Life With Multiple Diagnosis

I haven't blogged in so long.

Life has inserted itself, kids activities, teaching, new waiver programs, field trips, small procedures.
So much... LIFE.

We went from living in a hospital, our family split, states apart. To being home under one roof learning to take care of a fragile baby, teaching him to eat, to sit. Learning new diagnosis every few months, just tallying new things of possibly "cant" to making it work in his own way.

Now we have a courageous, opinionated, full of personality, 7 year old who attends school daily. He makes everyone in the room smile when he walks in. His happiness is contagious.

So why am I writing today?

Why now, out of everything?

I attended Waylons IEP meeting on Tuesday where we went over his strengths, his goals and what he still needs to work on. Im sure this probably seems like I am leading this piece into yet another "how the school failed my son, how they didn't follow his IEP!". But I assure you its not.

Waylons team of teachers, therapists and aides, is truly amazing. They go above and beyond in finding ways to help him with everyday things.

Waylon is a complex kid.

Ive said that so many times that it just feels redundant and im sure like an "excuse" at times.

Tuesday Waylons Special education teacher told me that she feels Waylon will not be a manual writer. I know this doesn't seem like much. Like "okay, he is in first grade. What does this even mean for a 7 year old?". A lot.

Due to Waylon having multiple diagnosis, he had multiple things working against him everyday. Things that other people take for granted. Waylon is struggling. This doesn't mean he isn't intelligent. But he does have a lot working against him. Just looking up at the board then looking down at paper to copy from the board is challenging due to his cortical visual impairment, paired with his Cerebral palsy causing fatigue while he tries to engage many muscles to just SIT in a chair without falling out. He loses his place on his paper and the board and then has to start over, or it takes a long time to complete a task because he is going back and forth, then his brain, eyes and body tires.

Hes falling more behind as the year progresses and the curriculum advances. He then feels discouraged and down on himself because he is understanding his differences and what struggles come with them.

Because of all of this his team has tried out multiple things. Slant board to help him to see what hes writing better to fit within his visual field, light boards, enlarging everything the teacher is handing out or what is hanging on the walls. Enlarging vocab words and books. With all of these things, he is still struggling due to his complexity of diagnosis.

So they are now trying him out with assisted devices like a tablet, where he can zoom in and out on words, pictures etc on his own. He can highlight words to be read out to him when his eyes and brain tire and he mixes up letters due to his CVI.

Im so happy that there are advancements such as this to help him, and the many other children like him. Im ecstatic that he has an amazing team behind him that try their best to help him succeed in his own ways.

But its still a hit.

A hit to my momma heart. Knowing its another struggle.

We knew with many of his diagnosis that he would struggle academically, but no one could tell us just how that would affect him until we got to that bridge. We have seen small things along the way, with added diagnosis, it has helped in getting him interventions in school and the community.

But what we have seen hasn't been definites so to speak, for future, of things he wont be able to do.
I know he has overcome so much. I see it everyday. I am a huge part of why he is where he is.
I see the things that doctors told us he should NOT be able to do, that he does in his own way, everyday.

It doesn't mean, though, that I wont be upset when we hit a road block and have to take another path to make it work for him. I will change course any day if it helps him to progress, succeed and be happy. But it doesn't lesson the blows.

I take those blows with a smile on my face in front of everyone else. Saying to everyone else and my self  " this is okay, we will make it work as we always do. Waylon will do it his way".
But when no one is looking, when the house is quiet with my babies in bed, and my husband is playing video games. I jump in the shower. My safe place, where I can let the warm water help to wash the day away. Where the water running over my face is masking the tears flowing from my eyes.

I remind myself " he is still here! He is fighting, you are fighting. He is doing things no one thought he would!".

And just like any grief, you endure the many steps to find peace. First I am resistant, then I am full of sadness. Another thing he has to fight through. Another NO. Another wall.

Then I get mad. I get mad that its ANOTHER thing. ANOTHER fight and tears. And I get pissed that its something else tacked onto him. Another task at hand.

Why?!?!?!?

Why does it have to be so hard for him?!?!?

Why something else.?!

