The Garden part 1

You never get over the loss of a child. As a parent watching my daughter grieve her baby girl I feel like I not only lost sweet Emberly my granddaughter, I lost MY daughter too. She will never be the same.

There is such a feeling of hopelessness when you can’t stop your child’s pain. Our children will always be just that, our children.

I will never stop wanting to comfort her, protect her, fight for her or advocate for her.

It can be exhausting, frustrating time consuming. It can wear on your own soul.

At times, I have struggled with my own depression. It is not the same as having major depressive disorder. I have periods of depression. I do not need medication, I am functional. But there have been days I felt like I could not get out of bed, felt lost and hopeless.  Many nights I cried myself to sleep, silently…alone.

Emberly passed November 1, 2015. In January 2016, still deep into raw grief I was standing in the kitchen looking outside over the deck into our bare burning bushes. I felt empty, tears streaming down my face. I cried out to God. “Why!?” After a few minutes I begged Him for a sign. “Please Emberly if you are out there, if you can hear me, send grandma a sign!” Immediately there was nothing. No sign. I wept harder, and anger towards God welled up in me. The tears stopped as my anger grew.

I began to busy myself with dishes and chores around the house. This happens to be one of my coping mechanisms. Later, I glanced out the window again and there they were in the bushes. Cardinals, a male and a female. My heart leaped with joy. We never fed the birds, I had never noticed or so much as paid attention to birds. But these beauties stopped me in my tracks. There it was, a sign.

You don’t have to believe in the sign that gave me hope. It was for me. You can call me crazy, say it was a coincidence, it very well may be. But I took it as a sign, it was my moment with God and Emberly and that is what mattered that day.

I watched them bouncing through the bushes, grabbed my camera and took some pictures. I felt a little smile, a little hope. They didn’t stay long, but I wanted those cardinals to come back, and so the bird feeding began.

I began to research backyard bird feeding. Best location for placing feeders, what kind of food to attract a variety of birds, but most importantly the cardinals.  I wanted them to feel safe and welcome in our backyard.  Soon after the feeders went up, I was impatient watching the feeders hoping the birds would come. It took 5 or 6 days but they came. The cardinals came, the blue jay, housefinches, chickadees, titmouse, sparrows, goldfinch, juncos, woodpeckers, hummingbirds and even ducks!

 

 

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I grabbed binoculars and my coffee and would sit by the window for hours. I continued to read about backyard feeding and spring of 2016 we broke ground for Emberly’s garden. My husband and stepson dug out a small pond that Easter and my therapy, my healing began.

As always thanks for reading , be gentle, be kind. Remember I’m just a mom. Please like, share and comment.

 

 

 

 

Hurt so bad, so sad

Why does it hurt so bad,
Why do I feel so sad?

All my hopes and dreams crash
Like in a fire burning fast

Each day I grab the rope,
With little left I have of hope.

I keep trying, pushing and prayin
In a daze feels like mayhem

Want to stop the chaos, can’t make it
Madness all around can’t take it

Looking, searching for the light
Look to my left then to the right

Which way do I turn, when will I learn
Pursue thy self and life you yearn.

Like the potter’s clay reformed,
Can I too, be reborn?

Broken pieces scattered all around
Love, peace and hope to be found?

Heart longs to feel comfort and console
Yet nothing soothes my empty soul.

Why does it hurt so bad,
Why do I feel so sad?

I own my tears

I own my tears
Created over the years
Grief and sorrow
Not to borrow
I own my tears

Heart pain is real
The loneliness I feel
Lost in the crowd
The laughter so loud
I own my tears

I brought pain to myself
Bottled it up on a shelf
Expressed not the truth
Because it was not couth
I own my tears

Fight myself to stay alive
Self pity will not drive
Love the answer will all seek
Push myself through the weak
I own my tears

I own my tears
Created over the years
Grief and sorrow
Not to borrow
I own my tears

By Sandra Samay

What Depression, Anxiety, PTSD, Chronic Pain and Grief stole

My previous blogs have been pretty heavy. Sadly, so is our reality. In sharing such a dark topic, I decided to include some happier thoughts and photos in order to enlighten readers of the affects of mental health disorders and what it has robbed my daughter, myself and my family of.

