have the finances or the size home to “throw big parties.”  I don’t have the time to always plan and cook gourmet meals, although I do find time to cook daily for my family.  My circumstances define what I am capable of, just like others circumstances and journey’s define what they are able to do and accomplish.  I get things done during the week that a lot of mom’s have to wait until the weekend to do because of working full-time jobs.  Life isn’t a competition.  We all do what we can, when we can and how we can in the way that works for us and our families.  It is so heartbreaking to see the competition out there instead of the camaraderie that there should be.  We shouldn’t criticize or tear each other down.  We should support, love, understand and accept each other the way we are!  Instead of making everything a competition and allowing jealousy to take over…..just do what you can do with what you have to work with…..PERIOD!  We are ALL Superwoman!  Whether you are mom’s or not.  Whether you are single or married.  Whether you work outside the home or are a full-time housewife…we are all doing what we can with what we have.

Don’t compare yourself…..commend yourself.  Stop trying to live up to an image that you have in your mind as the “perfect picture” of wife, mother, employee, etc.  Just be YOU…..do the best at being YOU!  No competition, no comparison, no pressure, no failures……just be and do what God called you to be!  Nothing and no one else matters!  Just do what you can with what you have.  We all have a journey…..live YOURS, no one else’s!

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Until next time………

 

Standing The Test Of Time

Friends….one of God’s special ways of blessing us.  I have some special friends.  Some I have known all my life.  Some I have known since I was in school and some more recent, but each one of my friends has touched my life in a very special way.  I believe God brings people into your life sometimes for your lifetime and sometimes for a season, but each person that becomes a friend is serving a very special purpose.  I think you are blessed to find 1 or 2 lifelong, lifetime friends….those friends who stand the test of time; through the good and bad, highs and lows, ups and downs.  When marriages fail, those friends are still there, when you have sick kids or get to the age where you are caregiving for your parents, those friends are still there.  When you make mistakes and fall flat on your face, those friends are still there…..through happy and joyful times and sad and grieving ones; those friends remain.  You have a constant source of support; no matter the distance between you or the time where you have been apart…..it doesn’t matter, you pick up right where you left off.  Those friends are your chosen family……nothing and no one can change that!  I have been blessed in my life to have many friends that have stood the test of time.  Friends I met in elementary school, many in high school, those that I met growing up in church, some dear ones I met on Facebook and in recent years those that I share many things in common with because our children have Special Needs.  Some brought into my life more recently because of a dog, those friends are truly family.  I could go on and on in the way God has blessed me with many friends.  I have also learned through this journey though that some people you thought were your friends truly are not; but that is a different story for another blog post.

Last night, after many months of saying we were going to get together and many weeks of planning it, I had the privilege of meeting up with 3 of my best friends from high school…..25 years after we graduated and we sat around a table at Bahama Breeze for 3 hours talking, catching up and laughing (sometimes hysterically).  All 4 of us live such different lives….kids, husbands, divorces, jobs…..many things pulling us in different directions and yet, when we got together it was almost as if no time had passed.  We picked right up where we left off 25 years ago!  For the most part after graduation I lost contact with all 3 of them and then through Facebook we all reconnected several years ago and it was like we never lost time.  These girls are the real deal.  They are authentic, smart, great moms and have a strength and resilience about them that stands out.  As I sat there last night I found myself so grateful that after 25 years I still had these girls in my life.  We don’t see each other often but I know they are there and sometimes just knowing you have a friend and that friendship has truly stood the test of time; is a very comforting thing.

As I laid in bed last night, I thanked the Lord for friends……the lifelong ones, the ones that I had for an important season in life and the ones that are more recent.  I realized one of the greatest gifts God gave us are our friends.  As I laid there and thought of so many friends over the years I found myself feeling very content and very thankful that God chose to bless me with so many good ones.

Tammy, Me, Suzanna and Amy......25 years after graduating high school....thank you girls for your friendship all these years!

Tammy, Me, Suzanna and Amy……25 years after graduating high school….thank you girls for your friendship all these years!

Until next time……….

Wish Life Had An Easy Button

I will be honest, I took a few days off from blogging because everything on my heart was so heavy that I just couldn’t even form words without sounding so negative and depressed; so it was better for me to bottle it up and keep it to myself.  You are welcome!  HA!

As I was laying in bed last night trying desperately to fall asleep I kept thinking about mine and Hannah’s days and what they look like.  I even found myself asking God why even on our best days; things are just so dang difficult?  You know that commercial, I think it might have been Staples….they had an easy button and you just pushed it and BOOM, whatever you were needing was right there?  I wish life had an Easy Button, but it doesn’t.