Then I am upset that hes not JUST a heart kid. Not JUST a kid with cerebral palsy. Not JUST a kid with visual impairment or a major brain injury.

Its hard to fully engage and feel like other parents get it because he has SO many things going on. So much that affects the simplest of things.

I don't want to let his diagnosis be WHO he is, but they are a huge part of him. They all make him who he is due to the struggles he endures because of them. They may not fully negate every part of what he can and cant do, but they are a huge part of it.

I question everyday what his future will be like with all of these diagnosis. What will they mean for his life. We know some of it, we know the health matters that come with it, but there is still so much that we don't know. Like how much it will affect his quality of life. How hard it will make things in the future.

We are constantly on the edge of finding what he cant do and working around it in a way that he CAN do it and participate in his own way.

We would do it over and over again.

But its also exhausting. Mentally and physically.

Its the part less talked about.

When your kid is watching all of these kids skateboarding and he wants to get in on it, but he does well enough to just walk, let alone balance on a board and roll. And you see, the moment, when he realizes the difficulty of this task and his inability to do it the same.

You realize the look of inadequacy wash over his face. You hold back the tears from your shattered heart and you try to redirect him into something he can do.

Its a constant daily struggle. Protecting his heart and mind. I don't need to teach him about "failure" because he sees glimpses of it everyday.


I remind myself daily of the amazing things he does, to try and cross out his cants. I remind HIM of the things he can do, no matter how different he has to do them from other kids. I try to help him to embrace the things he can do.

Today I am looking back at the past few days alone during this Congenital heart defect awareness week and month, at the amazing things happening. The things happening because of him! Because of his struggles and endurance.
Watching his interaction with Kentuckys Governor Andy Beshear on Monday when we were blessed to be at the signing of the proclamation for CHD awareness week.... AMAZING

He walked into the room with such confidence and happiness. I know that I am doing something right by instilling these things into him.

When the sinking depression sneaks back up.

The hyperventilated breaths, the burn in my lungs when I finally let out a long exhale to slow my breathing. I settle, my mind settles. 

I've been here before, far to many times. My mind has taken off, wandering into the dark places. Opening subjects out of my mental file cabinets that I don't like to discus. The room is filled with light, but me, I only see darkness. I instilled all of these bad behaviors in my self as coping mechanisms. By no real choice of my own. Each time I would finally release the mental notes I had been taking for so long, I was shut down. Told "your are wrong", "I don't have time for this". " You brought it on yourself." "just get over it". Or the worst..... silence. 

What if they had listened? What if they had used that moment to really listen, to the real me? Did they know how much courage it took to come to them? Did they know that I had held it in so long before coming to them and I had reached a dangerous breaking point?

Most days I push through, I speak loudly so not to go unnoticed, it also helps to quiet the demons living inside. Maybe if I act like I am coping well they wont see how much of a mess I am. After all I don't want to bother them, it never ends well for me. How lonely  I feel inside even in a room full of people. Honestly though, I seek attention. Hoping that someone will see through the masks I bare. And for once they wont stumble on words before distancing themselves because its to much or they don't want to be bothered. 

Its always been like this though. When I needed someone to be my voice for my tiny self, they left me behind. Minimized, swept the room clean, and under the rug it went.

I wonder what my life would be like if someone had spoken up, took my hand and said " I got you, let me carry your burden". I didn't find that until I found my husband. But even now, I  am not always fully open because he bares such a heavy weight already. 

Often times I am crying, no SCREAMING out for help when it gets so bad, but I've mastered the art of playing the parade of masks on my day to day that it all just seems normal, or "oh, shes just emotional today, shes fine"

Ive been there to many times. And before I reacted with what I found was the only "cure" for the big emotions, the pain. MORE pain. That knife to the skin, the blood leaving my body, pulling me our of my numb space. It made me feel real, alive, human.

I refrain from reverting back because its not an acceptable form of coping. So I taught myself to speak up, speak out. Its not always welcomed though. Who wants to hear they may have hurt your feelings, or hear the sad details of your childhood sexual abuse, the days you spent in the hospital bedside of your tiny child waiting for them to pass because doctors say they have done all they can for them. Most don't want to know these details. I forget that its to much, to detailed for them, and its hard for them to listen to at times.

