A grandfather’s love

“Yet I still belong to you, you hold my right hand” PSALM 73:23
Today i decided to give my father a very special and meaningful gift. 
I drove to his house early afternoon and he was so excited to see me. As I handed him this very special gift, he was already smiling, wondering what it could be. 
Finally it was open.. An 8X10 picture in a beautiful frame of Rueben and him holding hands while in the hospital. 
His bottom lip quivered and tears begin rolling down his cheeks. He held the gift to his heart, took a deep breath and said “I love him so much.”
For those of you that have seen Rueben’s documentary, you may have noticed a scene in which Rueben and my father are holding hands. 
When my son had his first convulsive seizure in the emergency room, my father thought we lost him, we all did. 
But God had bigger plans for my son and he was given a second chance. 
The moment in the documentary when Rueben and my dad are holding hands represents the first time Rueben was revived after we lost him. 
That moment means so much to all of us, but for my father it means so much more. 
I’ve always known how much my father loves his grandchildren, but today… Today I witnessed the love only a grandfather knows. 

 

Keep fighting

This evening I sat with rueben and we talked about all the people we have met and how encephalitis has impacted so many… 
My son tells me this morning he woke up to the beginning stages of a seizure, an aura. He describes it as very intense and could already feel his mouth shaking. As he lye in bed, so scared of losing himself again, he thought to himself “No, this will not happen, I will not let it”. Then he sat up and continued to think that way. 
Some seizure affects did occur, the aura, his mouth shaking and some numbness. But the full seizure did not happen. 
What I picked up from this is that he was scared, so scared he didn’t want to move, but he did. He refused to be afraid and chose to not allow this seizure to control him today. 
Is it possible that is strong willed mind stopped the seizure? Honestly, I will never know, no one will. But it’s the fact that he refused to lye down and be afraid that means everything… 
Keep fighting son, keep fighting 

 

We will overcome

Everyday is a battle for my son, so he puts on his armor of courage, faith and motivation and goes to war. 

He starts every morning thanking God for the day and hopes to have no seizures. He is strong, faithful, hopeful and happy. 

He has taught us to never take our time together for granted, to say I love you, goodnight and never go to bed angry. 

After nearly losing his life, he was given a second chance. A second chance to live, to love, to have faith, to trust in God, to raise awareness and to inspire others. 

God has a purpose for Rueben and with the help of his family, his story is now out for all to see. 

Please help us in spreading awareness and inspiring others by watching my son’s documentary and sharing it with others. 

  

Inspiration

We all need inspiration in our lives… Sometimes we are faced with obstacles we fear there is no way of overcoming. 

In watching my son battle encephalitis, I have learned that finding positives in negatives is a must. 

From being in a hospital bed unable to talk, see, hear, eat, walk or do anything to being almost back to if not better than where he once was, it’s amazing. 

My son hopes to raise awareness and inspire others. Please take 15 minutes to watch this inspiring documentary. If it’s inspiration you need, you will find it here. 

 

It’s the simple things…

It’s the simple things in life that matter the most. Today I attended my daughter’s orchestra recitle. After my daughter’s amazing performance, I walked outside to wait for her. On a bench right outside the door, my oldest son sat with his baby brother. 

I watched him toss his baby brother in the air about five times and noticed a huge smile on his face. It’s been weeks since I’ve been able to see a smile from him that big. 

I had to take a step back from my surroundings and just breath in that moment. For once he wasn’t thinking about the stressors in his life. 

No stress from school, no stress from his seizure condition.. He was lost in a moment of happiness. It brought tears to my eyes seeing him so happy, even if it was only for a moment. 

Today I was able to be lost in a moment too. I was lost in a moment of happiness that my three amazing children brought to me. Nothing or no one could take my moment from me. 

You see, it’s the simple things in life that can bring us much joy. Embrace them like no other, hold on tight and do your best to never let go. It is those simple things that can make everything that is  bad disappear, even if it is only a moment.  