Amanda’s depression has evolved, there have been various circumstances and traumatic events in her life that have exacerbated her symptoms.

My daughter is beautiful, compassionate, empathetic, friendly, generous, intuitive, passionate, sympathetic and courageous. She has a wonderful sense of humor and loves animals, music, dancing, amusement parks and football. She participated in volleyball, basketball, track, cheerleading and was on the homecoming court in high school. As I reflect, there were signs of social anxiety pretty early on, but I thought it was typical social pressure.

 

Amanda loves to make others laugh, she hates to see others feel sadness or pain. Likely, because she identifies with it. She is a good listener and a loyal friend.

 

Amanda had hopes and dreams of working with animals, she loved her job at the veterinary hospital and she had hoped to work with exotic animals one day.

 

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Major Depressive Disorder is different from Depression. Most of us have experienced depression during a low point in our lives. When things turn around we come out of it. Clinical Depression is different, it is a constant and persistent state of hopelessness and is different for each individual. It is a chemical imbalance in the brain compounded by circumstances and life events.

I learned the word comordity as an occupational therapy assistant student. I remember crying in class because as I was learning how to work with mental health patients and I was recognizing even more of what was going on with my daughter. Comordity is the presence of 2 or more chronic illnesses at once. Such as depression and anxiety, or depression and substance abuse. Later, we would also learn about PTSD, Chronic Pain, Grief and Fibromyalgia. (Actually still learning).

Before Emberly passed away it seemed like there were more good days than bad. Life presented us with many challenges but she was stable enough to care for herself, work and at least manage somewhat of a normal life. Now however, it seems the bad days are more than the good. She requires assistance with basic life tasks such as laundry, dishes, cooking and even sometimes self care. We pray for good days and take advantage of them when they come.

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Please do not judge anyone with chronic illness when those good days come. If they are blessed with a good day and able to smile or laugh or possibly do a little light housework, let them enjoy those moments. Please do not take it upon yourself to decide they are “fine” or “exaggerating”. Take it for it is, a good day. Let them have it. We have to do better as a society to break the stigma. We need to embrace people and show them compassion and understanding. We can not draw conclusions or form opinions on someone elses journey by comparing it to our own. We do not know where they have been or what they have been through.

Mental Illness is NOT a choice. Who would wake up and decide to be so sad and overwhelmed? Who would decide to have all of society judging and criticizing them daily? They are very aware they are depressed, they are aware of their dependence on others. Who would choose to spend so much time in the hospital answering questions over and over about your emotional and physical pain reliving it every single time!?

Mental Illness has stolen my daughter’s joy, her smile, her athleticism, hope in becoming a veterinary assistant, her independence. It has robbed her mother of sharing her blessings and proud moments like the ones I get to watch the rest of my friends share.

Depression and chronic pain go hand in hand, as the mental illness has gotten worse, so has her physical pain. I hate seeing her in pain, I hate not being able to stop it. I hate that doctor’s haven’t been able to regulate her medication because it took 14 years for someone to do a DNA study to determine her meds weren’t working! I hate that when we call various inpatient treatment centers unless she is having a psychotic episode she doesn’t qualify or her insurance won’t pay for services. Do you know what it costs to go to an inpatient treatment center? $10,000 per month and they require a 4 month commitment! So $40,000 out of pocket to get my daughter the help she needs and wants. This journey is not easy. I do not have the answers, but dear God I wish I did!

She is my daughter and I want what is best for her. Doesn’t every parent want that for their children?

The system is frustrating beyond belief. Mental Healthcare is poor. And society is cruel. She and many other people with mental illness need us all to do better! She is my daughter and I love her beyond words and I will continue to hold the lantern for her, and fight for her.

As always thanks for reading,  be gentle, I’m not a professional,  just a mom.

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Angel Emberly Part II

November 1, 2015 I was awakened by a nurse coming into the room to check on Amanda.  Labor was progressing and it was time to get the doctor.  She was administered the epidural.  Labor was a rollercoaster ride of emotions.  The usual excitement of childbirth already overshadowed by death.  How do you even breathe?