But its become my saving grace. Speaking up when I get to that drowning point of my depression. When I've been fighting for my breaths for months and my bodies finally to exhausted to fight it any more and I start to be pulled under. I try to catch my second wind just before the water reaches the tip of my nose.

I pull myself out, breathe a deep breath or twenty. Indulge in a hot bath with music, throw myself into housework, training at the gym. Something, ANYTHING to pull myself out and just SURVIVE. 

It scares me though. I wont lie. What if I don't hit that second wind one day when it gets so bad. I fail......

I drown. 

I cant think to hard on it though. I only have now, the fight I have right now. My kids need and deserve it, along with my husband. So I wake up. Fight another day. Smile and push through. Its all I can do. Just breathe. Besides I hate the deep water and I don't want to surrender because I am to damn stubborn. 

"And I know that I can survive. Id walk through fire to save my life. And I want it, I want my life so bad. I'm doing everything I can." (Sia-elastic heart)

To the doctor that urged me to abort my child with a heart defect.

My views on abortion have changed since leading into adulthood and becoming a mother, especially after being faced with decision of bringing a child who would be medically fragile into the world.

While in my college courses years ago we discussed the topic quite often since I was leading into a career into the medical field. I often thought about if I was faced with the decision to abort because my baby had a major medical condition and most likely would not live, especially if it meant the child would have numerous medical procedures. But I had learned over the years that doctors are not always right, and they don't hold a magical book that can determine the exact date of expiration on a life. 

When I walked into your office I was scared, overwhelmed and in medical mode as I watched the tech scan over my plump baby bump. I could see the blood flow was wrong in his tiny heart. But I also felt him roll around and I seen his tiny facial profile.

When you walked in you talked directly to the Ultra sound tech. Saying things like Critical Aortic Stenosis, when you smiled and said "Excuse us for speaking our "doctors jargon", I will explain fully in a minute.". Your face turned to utter surprise when I explained that I already knew what you were talking about, at which time you directed the conversation to me and explained how I was a very observant person to have seen that our 20 week fetus only had three chambers in his tiny heart. 

You went on to explain that you have never seen a case this critical that did NOT turn to a condition called Hypoplastic Left Heart syndrome. That his left side of his heart that was extremely small and barely functioning would end up no longer functioning. That his Aorta was and would continue to become narrow/smaller. At this time we would have a list of options, none of which would be easy. 

We could choose:
*Abortion
*Birth him and then take him home for compassionate care. (no interventions, just watch him waste away and eventually pass away.)
*3 open heart surgeries before age 4
*Heart transplant

Abortion, though, was your main focus. You continued to speak of it. Saying how this life would be hard on him. That it would be extremely hard on our family, as my husband and I were younger and we already had two younger children. You said he would have little to no quality of life. You said we should decided within the next 2 weeks because of his gestation. 

I was pissed, and hurt at such a gesture. Here we were receiving life changing news and you were telling me I could just end it all with a simple decision of ending his life. A child that I had carried now for 20 weeks. I had felt him kick, seen pictures of his little face. There were options to help him sustain life and you just wanted to get rid of him. You gave us no hope, as you said most of these kids don't make it out of the hospital, and most never make it to Kindergarten. 

3 years later I have begun to understand why you stated these things. Why you continued to bring it up, and why you seemed to be angered at the thought of us not choosing it. 
I understand that at your place of work you are faced daily with the faces of grieving parents. Parents you have just told devastating news to. Parents wanting to hold onto their bundle of joy for as long as they can. Consumed with their emotions and "selfishness" of wanting to keep their child alive. Because who wants to face the scary part that most people never experience? I am sure you thought about the tax dollars "going to waste" for a child that wont make it anyways. You were not properly educated on the new technology and interventions that have been keeping children like our son alive now for the past 20 + years.
You were thinking of another young couple taking on to much, and another child being placed in the system because they cannot properly maintain care for such a fragile child.

I understand. 


Your words stick with me daily. 