 

Hide the pain

Earlier this morning, my husband and I were saying how happy we were that Rueben hadn’t had a seizure in days. 

Then, we heard that noise. That god awful noise you never want to hear from your child. He was gasping for air. We ran to his room to find him having a seizure. Body shaking, crooked mouth, gasping for air…seizure. 

My husband ran out of the room to call Rueben’s neurologist and I had my hand on his heart. As Rueben slowly came out of the seizure, my husband and I stood full of emotions that we knew we couldn’t show. 

Then he did it, he took that breath of air. That sound made me feel like I won the lottery. Finally the seizure was over. 

Watching your child suffer this way is the worse feeling a parent could ever feel. I had to  remind my son of all the positive things he has in life and not to worry about these seizures. That soon they would be gone for good. Then I smile, hug him and tell him I love him. 

When he is asleep, my husband and I cry. We hurt for him, we are angry that he is going through this and we are tired of not being able to do anything about it. As we continue our conversation, my husbands reminds me to control my emotions. If I show sadness, Rueben will see it and think something is wrong. 

Hiding the pain is hard. It takes a toll on me but I know we must do this in order to help our son. 

Dear son-our love for you is more then you will ever know. We admire your strength and are proud of you for all you do. Never lose faith and always remember that God has plans for you. 
– mom & dad 

Dear son, 

As I sit here holding you in my arms,  I can’t even imagine the pain you feel. 

To be in a deep sleep and be woken up by an uncontrollable feeling in your arm that ends with a seizure… It must be the scariest thing in the world. 

Then to have to recover and have to put everything you love on hold for two days only to have another seizure and be where you were two days prior… It must be frustrating son. 

Watching you suffer and knowing I can only hold your hand.. It’s the most heart breaking feeling ever. My dear son, I am scared with you, I am frustrated with you and I am pissed off with you. 

You see my son, you are not in alone in this battle you fight. You have me and a whole group of others who have put on our armour and are prepared for battle. 

We are standing in front of you, next to you, and behind you. 

We will never give up and this demon we call encephalitis, it will lose son. It will lose because you are strong. It will lose because you are brave. It will lose because you will never give up. 

I am proud of you, my son. I love you, my son. Soon this will end and you will be able to do everything you love again without fear. 

Everyday you inspire me to be a better person. You have taught me that nothing in this world is more important than family. 

You will overcome. 

Rueben’s emotional battle with encephalitis

I’m sure everyone who is a parent would be in agreement with me in saying there is nothing worse than watching your child suffer. 

I’ve shared a couple blogs about my son, Rueben. He was diagnosed with encephalitis in September 2014. 

Since then he has had many ups and downs but always stays strong and as positive as he can. 

Now for a dose of reality- he is a 15 year old teenager who can’t enjoy what a normal -15 year old teenager does. Clarification… He loves basketball, it’s the one sport that he was cleared to play and he is so passionate about it. 

When Rueben has seizures, he is held back because it takes his body 24-48 hours to recover. He loses his balance/coordination, has speech issues, stomach pain, body pain and as anyone would be is so frustrated. In addition to this, his medication changes when he has seizures. The doses may be lowered, raised or like last week, another one is added. 

The medication makes him feel so out of it that he needs help getting out of bed. 

So he hurts, he hurts mentally, he hurts emotionally, he hurts physically and sometimes he hurts spiritually. He gets angry, he cries, he prays and he wonders. He wonders why him and if this awful thing we call encephalitis will ever go away. Will he ever be able to enjoy what he loves without setbacks? 

It kills me watching him hurt. We talk about it but it doesn’t take away the fact that #1 I truly can’t relate to what he is going through and #2 I can’t take it from him. 

Rueben is the most inspiring and motivating person I know. Being his mother is such a blessing-it’s an honor. He is so strong and I know he will overcome… It’s just going to take time and patience, right? 

Rueben telling his side of the story

Tell me your name/age/grade? 

My name is Rueben Singleterry, I’m 15 and in September of 2014, I was diagnosed with encephalitis. 

What happened?

