New Year, Same ME!

As we get ready to ring in 2016, I, a most people do, have been reflecting on my year.  There have been some really tough times, but there have been some fantastic ones too, like LJ starting Pre-K :).
I don't plan to change much in the new year, I do hope to be a better form of myself, and just better in general.  Same me, just improved, everyday, slow and steady.  My only wish, my deepest aspiration is to be any, and everything that my son needs.  I want to continue to advocate for him, and to push him to be the best he can be as well.  I am molding a man, and I want him to be an amazing, intelligent, caring, and thoughtful one.  Despite his disability, and all of his obstacles, LJ continues to exceed everyone's expectations, day in, and day out.  I just ask God to gives us both the strength to keep fighting this fight together.

I hope that you all have a very blessed New Year's, and please Stay Safe Everyone!

 

Wow

Today I saw something that blew my mind.  I have been trying so hard for the past year and some change, to find a way for my son to gt around, and be able to do the things that he cannot do because he can't walk.  LJ has had physical therapy from the time he was just a baby, but when we went to Boston, MA for his transplant for 3 months, everything stopped, and it was almost a year before he got therapy again.  Not to mention the fact that even though he was getting physical therapy when he was a baby, his therapists never did any actual work with him because they were afraid of his dialysis catheter that use to hang from his side.  It was understandable because I was extremely cautious of it as well.  This cautiousness though, came at my baby's expense, and he has yet to learn to walk.  H spent so much time in hospital beds, and just beds in general because he was getting such long dialysis treatments as a baby.   Thank God that we are past that very traumatizing time in our lives.  Now, we can focus on making my baby happy, and focusing on him being able to do things that he wants to do, but may lack the ability to at this point.

In saying all that, I have to tell you guys what I saw on ABCNews.  It brought actual tears to my eyes.  It is a device that a mom designed to help her son who is unable to walk, get around.  It's called an Upsee, and I swear, it is amazing.  I am already a strong supporter, and I haven't even tried it yet.  I just know it will be perfect.  The design is doing the same thing that I do everyday.  I walk with my son in front of me.  He's always like "Mommy, I wanna walk" , and that is how we do it.  i hold him under his arms, and he walks in front of me.  I always worry that I am putting a strain on his arms though, like pulling them too hard.  This would be the perfect solution, just strap the harness to my waist, it goes over his head like a vest (this is what I'm assuming from the pics), and he has the straps for his feet to be strapped on top of mine.  Then when I walk, he walks, and both of our hands would be free.  That is perfect!!!   If there is anyone out there like me, who has been struggling with this issue, I think this might be our answer.  Here is the link to the article from ABCNews.  It is set o become available for sale in April for $540.  I know that's a lot of money, but honestly I would pay it in a heartbeat, and i am saving for it now.

I hope this made someone's day, because it really mad mine :) 

My Big Boy

                                   

LJ lost his first tooth today.  I am so.... I don't even know how I feel.  I'm excited, nervous, and happy all at the same time.  I was so scared when it happened 'cause it just fell out his mouth while we were playing on the bed.  He was talking, and it rolled out, root and all.  I started screaming, and LJ looked at me like "Mom, are you OK?"  He wasn't even bothered a little by it.  He actually thought it was funny.   My baby is getting so big so fast.  I just want to press pause so that I could enjoy this time.  It's like he was just a baby yesterday, now he's losing teeth, going to school, doing big things.  Where did the time go?  Everybody told me that it was gonna fly by, but I had no idea.  I still remember driving up to the hospital to visit him in the NICU every day.  He is my world.  Sometimes I get caught up in all the medical stuff, and forget that my baby is really growing up.  I love his whole entire life.  My little man xoxoxoxo.

Of course I got a picture for y'all.  LJ didn't want to show his missing tooth, but he did show some duck lips :)

My baby givin' those cute duck lips

LJ's present from the Tooth Fairy

Just a Tip for my Moms

Since it is the Holiday season, I have been so obsessed with Christmas smells, and just good smelling things in general.  I love the gingerbread, and sugar cookie smells.  I have all kinds of candles, and wax melts to make it smell so delicious in here.