 When he came out of his first open heart surgery hooked to life support, hanging on the edge of life and death. I seen heartache. 
When I seen his enlarged heart beating through his chest cavity because he was to swollen and unstable for his chest to be closed for 2 weeks. I seen hardship.
When I seen him cry tears but heard no sound because of his breathing tube. I second guessed my decision, just like you did.
When we made the decision to have him moved to a more equipped facility out of state and I was separated from my husband and children for four months. I stood by his side every day.
When I seen him smile for the first time, I seen quality of life in the form of happiness.
I watch him use his walker through our house, as he smiles and yells "I luu you mommy" I hear quality of life and see it with my eyes. 

Though he had and has many daily struggles, he perseveres. He smiles daily, he laughs big belly laughs. He gives the biggest hugs, and makes our family complete. 

You said most of these kids don't make it to Kindergarten, and we have seen that evident many times, sadly. BUT their lives where worth every second. Their smiles will forever be remembered. The memories they made with their parents will also. 

Next week our sweet boy will be starting in the Preschool near our home. I will be handing him off again, but in the best shape he has ever been in. We know the reality of losing him at a moments notice, we have come close many times, but I know we made the best decision for him when we chose to fight. Any second we have or have had with him has been worth it, maybe not always the easiest, but ALWAYS worth it. 

Even with his Critical Congenital Heart defect, mixed with the Hypoxic Ischemic Brain injury that occurred during his first surgery (that caused him to have Cerebral Palsy), he still continues to amaze doctors with his continual progress. 

This type of life isnt everyones best choice, and we understand that. We also understand that it is your duty as a health proffessional to give us all options (even the uneasy ones), but our choice was best for us. I hope that one day you will have the pleasure to meet our sweet boy, and that you can be better acquainted with survival rates of children like him in the near future. 

What they didn't say.

When we were 20 weeks along with our 3rd pregnancy we went in for our normal anatomy scan, or what others associate with the ultra sound to find out the sex of your baby. Whether you were buying blue or pink soft onesies, hair bows or bow ties. 

   But for us, it was a day that changed us forever. 

At our 20 week anatomy scan they couldnt get a good look at babies heart, though I could only see three chambers each time it danced across the screen. We were sent for fetal echo in hopes that it was "nothing" and we were just being overly cautious. We only wish this was the case. 

 Our boy was diagnosed with a Critical Congenital Heart defect. 

We were told MANY things that day.

 Like his left side was extremely small and barely working (his heart that is). 
His Aorta was small and narrrow. 
He may not survive. 
His life would be hard and have little to no quality.
We could choose abortion. Abortion was an option. If we chose abortion it needed to happen somewhat quickly because of his fetal gestation. ETC ETC. (I mentioned this multiple times because it was mentioned multiple times!!). 
This would be a huge change and challenge to our little family with my husband and I being somewhat younger and having two small children already. 
We would have a few options. Abortion, give birth to him and take him home to pass, three open heart surgeries before 3-4 years old, or heart transplant. 
Because we didnt choose abortion this hospital only offered to do the three surgeries or compassionate care/hospice. 
We were told the hospital was great and could handle it. 
He could have multiple developmental delays. 
It could be a rocky course of recovery because every child is different. 
Become accustomed to PICC lines, IV's, heavy narcotics, breathing tubes/machines, Oxygen Saturations, Blood pressure. 
He could pass at anytime, and most of these kids dont make it to school age. 
We would go home with machines, daily phone calls to check weight and Oxygen. 
And so much more. 

There is alot we werent told. Alot we werent prepared for. 

They didnt say that we would learn to wear an array of masks to make it through the day.
They didnt say that we would learn the hospital better than some of the staff. 
They didnt say that while its challenging, we would learn to balance hospital life with home life/time with our other two children.
They never mentioned ECMO (life support) as a possibility. But it happened.
They never mentioned possibility of brain bleed or brain damage occurring that could change his life and make for more challenges.
They didnt say that we could become accustomed to all of this and more.
They didnt say he would make it. 
They didnt say I would sit by his bed and beg for his pain to go away, even if it meant me telling him he could move on past this world if it was to much. 

