On The Move

     My baby was on the move this week in school.  He was scooting all over the halls in Occupational Therapy using a little jet scooter, which he loved.  Then in Physical Therapy he got to get in a new gait trainer and try it out down the halls and he was finally back up standing tall, making his way down the hallway like a big boy.  He felt so good getting compliments from everybody on how good he was doing.  It's been awhile since he was in any kind of walker because I took the one we were using at home to school and they haven't been using it.  I can tell it was a lot on LJ, but it's time to put that work in and get them legs moving cuz I know my little man wants to be up and about with his classmates as much as possible.  He could not wait to get to the classroom with the gait trainer so that his little girlfriend could see him standing up tall.  It was the cutest thing.  His teacher had to grab her camera and get a picture of it.  I'm so excited to see the progress that he makes.

             

Daily Challenges

Things have been rough lately in more ways than one.  I try to always remind myself that it can not only be worse, but that it was once much worse and that it will get better.   Every day is a chance to be better than the day before and all I can do is give it my best.  I am extremely grateful that LJ is feeling pretty good, despite having a slight cold that's been lingering from school.  I am dealing with each day as it comes and praying for strength along the way.

When I'm no Longer Here

Mother

Exactly!

I have been having a really hard time lately ....just in general.  I Originally started this blog to help myself and anyone else dealing with similar issues, but I have been so neglectful and I am going to get back on track. Being able to let out my feelings and even a little bit of what LJ and I have gone through has been a hug help to me.  I need to be able to let it out so I  am promising to stick with it.  I hope that it is helpful to someone else too... at least a little. 

Summer Fun

Throwbacks

NICU Memories

Day of Rest

Today my baby just needs to rest.  Everything has his little body run down and he has been so tired.  I hate when he's like this.  He already is not at the point where he's able to run around and play like he wishes that he could, so when he is down and out like this it's even more painful to watch.  LJ deals with a lot.  He has been through so much already in his 5 years of life, and he tolerates a lot without complaining, but now, he is hurting, he is struggling and it's killing me. I need m happy baby back.  Lord help us!

Looking Back

I have my days where things are up and down, more down than up I'm not ashamed to say.  Between my own personal struggles and everything going on with LJ, I sometimes have a hard time picking myself up, and that's something I'm working on.  

The last couple of days, I have been reminiscing on things last year, and how much everything has changed.  Some things for the better, and some, not so much.  This time last year, actually, exactly this time last year, I was in the hospital after having multiple grand mal seizures, and I almost lost my life.   LJ also had to go the hospital because while I was having these seizures, he was the only one in the house with me, and I neglected to care for him, so he did got his medication, or his nutrition, which caused him to be severely dehydrated, and in need of his immunosuppressants for the health of his new kidney.  It was BAD!  Thank God my family thought enough to come check on me because I wasn't answering my phone and we were so close that my sisters and I talked everyday.  It had been 2 days.  I get chills every time I think about it.  They said LJ was in shock when they got there.  He was just sitting in the bed silent.  No crying, ...nothing.  The only odd thing is I had been changing his diapers, but nothing else.  After all kinds of tests, MRI's CAT scans, sleep studies, all types of stuff.  The only thing they came up with was that I had PTSD and I have been so stressed out between taking care of LJ by myself, dealing with Josh passing, and never taking time to deal with it all that my body just shut down, and I started having seizures.  It's the craziest thing.  Now, after a year of being on medication, I have not had another one, thank God.  That was really the third time it happened, but the first 2 times, my niece was there and they were very mild and quick, both in my sleep too.  I pray that I have seen the last of them.  I try not to get to stressed, especially since it's still just me and LJ in the house.  I worry so much about my lil man,  I'm all he has, I can't leave him.