I noticed hives on Amandas back,  I had seen those before as she has many allergies.  I brought it to the nurses attention.  I struggle to remember now if it was the epidural or something else they gave her.  Then her blood pressure dropped dangerously low and she almost passed out.  They administered benadryl through the IV.  Her vital signs were not stable.  For a minute as I watched the monitors I was worried and in disbelief watching the doctors and nurses scramble to get her stabilized.  It was scary “please God, Emberly is gone, don’t take my baby too.” I prayed.  I kept my eyes on her occasionally glancing at the doctor.  He seemed confident the situation was under control, he didn’t ask those of us in the room to leave, so the rational part of my brain was telling me it was going to be ok.

She was stabilized and things calmed down a bit then it was time for her to push.  I can’t explain what it felt like to watch your daughter going through something so tragic.  Here she was a young mother who had carried her baby girl for 9 months, just to say hello and goodbye.  She was so brave.  She did everything they told her. With every push knowing,  the end result.

They allowed some family members to stay in the room with us, and I am so glad because if it was just the two of us, I don’t know if I could have done it alone.  My sisters and niece were there.  They encouraged her to keep pushing.  She was crowning it won’t be long now just a few more big pushes baby girl.  You can do this!

She was working so hard, her final few pushes and Emberly Dionne Rumer was born sleeping at 8:30 am.  I saw the cord wrapped around her little neck two times.  That was it,  the reason she died, the cord.  There was no cry,  no first breath,  no congratulations, no balloons this was not a celebration.  It was a funeral.  No one should ever have to experience this.

After a few minutes I felt so overwhelmed with emotions and I had to get out of the room for some air and to breakdown.  I couldn’t be strong anymore and I didn’t want Amanda to see me.  As soon as I closed the door behind me,  I collapsed on the floor weeping.  “God, WHY?!”  As I wept, my sister Linette a grieving mother herself consoled me. “I know”, she said and that is all she had to say.  She did know.

A bereavement nurse took over from here.  She was an Angel.  She assisted with the arrangements.  She took Emberly and brought her back to us in a beautiful gown and blanket made by volunteers for situations like this.  She took Emberly’s footprints, arranged for the photographer and priest,  told us how to hold Emberly and keep her bundled.  We had so many decisions to make, our minds incapable of making a decision, my daughter relying on me to guide her through.  I tried so hard to let her decide what was best for her.

A photographer from Now I Lay Me Down to Sleep came.  She was also amazing handling Emberly and us with tender care.  As you are in the room taking photographs with such a heavy heart, you don’t smile, you don’t pose the camera is just capturing raw emotion.  It is the most awkward feeling to have someone there for such a solemn occasion.  But you know these will be the only pictures you will ever have of that precious Angel, so you want them.

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After the photographer left we were allowed to just have some time with Emberly, everyone who wanted to hold her did.  Amanda was exhausted and holding Emberly and fell asleep.  Family and friends gathered in the room next to her.  I went to check on her and quietly opened the door to see her sleeping holding her Angel.  Overwhelmed with grief and sadness, but somehow seeing her lying there sleeping  for a moment, there was peace.

Later a priest came and said a blessing over us all and baptized her.  Everyone was preparing to leave and gave their condolences, then it was just us.

Later the bereavement nurse informed us the time had come to say our final goodbye. We wept and wept.  It was surreal.  All the preparation and planning, the excitement and anticipation had come to this one moment.  Goodbye.  The ache in our hearts will neve fade.  There are no words I can say to make her pain stop.  I have nothing as a mother to offer her except to be there.  My daughter had just become my hero.  Only the strong survive.  Fly High baby girl. Fly high.

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As always, thanks for reading be gentle, I’m just a mom.  Please subscribe, like and share my blog.

Angel Emberly PART 1

Behind our smiles, there are tears.  Through laughter there is sorrow.  Joy is short lived and clouded by darkness.  We cling to hope but our faith is shaken and weak. We march on because we have to, but we have no idea where we are going.  We are lost souls wandering through darkness.  We pray for the light to come in the dark lonely night….but it doesn’t.  Anxiety and fear follow us in the shadows, we are exhausted and weary but live to see another day and we pray the new day is better than the last.

Early 2015 things were spinning out of control.  Amanda was in a bad place.  Her car broke down, she lost her job,  every day it seemed like she was calling me to fix something that had gone wrong.   I felt like I could not handle one more thing.