Out of everything, they didnt say that we would learn to celebrate EVERY bit of progress. That we would learn to juggle better than any circus clown and do it with a smile on our faces most days. 
They never mentioned that we were strong enough for this life. (We still break at times, what parent wouldnt.)
They never said we would learn to love through any pain that came.
They didnt say he would have an infectious smile that could make even the most stone cold person light up.
That he would smile even through his biggest struggles.
That he WOULD start school one day, and the days in the hospital would just seem like a dream at times.

Late night journal entries, saving my mind one at a time.

Often times, late at night, I cant sleep. I feel an extreme urge to write down whats on my mind. 

I guess this urge came from years ago when my therapists gave me a list of ways to cope with my depression and anxiety. It has saved me more than once. Sometimes just jotting down what keeps playing in my mind can help me feel a sense of relief. Like its not just trapped in my head. Its out on paper, and its real, and I can share it with others if I choose. 

The past few days have been hard, I cant pretend they haven't. When its quiet, and I am just staring at my sweet boy playing so innocently in the floor with his toys. His hair swept over to the side and his comfy jammies. And his smile, oh his smile just reaches me in a wave of emotion. This time three years ago Waylon was hooked to a multitude of machines to keep him alive. His body was unstable, he needed a ventilator to breath, an umbilical line to pump him full of meds to keep the hole in his heart open. The only thing truly keeping his heart as stable as it was, was that medication. He was heavily sedated because he just couldn't tolerate sound, light, touch. His numbers would drop dangerously low, which was another reason for the ventilator because he continued to stop breathing. 

Even though this was three years ago, the memory and emotions are still so raw. Looking at him happy makes me happy, and emotional at the same time, because I know what he came from. The struggle and pain he endured to get to this place. 

I have went back to this journal entry often this past few days and felt it was time to share because I feel like others could understand, I get comfort from that. Knowing that I am not alone in this journey with my child is both sad and relieving at the same time. 

Here is my entry from months ago, when I slept no more than 3 hours in a night for 2 weeks.

    I hate the entity called CHD. 
     The dark demon that holds our child's tiny lives in it's hands. 
      Engulfing our entire family into it like a raging fire. 
     Beating down doors, staring you in the face, no where to go. Its not an addict on the street
      you can walk away from and deny.
       It covers you in its "comfort" blanket every day that you have with your warrior, leaving         you wondering "when?" its going to strip them away from you.
       Having you on edge leaving you with vivid nightmares of what could come, and what             others have faced. 
       It takes you down quicker than any storm could and destroys any picture you had of                your child when you first seen that positive on that pregnancy test.
     Its a ROTTEN thing!
    A COWARD, hiding behind deceiving smiles , slow development and failure to thrive               diagnosis.
   The only visible hell left behind is faint scars, blue lips and tiny blue fingers/toes. 
    Scars that are uplifted, used as empowerment. Showing their endearment, their strength,       not their pain. 
     While that entity just tick, tick, ticks away. 
      That bomb waiting to blow.
      Each second precious, but the future feared.
    Will he live???
     Will he beat this????
       We will fight, sutures, scalpel, and doctorates in hand.
      Besides, what else can we do, when the entity has our child in hand and our family held        hostage?
      One things for certain, its all been worth it. 
   Though the seasons change, that will remain the same.
     Its okay to have fear. 
      Its when you become so overly consumed and no longer productive, that you need to re-        evaluate.
    Down times happen. Scary thoughts creep up.
    There is NO manual for this life. 
     I may be scared, but its not defining me. I'm taking it one day, and sometimes minute, at a     time. 
     As long as he is fighting, I am too!! 

All of this so true. I will say it again, this life isn't easy, but it is worth it. He is worth it! 

The Problem With :I wasnt saying it about him. A plea from a special needs mom.

I had contemplated writing this for a while. The words danced in my head daily as I scrolled through my Facebook newsfeed. 

I know for so many this will hit home, and for some it may seem like I am attacking them. This is not my intent, first and foremost. I just want to articulate my families feelings on this subject and help others empathize with us. This isnt towards any ONE person in particular as I see this from friends, family, aquaintences etc. 