I find myself in a constant roller coaster ride with Hannah.  Yes, we have good days; but then we have bad days and let me tell you it takes those few good days to recover from those bad days.  I call my good days,  God’s grace; because without them I would have certainly lost my mind by now.  Hannah is still doing okay from her rages, aggression and anger and I continue to thank the Lord every day that those things have now been gone for almost 7+ weeks.  But, there are a few “new” things that have come up with her.  Things that absolutely make me question why and how much more can she take.  There are many components to PANDAS that affect the area of the brain (basal ganglia) where Hannah has inflammation.  One of the components to PANDAS that I haven’t focused on as much are tics.  Hannah has had some tics but most of her symptoms have been anger, rage, aggression, sadness, anxiety and extreme OCD.  She still has all of those symptoms (except the rage) right now, but they aren’t as bad as they were 2 months ago.  Her tics, on the other hand are out of control.  The tics in the past were facial grimaces, eye blinking, maybe a vocal tic or two like humming or throat clearing.  Now she is having severe or “complex” tics.  Shouting words/phrases out for no reason, clapping and flapping her arms, smelling EVERYTHING including food, toys, clothing and people.  Let’s not even start on the constant repetitive words and phrases she says 4,000 times per day (trust me, I am not exaggerating)!  Enough to drive the sanest person crazy and let’s be honest…..sane has never been a word to describe me.  If anyone is familiar with Tourette’s Syndrome, that is what it looks like.  We have not received that diagnosis but we are most likely dealing with that now.

On top of that, her health is still up and down.  We have what appears to be a low blood sugar thing right now and I am not sure why.  I have been hypoglycemic in the past and I know when it happens to me and what to do about it.  Hannah gets cranky, irritable and somewhat out-of-control before I recognize it happening.  She can’t tell me she is nauseous, or dizzy or shaky.  By the time I see it, she is pale, clammy and about to pass out.  Speaking of passing out……I have been trying to get her moving and exercising.  For 2 years she has been sitting and not moving.  She has had no energy, so I have been putting on these kid counting/exercise videos on YouTube and we have been working out to them.  The other day, after about 3 minutes she started gagging, turned pale and about passed out.  Her body is just so weak, but it was a good reminder to build up slowly like anyone has to do when they have been inactive for so long.  Even kids don’t bounce back quickly.

Life is just not easy…..even on the good days the mundane and routine can sometimes get the best of you.  I try to be positive and I try to remember that in ALL things God works and has a plan.  I try to put a smile on my face and find something to be joyful about.  Some days are easier than others though and there are days that getting out of bed seems like a huge chore that I don’t want to do.  But, I do it because I know Hannah needs 100% of me and the one thing I am not is a quitter.  I am in this for the long-haul even if there is no easy button to be found.

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Until next time………

My Political Rant

Y’all knew this was bound to happen because I can’t keep my mouth shut.  At least I do my ranting behind a keyboard and computer screen so you don’t have to read it and if you are a liberal you might just want to stop here unless you are an open-minded liberal that doesn’t mind hearing another’s point of view; then I welcome you to stay and read for yourself!  Here is what I know regarding the next Presidential election (and for those men that like bullet points instead of paragraphs (Brian), this one is just for you):

  • Change in Washington MUST happen
  • We need a real leader who loves this country (let’s face it, Obama is not a leader nor a lover of this country)
  • Immigration, Our National Security and Our Country’s Massive Debt need to be corrected IMMEDIATELY
  • Hillary Clinton has NO business being President (I could say a lot more but I am trying to keep this very short)
  • There are WAY too many people running on the Republican ticket.  I wish about 12 of them would decide like Rick Perry did and DROP OUT!
  • I watched the debate (well some of it because I wasn’t staying up to watch 3 whole hours last night).  All the commentators wanted to do was cause more dissension than there already is between the candidates.  They kept instigating discourse and arguments between several of the candidates (especially Trump, Bush and Fiorina).  Made me want to scream.  They need to stop fighting amongst themselves and come to together as “like minds” and decide who truly has a chance of winning the next election.