Since then, there have been so many stressful things to happen, but I try not to let them get to me.  Family problems, it's like my whole family has fallen apart.  We are so different from how we use to be.  Lord knows, now, if anything were to happen, I could never feel as confident in anyone coming to check on me.  We are not the same anymore.  It should always be family over everything.  That is always the way it has been my entire life, and now that I'm an adult, and have started a family of my own, everything is changed.  Even the few friendships that I thought that were solid in my life have disintegrated.  I am hurt by this, but, my trust for people outside of my family has always been pretty much non existant, so while it does bother me, it doesn't exactly shock me to my core.  Either way, every relationship pretty much in my life has been altered in the past year, and it has taken a toll on me emotionally.  I promise not to let it break me though.  What doesn't kill you only makes you stronger, right!  If I don't know anything, I know that much.  Stay Blessed Everybody, and Love those who love you Back!!

My Heart and Soul

Taking a Toll

It has been weeks now since LJ has been able to go to school.  My baby has been feeling up and down sick, I have been sick.  He's been whiny because his stomach has been bothering him, and it's not much I can do about it, except hold him and try my best to comfort him in my arms, but I know that it doesn't make anything better.  We haven't been out much because the car is in the shop, it just seems like one thing after another.  I want to have this positive outlook on things so that he feeds off of that, but it is so hard to do.  I feel like I'm letting him down in so many ways.  I wish it was so much more that I could do for him, so much that I'm not doing, but I don't know what to do.  My mind is all over the place for so many different reasons.  I am fighting my own battles and I'm trying to keep it all together for my Angel.  Sometimes it all seems to come to a head.  The crazy thing is that it seems like its more now than before.  My stress and anxiety is becoming more frequent.  At one point in time, I was able to handle so much more, and it all seemed so trivial, but then I look back and realize, I had my Bae back then.  He always made everything better.  Everything is so different now, my heart is much more empty now, I'm like half a person.  I feel like I'm running on empty and I just want to fill myself back up.  I have to be whole on my own though.  I have to do this by myself.  Nothing in life is ever guaranteed, and sad as it may be, even if he was here today, there is no guarantee that we would have even still been together.  I would have loved to think so, but life is strange that way.  I just pray to God everyday that he give me the strength to find it in myself to be everything that my son needs me to be, everything that I need to be for myself, because I am struggling out here.  Emotionally, physically, mentally, spiritually, things are taking a toll on me, and I can't let them break me.

Much Needed Inspiration

Today is just one of those days, like many days, where I found myself needing a little bit more of a push to do pretty much everything.  I mean from getting out of bed, to even eating something.  Sometimes, if it wasn't for having to do certain things for LJ, like get his medicine, and his feedings for him things like that, I swear, I would just lay around when I'm feeling like this.  Especially when he's not feeling good.  It just destroys me.  I just have like this empty feeling inside.  I mean, to be honest, the only time I even crack a smile is when he's happy, so when he's not feeling good, everything in my world has a cloud over it.  I try to find some kind of inspiration, some words of encouragement to get me going, to help me feel a little bit like a person so I don't go insane in this house though.  Listening to music usually keeps me calm, but right now, I am on a mission to figure out what my go to is going to be to keep myself focused while I am trying to get back to work.  I just need to find a happy place for myself.

Love Lost... Flashbacks

On this Throwback Thursday, I'm just here taking a trip down memory lane, looking at pics of happier times just like I do pretty much every other day.  I just figured I would share some with all of y'all today.   It's so funny how things were so rough back then, but it didn't seem like anything at all.  We were happy to be together, Josh and I had our beautiful baby boy and we were just doing our best to keep him as healthy as possible while we prayed for a kidney to come along.  He was a blessing, he was exactly what  I waited my whole life for.  Everything was perfect, and then, all of a sudden, it just wasn't anymore.  I just wish I could go back to those days.  All I can say is never pass up the chance to tell the people that you care about how much you love them.