Growing up we used certain words to get  point across about how stupid something or someone was, we sometimes used these words to also hurt people. 

Retarded, cripple, limpy, cross eye, slow,etc. 

I hate even typing these words now.
I hate it because my child fits into these ill fitting categories. 

Born with a critical congenital heart defect, our youngest underwent his first open heart surgery at just 7 days old. He came out on life support, and during surgery he had a brain bleed and a Hypoxic ischemic brain injury (he went without adequate oxygen for an unknown amount of time). Because of all of this our Waylon is left with a diagnosis of Hypotonic Cerebral Palsy with Hemiplegia. He has a weak left side due to the brain injury and bleeds, his muscles can be both tight and weak. He didnt feed by mouth until he was a year old because he just couldnt swallow properly and his body was overworked just trying to survive due to his half of a heart. 

Waylon has what appears to be a slight limp due to his weak left side and his muscle being so tight that he has a hard time straightening his leg fully. He requires braces on his ankles and legs to help him properly stand, and a walker to help him to walk. He also has a wondering left eye due to his brain damage, and is quite delayed in all areas. 


Hearing people speak in reference to people like him in such a cruel way is heart breaking. I was brought up that people are people, no matter their color, beliefs or disabilities, but sometimes even my own family  is not aware that their choice of wording about a situation  can sometimes be quite hurtful. 

I have done well to not lash out at people, partially due to the fact that just a couple of years ago I too used the r-word in reference to stupid situations (not people), and because I know that my point will not make it across to people if I run screaming at them. 

I didnt understand how harmful these things were until my son came along, EVEN when they arent in reference to him. 

Making others aware seems like the only solution. There are so many words that are better fitting. 

When we hear people using such words in ill intent about others it only fills us with more anxiety about setting our son free into the world/general public one day. I also know that we cant change everyone, or their process, but we are our sons advocates. He is where he is now because of our advocacy for him. 

If we dont stand up to this, who will?? We need help with it though. WE need others to take a stand, Waylon needs others to! 

As I explained earlier to a family member, the problem with "but I wasnt saying it about him" is that its about people like Waylon. Friends of his, people that are like family in this tight nit community. Its a problem because Waylon will be old enough to understand these words one day, and one day soon he will recognize he is different. He will realize that he has certain factors that hold him back from doing things just like able body and minded people. Though we show him so much love, and show him his strengths daily we know there will be a day that he may feel less than due to his disabilities, and we know that we can not save him from everything. I also know though that if we start now, we start recruiting people to take a stand that we can lessen the blow. 

He will one day understand these words used in reference to people with disabilities like his, and I fear he will become self conscious. His feelings hurt, to think that someone who says they love him, says such cruel words about people like himself. I also put it like this, as a family member if you heard someone say one of these words in reference to him or TO him, would you still feel the same? Would you still be okay with it? Or would you be pissed that someone spoke about or to him in that way? When we speak this way, our children hear it, they carry it on into their daily lives and use it in their daily language. Would you be mad if you heard some child at school called him such a word? Then why is it okay to say about someone else?

Waylon has been through so much, and he struggles daily to do "normal" things. Why cant we take a step to help lessen the blows for him in the future by no longer using these words. When they come to your lips, think of him. His smile, his fight. Help us to end it! 

What does it take. A Journey with Depression, Anxiety disorder and an Eating disorder

I'm going to be vulnerable for a bit and go into some depths I haven't really openly spoken about. 

I've not been one to hide my emotional state for long. I was taught not to as a coping mechanism while in a mental hospital. Yes, you read that right. The inspirational over comer you keep up with has been in a mental hospital. I placed myself there when I was a Jr in High School. 

  I've struggled with depression for as long as I can remember, but I have also dealt with body image issues just as long. 

As a young -thin I might add-girl, I was reminded not to eat to much because "you will get fat". Or told in my teens that I had gained a noticeable amount of weight. When I was at a health weight, the body people would kill for, it was usually because of my eating disorder. Depriving myself of food or eating a small amount then purging it. 

  I was noticed, attention was given, but not exactly what everyone would want. Boys and men objectified me to the point that I felt that's all I could be good for. Mans use. 
I was sexually harassed not only verbally but physically from the time I was 4-5 years old until I became a teen. 