I don’t know really. I was real sick and went from a doctor thinking I had a virus on Labor Day to two days later having strep. Then on a Saturday around 3am, I didn’t know it, no one did at that time but I started having seizures. 

I went from being excited about high school and sports to lying in a hospital bed and not knowing what was going on. 

At one point, I just told myself that I was going to die and my family, my mom, everyone was hiding the truth.  I remember waking up not even realizing it had been four days that I was in the pediatric intensive care unit. 

What did the doctor say? What was the diagnosis? 

After four days, I was diagnosed with encephalitis.

What is encephalitis? 

It’s a virus that attacks your spine  and moves towards the brain. It causes inflammation to the brain and can be detrimental if one is not hospitalized. This virus is what caused me to have seizures. 

I couldn’t walk, talk, hear right… I couldn’t  bathe myself, I couldn’t even go to the bathroom by myself. It felt like slowly everything I once had was being taken away from me. All I had was my faith, my God, and the support of those that love me. Everything I ever worked so hard for was gone, everything I thought was important all of a sudden wasn’t. 

How long did it last?

I was in the hospital for 11 days- intensive care unit for 10 of the 11 days. Today is April 6, 2015 and I still have symptoms, I still have seizures. I am sitting in a hospital bed as we speak with an ivy of heavy doses of seizure prevention medication running through my veins. 

What do you know about seizures Rueben?

I know there is nothing worse. October 27th, I started having seizures again but this time I was alert for the whole thing. 

What did you experience? 

Death. My life flashed before my eyes, I was suffocating in my own body and nothing or no one could help me. I have learned that as fast as life is given to you, it can be taken and I’ve come to appreciate even the smallest glass of tap water. 

My eyes are open to what matters in life and what doesn’t. 

How are you handling things now? 

My family keeps me strong, my friends keep my strong, basketball keeps me strong, but most importantly- my God keeps me strong. I’m finally back in school and beginning to live a somewhat normal life again.  I also started basketball training again. My trainer has been a blessing in my life too. 

I’m still healing… Mentally, physically, emotionally and spiritually… But it’s getting better. I have a promising future and I have chosen life. I refuse to allow this virus to win, so I fight this battle for my life.. Everyday. 

We all have obstacles that we face but it’s important that we stand strong to face them and never give up. God gave me a second chance in life for a reason and I plan on spending the rest of my life figuring out what that reason is. 

Rueben’s Story

My son was so excited about his freshman year. I remember him trying on about 20 different outfits in preparation for his first day. In addition to that, he is an athlete. He was a slot receiver and played strong safety-starting positions. Soon he would find out that he would never play football again. 

He went to school for the first four days, played his first high school football game then came home to get ready and visit with his grandparents from out of state. He had a great weekend overall. 

Finally it was Sunday and towards the evening, he begin to feel sick. Thankfully Labor Day was around the corner so there was no school on Monday- perfect recover day, right? 

When Monday came, my son’s symptoms begin to worsen. My husband started monitoring his fever and by around 800pm we decided to take him to the emergency room. There we were told our son had a virus and it needed to run its course.  

Tuesday came, then Wednesday. By Wednesday we decided to take him to his pediatrician where he was diagnosed with strep throat. I remember thinking “whew, so glad we know what’s going on!”

As Thursday approached, our son begin to feel a little bit better. I started feeling some relief and figured the antibiotics given to him were working… Then Friday came around and he felt worse. I decided to call the pediatrician and was told the antibiotics needed more time to take affect, but not to worry. 

Saturday was here… It was 300am and as I sat up nursing my then two month old baby, I heard the most awful, bone chilling noise… It was coming from our son’s room. 

My husband jumped up and ran to check on our son who became scared and was unable to recognize my husband. Shortly after,  he moved to the living room and rolled into fetal position on the couch. My husband yelled for me. I ran to the living room and remember feeling so scared. Our son then jumped up and begin stepping away from me. He was trying to speak but the only word I could make out was “scared.” 