I Feel for Him

My poor baby, well, not so much of a baby anymore, but he'll always be my baby.  He is still dealing with a cold that both of us have been passing back and forth since before Christmas, and this stomach bug that he;s had for basically a whole entire year now.  I feel so bad for him.  All I can do is my best to take care of him as his mother, but as his mother, I just want to take it all away.   If I could go through it all for him I would.  The cold though, I basically am, lol, since we are pretty much sharing it.  I'm actually drinking tea with apple cider vinegar and honey right now.  Seriously though, I hate to see him suffering.  It's like, aside from everything else that he has to deal with in his tiny little body, all his other struggles, I just wonder, why can't he ever catch a break.  It brings tears to my eyes when I watch him playing because he is such a happy little boy despite everything that he goes through.  I wish that he could just have somewhat of a normal kind of childhood.  I wish he could run around and play with his friends at school.  I wish he could play on the jungle gym.  At this point, I just wish he could go to school regularly.  I would give anything if I could play around the house with my son, and he could get up and walk to do whatever he wanted without having to ask me to carry him back and forth.  There are just so many little things that add up to so much, so many little things that you, or I take for granted, that my 5 year old son only dreams about.  Things that he sees children smaller than him doing, and I see the sadness in his face that he is stuck in a wheelchair, or a stroller, and they have that freedom.  Then being sick all the time on top of that.  It breaks my heart.  I have to get him back to school for therapy, I have to help him work on the things that we can change.  I want so much more for him, he wants so much more.  My heart aches.

Can't Get Over You

Personal Challenges

This past year has brought many challenges for me, not only as a mother, but as a women in general.  I have been having a very hard time dealing with the loss of LJ's Dad.  With him getting older, especially looking just like Josh, things have seemed to get harder, and the realization of raising him on my own is taking a toll on me.  People always ask me why don't I try to move on and date again, but it's just not that simple for me.  I am a package deal.  Any man that approaches me has to accept the fact that I have a child with medical issues, and I am not really ready for anyone to be judgmental or nervous about his needs. Besides the fact that I, myself, just don't really feel ready.  I always tend to think back and compare, for lack of a better word, to my relationship with my Fiance.  I know that is not the healthiest thing for a new relationship, but that's just where I am still.  I am kind of stuck right now, and I am having a very hard time letting him go.  I miss him so much each and every day, and it eats me up inside.  I keep hoping that one day I 'll wake up and I'll feel a little better, that things will be a little easier, but it just doesn't, or just hasn't seemed to change.  Maybe sometime soon, I may have a different outlook on things, or be a little more open.  To be honest, I definitely have my days when I wish that I had somebody to hold me, but at the same time, the person that I want will never be there.  I am not ready to just fill the void.  It has to be a real love, and I guess I won't be ready for that until I can fully accept the fact that the man I love is gone forever.  Even Though it has been over 4 years, it still hasn't completely sunk in yet, as funny as it may sound to some.  One day though, if it is meant to be, I'm not going to rush it, I can be alone for now.  I'm dealing with a lot.

New Year....Same Challenges!

After we slid off the runway

It has been such a long time since my last post.  Thank you to everybody that continues to follow our journey, I hope we haven't lost you :) .  Things have been so hectic over the last couple of months.  LJ has been still dealing with his ongoing tummy trouble, which have plagued us for about an entire year now.  We have discussed so many option with his doctors, but haven't reached a final decision as to how to finally tackle this once and for all yet.  My poor baby has been in and out of school, missing therapies and all.  He of course, continues to be a trooper, but it is nerve racking to say the very least.  After the scope, and all the samples they have taking, I was expecting to have gotten to the bottom of this, yet here we are, still in the same place.   At this point, LJ hasn't gone back to school since before Christmas break.   We were in the hospital for a week before Christmas, both of us, with strep throat.  We had gotten sick from being in the blistering cold trying to fly to Boston Children's for an appointment.  Unfortunately, our plan slid off the runway during take off with us in it, which was terrifying.  During that ordeal when we had to be transferred from the plane to the fire truck, we were out in the freezing cold.  That's how we ended up sick.  Never a dull moment I swear it.

My biggest concern right now is that LJ get to a place where he is well enough to return to school because he actually likes it and he misses his friends.  He needs to get his therapies as well, physical therapy being the most important to me because I am so worried about him working on his legs and staying mobile,  I guess all I can do as of now is try my best to see what can be offered to him at home, which I have already contacted the director at the school.  As always, I will say a prayer, and take a deep breath cuz we gotta keep on pushing.  Happy New Year Everybody!!

My baby on Christmas