I was constantly trying to please everyone, everyone but myself. I put up with disrespect from those around me just so that I would be surrounded by people. I dumbed myself down and hid in a shell more times than I can count just to satisfy others. But I hated it. i hated myself. My mind went to those scary places. How could I rid myself of this pain. 

   Anxiety attacks took over. Overwhelming feelings and I found that physical pain relieved my mental anguish. So at 16 I began cutting myself. The anxiety attacks would become so bad that they took over my body, harming myself was the only way I could relieve the pain. My body ached, I couldn't breath, until I cut myself. Feeling the pain from the cut and seeing blood run was the only way to relieve the emotional pain at that moment. 

  I hated my body so much that I often thought and talked about cutting off the fat. Yeah, it was that bad. I hated it so much that I starved it and then damaged my throat in the process of releasing food that I felt bad for eating. 

   When I got to the point of thinking of killing myself to relieve the pain I knew it wasn't where I was supposed to be, and I seeked help.

   Psychiatric help helped me. I gained other coping mechanisms to help myself and i gained some control of my body, my mind, and my eating disorder. I was surrounded by REAL people. People who truly gave a damn without ulterior motives. They just loved me. 

    Though i have been off medication for a few years, I STILL struggle daily. I AM stronger than I was 10 years ago, I have had to be. I have three children depending on me. One of which no one else can truly care for the way he needs due to his medical needs.

    I'm NOT the same person I was 3 years ago. I don't look at life the same. I see myself in a different light, and I see so many people around me in a different light. I no longer put myself in the spot to be every ones confidant when they feel the need, their stepping stone. I am no longer here to please others. Only my children, myself and the one man who has stood by me at every low point (my amazing husband). 

   Because of the new me and how hectic our life is, many people have walked away from me. I only have a SMALL hand full of people I can confide in. I am vocal about what goes on in my mind, reaching out for support and love, but still no one comes to the rescue. I guess I have gotten good at hiding the fact that I am truly struggling. Its nothing like it was a few years ago, its new, its different. Its realistic fears and stress from dealing with my sons conditions and the thought of how I CAN lose him. Stress from worrying about getting him to a competent hospital that can continue his life and quality of life, all while dealing with his limitations, day to day life with his siblings and my role as a wife. 

   So many have walked away that I honestly don't even try to open up to another friendship. People I cared deeply for and was close to.

  Recently a close family member tried to commit suicide. I am saddened for them. I know that feeling, what runs through your mind, and that they didn't reach out to get help before leading down that road. I am happy that they didn't succeed. That they can get the help they need to get to a healthy place. I tried to reach out a few times but I don't think it stuck. I feel they were consumed with what is going on in their life right now that maybe they didn't see it, and that's okay. Ive been there when I was in my younger days. Its hard to see everything going on when your mind is locked down in a hard place. 

   But now I sit back and I see how many people ran to this person to check in on them, incorporated them in their plans to bring them through this rough time in their life. While I am so happy for that, they NEEDED it, it just opens my eyes more to who has been there for me recently, in my dark times. Its not many, my husband and a small handful of people. A few amazing heart moms who have called, texted or private messaged me to check in on how I am doing and how things are going, offering up an ear to listen. 

   No one else. It makes me think "What would it take?" What does ti take for people to care? Does it take me going completely down into that dark place where I do begin to think those dark thoughts, trying or succeeding in ending my life for people to give a shit and say how much they care? 

   Then I think maybe those people are no longer needed in my life. Even if they are family and old friends. Which is sad because of how close I used to be to some of them. But it shouldn't take me getting to that point for people to show they care, for them to show up, invite me into outings or a cup of coffee to help me cope with this hard time. While I could really use that, because lets face it I have alot going on, and major decisions to make again. I also want genuine people in my life, not someone who feels obligated to be here because I am in a rough spot. I know I will make it through, but a few good friends who care could be beneficial too. 

   I know in the end I have a few quality people in my life who are there when I need them to be, helping to pick me up when I am enduring the rough spots on this journey called life. For them, I am thankful.