One early morning she wasn’t feeling well and her roommate had taken her to the hospital.  A few hours later,  the phone rings,  I see it is Amanda and pick up the call.  “Mom, are you sitting down?”  My heart sank with worry and anxiety.  “I’m pregnant.”  Stunned,  I reacted shamefully.  I hung up on her!  I didn’t know what else to do.  I was filled with shock, rage, fear.

So many thoughts were running through my mind as I paced through the house.  I was thinking  “well this is great! you have no job, no car, your roommate is about to kick you out AND you’re pregnant.  Fantastic!!  You can’t take care of yourself!  A baby…are you kidding me?”  It took time for me to process it all.   I am  not proud of how I handled the news.  She was scared and alone and I had abandoned her.

A few days later I picked up the phone and called her,  “Are you ok?”  “No” she replied.  We had a painful conversation about choices.  We had decisions to make.

After much thought and discussion we decided she would stay at a group home, a  place for unwed mothers.  It was a program to assist them getting back on their feet so they were able to care for the children when they were born.

It was a hard decision, painful to drop your daughter off with a suitcase,  a few dollars and count on the kindness of strangers.  But, we felt it was best for her to be involved in this program.   As I watched her walk away from the car as we said goodbye, tears streaming down my face, I was deeply saddened, yet hopeful.

She had a job at a maternity store and was saving her money for an apartment.  She was going to church every Sunday and growing into motherhood.  She was glowing and the healthiest and happiest I had seen her in years!  Perhaps this unplanned pregnancy wasn’t so bad after all.  I was so proud of her and as her precious bump grew, our love for Emberly grew. What a blessing!

 

Our hearts were full of hope and excitement.  She was working the program at the Hanna Home, she had saved enough money for her first apartment, the place she and Emberly would call home.  What a change I had seen in her.  The day she walked into the rental office to pay her deposit my eyes were filled with tears but this time it was different, they were happy tears.

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We had her baby shower,  and decorated the bedroom and nursery.  The crib was up, the diaper and hospital bags packed and ready.  Nine months of excitement and anticipation. The outpouring from family friends at her baby shower, was something I will never forget.  Everyone knew this pregnancy was unplanned and she was to be a single mom but this little Angel was loved and welcomed by all.

 

The last month of her pregnancy there were several trips to the emergency room, she had pretty bad headaches, her blood pressure was occasionally high, she was increasingly uncomfortable (as expected) and some false labor.  We were always reassured, little Emberly was just fine.

October 30, 2015 we went to her final follow up appointment.  She was uncomfortable and her blood pressure was elevated.  She mentioned to the nurse, Emberly had frequent hiccups,  her back and hip had started to bother her and she had to quit working a few weeks prior.  She asked about being induced, but they didn’t feel it was necessary.  They sent her to labor and delivery due to the elevated blood pressure and kept her for a few hours.  I had to leave for work so I told her to call my husband to pick her up later.

After being monitored for a few hours, some rest and lying on her side, her blood pressure was stable and she was again reassured Emberly was fine and she was sent home. (no songogram)

She came to our home that evening.  We had a fun and relaxing night.  We ordered a pizza and baked peanut butter cookies.  After eating, she mentioned that she hadn’t felt Emberly kicking after dinner and usually after sugary treats Emberly was active.  I reassured her, we were at the doctor and hospital that day,  the doctors said she was fine.  I mentioned she was probably running out of room to move or napping in preparation for the big day.  She stayed the night in the room I had prepared for babysitting my new grandchild.

October 31, 2015 she texted from the basement.  She was having contractions. We called the doctor and she had also mentioned she hadn’t felt the baby move since yesterday.  The doctor instructed her to get to the hospital.

We grabbed her bags and off we went.  Was she in labor for real this time?  Was something wrong?

I pushed her in a wheelchair as she was having a hard time walking,  she was checked in and the nurse came in to place the heart monitor.  Our hearts sank, as the nurse struggled to find Emberlys heart beat. “Where do they normally place the monitor?” she asked. “right there…” Amanda replied as her eyes filled with worry and tears.  I reassured her once again, relax….It’s going to be ok.