Lately though, I keep getting asked what do I do to keep it smelling so fresh in my house aside from all the holiday stuff.  Now, as a mother, I can be the first to tell you, there are so many ways to get a little stinky smell lingering in the house without you even realizing it.  From diapers, to puke, and so many other things, it can get crazy.

I used to buy a lot of Febreze all the time to keep it fresh around here.....NEVER AGAIN!

I found a little tip online that inspired me to tweek it a little for my situation.  I have a recipe to make your own Fabric/Air freshening spray.  The best part about it, saving money.  You wont have to buy that expensive Febreze anymore, and this spray with last ALOT longer.

OK, all you will need is:

• An empty spray bottle ( I use my 800 ml Febreze bottle :)) 
• Container of Downy Unstopables ( I bought the 13.2 oz bottle fresh scent )
• Hot water

FYI:  A bottle of the Downy Unstopables can make several big bottles of freshener, at least 5 depending on your preference.

Now, I took 2 cap fulls of the Downy Unstopables, and funneled it into the Febreze bottles.  Then I filled the bottles basically to the top with hot water.

You want to let the mixture sit for about 15 minutes to allow the little pellets to melt.

After 15 minutes, SHAKE WELL, and ENJOY!!!!!

You want to be sure not to spray like crazy because the smell is strong, and a little goes a long way.  This is truly one of the best things I have ever came across.  I LOVE THIS!!!

Feel free to make any adjustments for your self, but I thought this would be an awesome tip to share with you all, because if you are anything like me, you love a fresh smelling home, all year long.

PS:  You can thank me later, lol.  :) 

Happy Days

I hope everyone is having a great day.  I am in wonderful spirits right now.  My son is truly the only person who can put such a huge smile on my face, and he did it today.  Now, my little man has been going to Pre-school for about 2 months so far.  He only goes Tuesdays and Thursdays, but it's such a big step from just being at home with me.  Every time I drop him off, there is some resistance as far as staying, and not wanting to be around the other children.  Today though, this magnificent day, was not like the others.  On the way there, he was actually telling me "Hurry Mom, I got to get to school."  WHAT!!!  I was in shock, but I hurried and got him there.  I figured he was just being the little funny man that he is, and it would be different once we actually got there.  To my surprise, yet again  though, it was different when we got there.  LJ came in bouncing in my arms, and just as jolly as he wanted to be.  He did get a little frowny faced, but asked his teacher to take him to the library so he could show me where he likes to play when he has therapy (physical, occupational, and speech).  On our way to the library, we passed the front door, and my baby told me I had to go out that door.  He said, " you have to go Mom.  You can come get me later."  My eyes welled up before I could even open my mouth.  I am sooooo proud of my baby.  He is getting so big, and mature.  He gave me a kiss, and I left, crying the whole way home.  Not just because of him growing up, but it hurts so bad that his Dad can't see this.  This is what makes all the hard times worth it.  My baby, my big boy, my heart,  my LIFE!!!!  What a great way to start my day, now it's time to wrap some presents before he gets home :)   

Have a Blessed, and Amazing Day!!!!!

Dear Diary

    Today I decided to do a little something different.  Instead of posting about LJ (right now), I am just going to take some time out to really get my feelings out.  I have a lot that I carry around on my shoulders, and I need to start letting it out.  I will always continue to work hard at being the best mother that I can be, but right now...... I need some ME time!........ So here goes....

     So "Diary", today is my older sister's annual ornament exchange party.  Usually I am so excited, but not this year.  There has been so much going on within our family, that things will never be the same.  It's so sad to say because I am ALL about family.  I don't even really have no friends like that because I would so much rather be with my sisters.  I am the youngest of 8 children (5 girls, 3 boys) so we are, or were all very close.  I won't even get into all the craziness that has gone on, but I'm sure anyone with sisters can relate.  My thing is though, when you fight within a family, you have to understand that it impacts everybody, not just you directly.  My heart is so heavy from the arguing and fighting, and it's not even me.   I wish we could just get things off our chest and move on, but Lord knows it's not that easy.  It's so sad that this is happening, then around the holidays make it worse.  This is Family time!  I don't even know what I am going to do for Christmas without my whole fam together.  That's not even the worst part of it all.