I kept telling him “it’s mommy, son it’s mommy and it’s ok.” Finally he crawled back into fetal position on the couch while holding my hand saying “momma, mom, mom.”

My husband immediately called 911. The paramedics arrived and did an evaluation. We were told our son may be dehydrated and to go ahead and take him to the emergency room. So I went ahead and did that. My husband stayed behind with our baby and daughter so I called my parents to meet me at the hospital. 

Around 645am, I left to come home and nurse. My father called me by 730am… I still remember his exact words “Look mija, I’m not going to say much over the phone but you need to get back here pretty quick. Your brother is already on his way to stay with the baby and cici (our daughter) and Drew (my husband) is on his way.”

I remember feeling like I couldn’t breath at that moment. I had to tell myself to stay calm. I begin crying… I was so afraid of what could be happening. 

My husband and I walked into the emergency room where our son was. His room was empty and my parents approached us in tears. My husband and I were told that Rueben (our son) had a very severe seizure and he was wheeled off for an MRI and CAT scan. My parents thought he was dying… I sat down, took a deep breath and begin praying… How could our perfectly healthy 14 year old (at that time) son be having seizures. 

When our son was brought back into the room, he was not himself. He was in a deep sleep and running a high fever. The emergency room doctor placed him on about three antibiotics and informed us he would be moved to a hospital that specializes in neurology. They didn’t know what was going on yet but had to make sure they treat him for everything that it could be. 

We arrived at the other hospital by ambulance and were placed in their pediatric intensive care unit and in a private room. At that point our son begin having convulsive seizures almost every hour. We were pulled out of the room. A neurologist came to talk to us, an intensivest came to talk to us and a doctor from the center for infectious disease came to talk to us. 

As they asked us questions, we could barely answer. We were watching our son who was in pain have seizure after seizure knowing there was absolutely nothing we could do. We were helpless. 

What the hell was going on? Where we losing our son? Why was this happening? I just wanted to hold him and tell him it would all be ok. 

My son stayed in the pediatric intensive care unit for 11 days. During that time he was diagnosed with viral encephalitis. 

Encephalitis is acute inflammation (swelling up) of the brain resulting either from a viral infection or when the body’s own immune system mistakenly attacks brain tissue. The most common cause is a viral infection. In medicine acute means it comes on abruptly; of abrupt onset, develops rapidly, and usually requires urgent care. Encephalitis occurs 1 in every 1,000 cases of measles.

According to the CDC (Centers for Disease Control and Prevention), USA, encephalitis occurs in approximately 0.5 in every 1000,000 individuals, most of them children, elderly people and individuals with weakened immune systems. So it is very rare. The NHS (National Health Service)NHS, UK places the figure at 1.5 cases per 100,000 people. Health authorities suspect incidence is higher than official figures because many cases go unreported when symptoms are mild. Encephalitis generally begins with fever and headache but the symptoms rapidly worsen and can include seizures, confusion, hallucinations, drowsiness and comas. 

 While the virus almost claimed our son’s life twice, Our son was blessed. He did not fall into a coma and the seizure prevention medication he took helped. 

It was the most scariest feeling, things I have ever gone through. Watching your child suffer from pain that can’t be controlled is awful. It’s heartbreaking. I couldn’t bare the thought of losing him. 

He is now 15 years old, with great physical therapy, supportive friends and family, seizure prevention medicine and God… Our son is expected to make a full recovery. Football is something he can never play again, but he won’t let that get him down. Don’t get me wrong… He takes nine seizure prevention pills a day and the journey is far from being over but the outcome is looking very promising. It’s been almost a year now and everyday I look at him I just know God has great plans for him, he is a walking miracle. 

Our son is working with family to get his story out to help raise awareness and motivate others. He wants everyone out there to know that no matter what the obstacle may be, you too can overcome. 

What I want everyone to remember is this- Life is too beautiful to dwell on negative. As my son’s story proves, life can be taken away at anytime. It is a gift, not a burden. Love each other, forgive each other and enjoy every second of life because nobody knows what tomorrow will bring.