The words, you don’t want to hear at this point from the nurse,  “I’m going to get the doctor.”  The doctor arrives, quickly greets us and immediately uses the sonogram monitor,  as he is rolling the wand over her belly,  I watch his face, his body language.  I look at the monitor which is placed right on Emberly’s heart. There is no blood flowing, no beating.  Nothing!! He utters the words, “I’m sorry…there is no heart beat.”

We cry out “no, no!”  What? this has to be a mistake! We just saw you yesterday! Everything was fine! How can this be?  What happened!?”  We are now in complete shock!  We are both screaming and crying out in anguish,  “No, no, no… God why?  WHY?!?”

The next few minutes as we cry and are in a complete panic,  we began making random desperate phone calls.  My husband, my mother, Amanda’s father, my sisters and some close friends.  We are in a complete state of confusion, and those that answered our calls were shocked and confused as well.  It’s so hard for me to even write this, my thoughts are almost as confused now, as they were then.  It’s hard to remember the sequence of events from here.   The nurses and doctor explain what happens next and we are forced to make decisions no parent or grandparent should ever have to make.

Do you want an autopsy? Do you want to be induced or go home until labor progresses?  You will go through natural childbirth, no C section.  We will send some grief support in, we can get a photographer so you can have pictures of your baby.  We will give you some time to decide….

We are in a fog.  Shock, disbelief,  and the most gutwrenching pain any human will ever experience.  Amanda is transported to a different wing of the labor and delivery floor.  We are provided an extra room for family and friends to gather.

Our day of joy is now a day of mourning.  Our visitors will come not to celebrate but to offer condolences.  We now have to decide if we want to have a funeral for our sweet Emberly.  She will never come home with us.

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God Bless, thanks for reading and sharing our journey.  I’m not a professional, just a mom, be gentle.  Please remember to share, like and comment.

Mothering a Daughter with Depression part II

In the previous blog I introduced you to my daughter Amanda, her diagnosis of major depressive disorder and gave you a little background.  I shared mostly about her and how difficult it has been to watch my once happy, funny, athletic, beautiful daughter slip into the dark world of depression.

Originally, this post was going to be about a different topic. However, I have decided to open up about myself and how I have responded, reacted and finally accepted her diagnosis.

The truth is I haven’t always ” held the lantern”.  It hurts me to say that, but it’s true. I realize in confessing some of my secret thoughts, feelings and reactions may subject me to criticism and judgement but that’s ok.  If I don’t speak the truth, then what am I actually doing to help others? It’s the reason I am sharing in the first place.

Initially, when she was 14 and I really started to see things that concerned me, I thought I was being proactive.  I tried to open up the communication between us, be more available to her as a parent. But it wasn’t working. My 14 year old daughter was talking about dying and she was cutting herself.  She wore long sleeve shirts to cover the marks on her arms.

When I first discovered the cuts on her arms, I freaked out!  I grabbed her aggressively, “What the hell are you doing to yourself? What is so bad in your life?!”  I honestly didn’t know what to do. This wasn’t some teenage phase of isolation and hating her parents. This wasn’t hanging out with some kids that were a bad influence.  This was real and I had to take action.

I called the psychiatrist and a psychologist and scheduled the appointment.  I remember sitting in some of those appointments tears streaming down her face and I,  for the life of me couldn’t figure out what was so damn bad? Make no mistake, I believed she felt sad, her feelings were real, but were they worthy of cutting yourself? Enough to make her want to die? WHY? 

The psychologist worked with her on some techniques to stop the cutting. She was to wear a rubber band around her wrist and when she felt like cutting she was to snap the rubber band. That technique was not successful I learned soon enough.

I thought things were improving after she had been on medication for a while. She did spend less time in her room, started hanging with her friends again. I was feeling positive and hopeful. Then one day she was in the bathroom taking a shower, playing her music, but she was in there for a long time.  I became concerned and knocked on the door… ” are you ok?”  She wasn’t ok. She was cutting again. This time her groin and thighs. I was concerned, frustrated and angry. Why wasn’t this medication and counseling working?

We were in a dark place. I had a hard time focusing at work, I resigned from the church choir. I needed to spend more time at home.  Sometimes I did well, I hugged her and reassured her I loved her. Other times I was  frustrated, scared, worried and I lashed out. I was afraid to leave her, afraid to let her go to school. Do I quit my job?