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  • Politicians are so freakin’ arrogant!  Every last one of them, on both sides of the aisle.  They all want power and control but the truth is not many people can handle what running this country takes.  There are actually about 3-4 of the Republican candidates that I truly like; and out of those I think they have a good chance of winning and doing what needs to be done.  But, with that said….there are TOO many with their hat in the ring.  The Republican candidates need to gain some wisdom and insight and learn that they are all hurting the Republican party and agenda by fighting with each other and with so many of them running.  It is utterly ridiculous.  I have lost count of how many are running….what is it 15 or 16 of them?  Crazy!  They really need to have a round-table discussion, grow up, act like men (and lady) and decide together WHO is best for this country and then back that person up 110%!  Wouldn’t that be wonderful?  Heck, I see some great combinations for President and Vice President in those candidates but they really have to come together instead of tearing each other a part!  With too many of them running, it will prove disastrous for the election against Hillary (because let’s face it, she will most likely be the Democratic nominee)…..ugh, just typing that makes me want to puke!
  • Each candidate has some great attributes to bring to the table.  So many of them agreed on MANY issues (there are so many issues that need to be tackled that affect our security, our money, as well as our moral and ethical fiber).  There are things about MANY of them I like but I know there are about 3-4 of them that encompass completely what America needs……I sure wish they (the candidates) would recognize that and also recognize that several of them don’t stand a chance and are only standing in the way of taking our country back!
  • I hadn’t planned on talking about the “moral and ethical” issues that this country faces, but there is one issue that completely sickens me and one issue that every.single.candidate agreed on and that is abortion.  I don’t think we will ever see the day where abortion is illegal.  BUT, the harvesting and selling of baby parts takes the abortion issue to a whole other level that is just plain disgusting!  I am pro-life, as are the candidates running on the Republican ticket….if you had heard Carly Fiorina’s response to defunding planned parenthood you would have seen the passion in her.  In fact, I gave her a standing ovation in my house!  I know Obama would veto legislation to defund planned parenthood but we shouldn’t back down.  The Republicans have backed down and given in to so much and this is one thing that they should stand tall and fight for…..PERIOD!  Again, I didn’t mean to go on an ethical and moral rant (at this time anyway) but that is one issue that has turned into something so vile and so disgusting that I don’t know how people live with themselves wanting to support an organization with taxpayer money, that is so vile and immoral!
  • I wish I could sit down with all of the Republican candidates and talk some freakin’ sense into their lives…..I don’t want to be president but I sure would like the opportunity to speak some truth to each of them…..the truth being that some of them don’t stand a chance and need to do the right thing and step down and let the ones with a chance of winning try to do that!
  • Last comment…..I wish Ronald Reagan was still alive…..I would vote him back into office in a nano-second!

 

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Until next time……..

Peace Out

This will officially go down in the record books as being one of my shortest blog posts EVER!  HA!  Y’all know me I can’t keep anything short…..that is probably why I need to write a book because then I can write chapter after chapter after chapter and not keep it in blog form where you lose most people after 2  paragraphs!  Oops!  I reckon I lose lots of readers with every blog post!

Anyway, had to share this picture so you could see what a little girl with Down Syndrome feels like right before she gets yet another weekly IV iron infusion.

Peace out dude!

Hannah’s “peace out duck face!”

Thankful that this sweet thing can be happy prior to her weekly infusions!  I can’t say I would be!  Now, what you don’t see is the anxiety that she battled all morning before getting to the hospital….but, once there it is almost as if she knows she has to do this and instead of kicking, screaming and crying we get the “Hannah-boo peace-out duck face.”

Thank you for praying for her.  Her ferritin (iron) levels as well as her Hematocrit and Hemoglobin levels are all coming up since we started these infusions.  Please pray that they stay that way!  She truly is feeling so much better and has had more energy the past 3 weeks than she has had in 2 years!  Each deficiency that we treat continues to improve her overall health and for that I am so very grateful!  Please don’t stop praying for us……we have a long way to go still but God is truly hearing and answering ALL of our prayers!

Until next time………

Some Days

Most days I do okay.  I go about my day and I don’t let much bother me.  I focus on Hannah and her needs and I have learned not to care much about anything outside our four walls.  I have learned over the last 10 years not to dwell and focus on outside  interferences.  I focus on Hannah.  She needs me and I know I am where God wants me.

BUT….you knew that but was coming, didn’t you?

There are some days where my heart aches more than others.  Some days were I long for what I don’t have.  Some days where I want the freedoms I used to enjoy.  Some days where I don’t want to spend 2-3 hours in the bathroom with Hannah and some days where I want to do more than clean, cook and have the same conversations over and over and over again.  Those are the days I dread…..I am thankful they don’t happen every day and usually, like I said, I do okay; but all it takes is a little trigger and I get sad.  I think about what “could have been” or what “should be” in a perfect world, of course!

I think being cooped up in our home 24/7, is what takes its toll on me mostly.  The walls start to close in after a few weeks.  That happened on Friday and yesterday I was fortunate enough to be able to get out while Dennis stayed home with Hannah.  Even though the weather was awful (raining heavy and sideways), it was still worth getting out of the house.  I ran a few errands and enjoyed the peace and quiet.  I didn’t even turn the radio in the car on…..silence to me is golden!  I was gone about 3 hours but even when I got home I was still on edge……I longed for more “me” time.  Saturday’s in the fall really suck for me.  Dennis is busy watching 12 different football games and in fact I had a conversation with him last night.  I compared him getting ready for work to him watching football.  When he worked the street as a cop, he would put that uniform on and get in what I called, “police mode.”  His expression would change, his demeanor would get tougher and he would get that “don’t mess with me glare.”  HA!  Well, yesterday I told him, just like work he gets into “football mode.”  His expression and demeanor change and he doesn’t want to be messed with.  I even told him if I got naked and stood in front of the TV he would try to look around me!  HA!  Was that too much information?  Anyway, so Saturday’s aren’t fun around here during football season and you know in the past I have said that Sunday’s are my very least favorite day of the week so I dread weekends!  Pretty sad, huh?