     I am struggling so hard today, ......like most days.  My fiance not being here is really taking a toll on me this season.  The holidays, or really the winter in general, is hard for me.  This year though, my pain has transformed into fear.  I find myself being scared of life, and living.  I fear moving on without him.  It has been over 3 years now, but still feels like yesterday.  I know everybody says that time heals all wounds, but that is not true.  Time allows wounds to become permanent, at least in my experience.  Every morning when I wake up, just seeing the sun makes me cry.  The thought of a new day without him makes me sick to my stomach.  Every night I tell myself I'm strong for making it another day, then every day I curse the dawn.  I never thought it would take so much effort to just be OK.  I am working on it so very diligently, I swear, but it's a lot harder than most people think.  Unless you have lost the love of your life, you cannot relate, or give advice.  You know, to be honest, I really feel like I lost a lot of so called friends after Josh passed because people just didn't want to deal.  It was like I had a virus they thought they would catch.  It's funny though, you always find out who is really riding for you when times get hard.  I found out that the person that rode the hardest was gone.  That's the art that hurts the most.  I lost so many people when I lost Josh.  I lost my best friend, my love, my biggest supporter, and just my everything.  My son lost his father, and he will never know how amazing he was; how babd he prayed for LJ, and how happy he was when he was born.  I still remember when I told him I was pregnant, we were driving to his Dad's house,  and he screamed so loud.  He was so happy he kept asking if I was serious.  From that moment on, it was all about the baby :)  They never got to do all the things he always talked about doing with LJ.  My baby was so small when they took Josh from us.  It's so unfair.  I am really having a moment, and it seem like it wants to stay.  I had to get this off my chest, at least a little.  I don't have anybody to talk to when I gotta get stuff off, so maybe someone out there is listening,

Have a blessed rest of your weekend!

Rough Day

Here is a post I wrote on 11/19.  One of the roughest days of the year so far for me:


Today has been such a struggle for me.  It's Josh's 31st birthday, well it would have been.  This year has been extra hard for me.  I swear, time has not been on my side.  I know that I can't expect to be better by a certain time, or nothing like that, but Lord have mercy...this is killing me.  I have been feeling terrible.  I miss my Bae so much.  It hurts so bad still.  I would've at least thought I would be able to deal with today a little better by now.  This is the fourth birthday that I spent without him.  I still hear his voice, and see his smile when i close my eyes, and I pray those things never change.  He was my everything; my best friend, my love, the father of my son.....everything.  There is not one single day that goes by that I don't think of him.  I will love that man Forever and a Day!!!

I love you with all my heart Joshua.  Happy Birthday Bae xoxox

So Much to catch up on!

     Hey Everybody!  I hope that everyone is doing amazing this holiday season.  It has been a while since I last posted, and there has been a lot going on.  There's been medication adjustments, and so many new experiences at preschool.  I had some things going on personally too, but I am back, and ready to catch y'all up to speed.

     Well, as far as LJ's medicines, there have been a bunch of changes over the past few weeks.  There was a change in the dosing of his Progaf (immunosuppressant) again to start with.  My baby is also  tapering off of Prednisone (steroid), and has started taking a new medicine called Rapamune.  This is another type of immunossupressant that should hopefully agree with his system more than the last medicine.  He's been doing well with it so far, my little warrior.

     My Noonie has been going to preschool, and doing so good, I'm so proud of him.  He's making new friends, it's such a big step for him.  I love it!!!!  He comes home so excited, with so much to talk about.  My baby is getting so big, so fast.  Of course I have pictures of my love.  I wouldn't be me if I didn't have at least a couple pics.....
   

Here is my Angel at school waiting for me to pick him up.   No tears all day!

This is another one sent to me by the Occupational Therapist.  My baby had fun playing in the mini ball pit, and asked her to send me this pic.  Gotta love it!