With time the medication did seem to be working so I would let my guard down, begin to trust her and we would slip back into more of a normal routine. Then BAM out of nowhere something else would happen. I struggled to recognize if I was dealing with depression or rebellion. She was a teenager after all.

During counseling sessions we would try to outline some boundaries, establish rules, improve communication and consistency.  We had success and failures. We had screaming matches, physical confrontations and many tears over the years.

I hate depression! It’s unpredictable. I need my life to have some control damnit and I can not control this! I can’t make my daughter feel happy, I can’t calm her fears, I can’t rationalize with her. I’m a communicator, I talk. I talk a lot… and I am usually pretty good at it. I can usually say things that will calm someones fears, reassure them. But depression is a liar, so whatever you say, depression is already telling them something else.  If I say “your beautiful”,  it tells her she is not beautiful. If I say ” I love you”, it says how can anyone love you? If I say “everything will work out”, it says something bad is going to happen. It’s the nature of the beast.  I am also stubborn, so when the depression manifests and she replies with the lies it is telling her, I argue, she argues and things can escalate.

Over the years I have done things I regret. It is very frustrating to feel like you are working so hard at something and make little to no progress.  It’s a cycle, it goes on and on and on. 1 step forward 3 steps back. A glimmer of hope, then darkness looms.  Dealing with depression can bring out the worst in a person. And I am being honest, it has brought out the worst in me.

Depression robs you of normalcy,  it steals your joy and catches you off guard. When it strikes, you want to lash back at it and unfortunately the recipient is usually your loved one.  So, this cycle of things that happen like difficulty dealing with basic tasks, feeling overwhelmed, addiction, unable to sustain employment, chronic pain and other symptoms DEPRESSION causes but I have reacted towards my daughter.  I am angry with depression, not her.  I’m frustrated with depression and the cycle, not her.  But I lash out at her.  Does that make sense?

One day she called me while on her lunch break. She was having a really rough day something had triggered her emotions and she couldn’t stop thinking about her daughter Emberly dying.  I kept telling her she had to pull herself together and get back to work. “Amanda you can’t miss work! You have to get back there, you can’t lose this job!” Meanwhile she is collapsed on the floor of her apartment sobbing.  I wish I had been more compassionate in that moment.  I panicked, I thought I could say something that would snap her out of it.  I knew how much she loved this job and I knew her employers patience had to be running thin since she had missed due to hospitalizations previously. It’s not that I didn’t feel sad too. When she cries about Emberly it is the worst feeling in the world. I feel helpless, because there is nothing I can say to make that pain stop.  I knew she was in a bad place emotionally. I myself have had emotional triggers when at work. But I am able to cry, go wash my face, take a deep breath and regulate those emotions. She is not capable of that, but I expected her to respond the way that I would.

Depression is a very hard disability to accept. To us, the person appears to be healthy so we expect healthy “normal” behaviors and lifestyles. This makes it more difficult for the person affected by depression because our expectation is that they will respond similar to how we would respond in any given situation. When that is not the case and we lack understanding it creates frustration and anxiety because they feel we just don’t understand them.  The truth is we don’t.  We don’t know how their mind works, why they can’t regulate their emotions, why they can’t get out of bed, why they feel hopeless and tired.

I have been tired, disappointed, discouraged, sad, frustrated and angry.  It should be no surprise to me that others in her life feel that way too.  However,  I am her mom so there is that unconditional love that always pulls us through. When other family members and friends react with some of those same feelings, it hurts her and it hurts me too. She has had friends that have removed themselves from her life, because they can’t take it.  She frequently cancels outings, she has a negative outlook on life.  This is also part of our dark,  lonely journey,  ISOLATION.  We walk much of this journey alone because of this darkness, because of the negativity.

In recent years, mostly since Emberly died I have a better understanding of her world.  God knows I am trying with all my might to keep my daughter alive, to bring her hope and have a better understanding of what a challenge life really is for her.  I hope those who know her can reach this understanding too.

Be gentle, be kind… carry the lantern and shed some light into someones dark world.

God Bless, thanks for reading.  Remember, I’m not a professional, just a mom. Please remember to LIKE, SHARE and FOLLOW my blogs. 💞