So, last night while he was in the bedroom watching his beloved Gators play, I decided to watch a Hallmark movie in the den…..BIG MISTAKE!  I had recorded one on the DVR (Love in the Stars or something like that).  Anyway, in the movie there was a 9-year-old little girl (a year younger than Hannah) and I sat there and cried through the whole movie.  I mean, it was kind-of a sad love story.  The little girl had lost her mom at the age of 7 and her dad found a new love….blah, blah, blah…..anywhoo, the thing that kept getting to me was realizing this little girl was 9 years old and was having adult-like conversations.  She was going shopping, eating ice cream out and going to school.  All the things Hannah doesn’t do or can’t do and it absolutely hit that part of my heart that aches all the time but I try so hard to keep hidden.  Hannah doesn’t leave our home except for doctor appointments or treatments.  She can’t go to school or church, we don’t go out to eat and don’t get me started on conversations as our conversations all day long everyday are the same 15 phrases constantly.  I have those brief moments of the things we could do if she was healthy and “typically developed.”  We could get pedicures together, go to church, go out to eat (and actually eat in the restaurant instead of picking dinner up curbside or a drive thru window).  We would be having conversations about all kinds of things and hopefully her system wouldn’t be so messed up and potty times would be quick and she could do it all by herself!  Oh, but then I snap out of the “dream of normalcy” and I come back to reality.

I will be honest, life is hard.  I do good most days, but oh the days that it hits me; it usually hits fast and hard and my heart just aches and cries out for something different.  I love my little girl.  She has changed me completely (and trust me,  I needed that), but some days I just hurt.  Through much prayer, I dig myself out of the pit  (that is what I call it when this happens) and I move on; but sometimes it takes a few days.  I am thankful for the few friends that I have who are walking similar journey’s.  I actually texted one of them in the middle of the movie last night as she popped into my mind while watching it.  Our stories are different (different health issues and disabilities) but I know she “gets me” and I am thankful for a friend that does.  I also know she prays for me and there is no greater thing you can do for someone than to pray for them!  That I can promise!  If you think about it, would you say a little prayer for  me today?  Pray that God puts a new song in my heart quickly and the peace and joy returns.  If you want to comment on my blog with a prayer need, I promise I will pray for you as well…..that is something I can do and it would take and put my focus on others; exactly where it needs to be!

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Until next time…….

Never Forget

I will admit, I woke up angry this morning.  I woke up remembering what today was and then logged onto Facebook and saw all the beautiful tributes to what happened 14 years ago today and my heart broke all over again.  But, in the heartbreak, the anger welled up even more.  The evilness, hatred and horrific acts of the terrorists from that day stirred all that anger up inside of me.  To think those monsters not only thought about doing that on American soil, but acted on it and succeeded in their mission (well at least some of their mission…..let’s not forget the brave, heroic and courageous acts of those on United Airlines Flight 93 that potentially saved the lives of so many by sacrificing their own by keeping the plane from hitting its possible target in Washington DC).   I look back on this day 14 years ago and my heart hurts for America.  What we were and now what we have become.  I hurt for those that were personally affected by the acts of terrorists and the loved ones they lost that day.

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I remember where I was.  I had just returned to work after our honeymoon.  We flew back in on Sunday and I had taken Monday off of work so my first day back was that fateful Tuesday morning.  I was sitting at my desk when the phone rang.  It was Dennis (he still was off from work and was at home).  He asked if I was watching the news.  I said no.  At that time, my boss walked out of his office and had a look on his face of disbelief.  It was at that time everyone in the office stopped working and gathered around the TV screens.  We watched it unfold on TV for the rest of the day.  All I wanted was to get home and be with Dennis.  I remember walking in the door after work that day and Dennis was in front of the TV but he was watching an episode of Andy Griffith.  I asked why and he said, he just couldn’t watch the tragedy anymore.  That evening we sat in silence watching the news; continuing to watch this horrific day play out.  We were numb, sad, angry and scared!

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I can’t believe it has been 14 years.  My heart still aches for those that lost their lives and their families.  Men, women, children all suffered unnecessarily because of hate and evil.  In some ways, innocence was lost that day.  The idea that nothing like that could ever happen on American soil was proved wrong. As Americans though, in the aftermath, we came together.  People turned back to God, they were kinder to each other and our focus was justice for those innocent lives that were lost.  Somehow we have lost that and it makes me sad.  But, I, for one, will never forget;  just as I know many of you never will either!

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Until next time………