Fumbling though the tv stand I was trying to find something when suddenly out of the blue a small unfamiliar small notepad fell on the floor. I didn't know where it came from, it fell open on a ripped note page, and in a strange scratchy hand writing I read, ...love you (next line) ..hank you for all you do. I can tell the corner where it was ripped, but from the book it- self, the word, "I" is missing, and the T from word Thank you. Only reading..."I love you. Thank you for all you do."
It had been what I was confirming for a long time, and what brought tears to my eyes. Somehow I knew my son was letting me know that he heard me and what he was trying to tell me during his dying hours; It was what I needed to know...to hear from him. I wept knowing now that even if he could not talk at the moment that he will some how communicate to me. I needed to hear this- it gave me comfort & peace.
I am still trying to move into this place I'm staying at, its taking longer than expected simply because I don't have the help I thought I would. As I stood between the bed & television, I looked at the shelf - it held something more precious to me than anything else. A shelf with photos of Tim and I. The lovely memory Christmas tree that a wonderful mom had made for me and then there is the can of Tomato soup, skittles and dumdum lollipop sitting in front of my son's urn. I leaned over on to the bed, kneeling as I slowly crawled to the shelf. Grabbing the cold urn, I held it close to me, embracing it, holding it tight loving it as if he was right here -hugging him, kissing it and then rubbing the top, the lid, as if I was rubbing his head. Tears trickle down my face.
I missed him so much.
It had now been eight months since I watched his last breaths. I seem to can't get it out of my head, the moments he was leaving me. Feeling sick as I thought of it. Feeling awfully sad- a terrible loss of a wonderful, sweet, humble, honest young man. One who was intelligent, loyal, happy. The expression of his face as he would share topics with me. His eye brows rising, the twinkle in his eyes, the pleasant smile.
This terrible disease had robbed me of my only child, my son. Taken him from me-forever. I no longer can his hear pleasant voice, hear his chuckling laugh, wipe the tears from his eyes, see his pain through his eyes.
I held the Urn tighter as I expressed..."I miss you so much Tim. I love you"
You never know how much the pain of a child loss until they are gone. No good-byes. No last "I love you". No "I will miss you " - gone in his sleep in the early mornings as he had laid there suffering from sepsis, double pneumonia and congestive heart failure. His body had swelled so much due to so much fluids they were given him, that his heart could not pump it fast enough.
The evening before the physicians had told us he most likely will not survive the night. During this whole last few days as his body was struggling, his mind had been fully alert, even if the swellen was preventing him from talking, I still made sure he knew everything that was going on. I had always been open honest with him. No bull talk. He deserved to know and make the choices he needed to make on his own.
Every day I would talk to him as he would spell the words to me as he tried to communicate with me. I would sit next to him, holding his hands when he would sleep. I still had an open wound due to my surgery the month before. I was shock due to this, that I had not attract sepsis myself.
My body was tired, I was fighting to stay awake on Friday night. I tried to stay up to watch t.v. with him. I knew he was sleeping, so around five (5) am I went to lay down, my biggest mistake ever. I was so exhausted. My mind had shut down. I had told Timothy for years whenever he was in MICU to fight...Fight this illness. Fight this disease. More so the last few days. I knew he did not want to die. He had dreams yet to fulfill. But yet I myself, knowing what was going on could not stay awake. My brain had really shut down. I needed to stay up for him, to be with him when He needed me the most.
Although I knew his body was giving up, his mind would not. I had told him that although I knew his mind was full alert, his body was now giving up. His body was now so ill, he just wants to give up. I told him if he really wanted to live, he had to fight for this. Fight to live. I can tell by the look in his eyes with tears, the years that he wanted so much to live on. He wanted to go home. Right there and then, I should had taken him home...be where was comfortable, be with his pets, be in his own bed. Look out his window.
Pastor Dan and some of the elders from the church had been there several hours earlier, praying with him, talking with him and even playing guess what word by using the chart. He laughed. I wanted to make sure he understood that I rather him to go knowing there is a God then to die believing there is no God and later to find out there was. I wanted to make sure his heart was with God, at peace with God. He needed that assurance in his own mind, in his own heart.
I don't think I was asleep no more than an hour when I was awaken by noise. I jumped up in pain, the room was full of people. This was it. Tim's heart had stopped. This was the CPR he wished for. He believed that the CPR would bring him back. But for years we would tell him that the CPR may do more damage than good. But he had it in his mind that he would come back alright. I stood there as they performed the CPR. I knew then his ribs were broken and lungs punctured when the blood came pouring out of his trach, mouth and nose. The nurses and doctors insist that I leave the room, but I refused to. I needed to be there for Timothy. I needed him to know I was right there, not away from him. Finally after what seem like a minute or two, there was a pause.
I had just told the physician, if he crashes again, please let him go. This is not a way for him to be. It was now dawn, I began to learn more I learned he had no gag as they tested him (but he was so swollen) and his one pupil did react and the left eye was looking upward. It was apparent he had a stroke. I
I began to photograph everything, including Tim that morning. His body condition, his eyes. I placed the headphones on his ears, letting him listen to his music, Linken Park and Evanances. I could tell by the monitor as the hours went by that he was leaving me. This caused me to become pacey, anxious, sad. I would hold his hand talk to him, pray with him, and let his music sing to him (I would had killed him if I had sang).
They say the last thing that goes as you pass is your hearing. That statement kept repeating inside my head from my step mom...I wanted to make sure he heard his favorites. I would keep looking into his eyes...telling him to please make sure your heart is at peace with God.
I had jokingly told him in the pass that if I didn't see him in heaven, I would go dive into hell just to kick his ass.
As the monitor began to show his vitals fall, I would talk into his ear, let him know that it was ok to go with God, be at peace with him. I would tell him over n' over that I loved him and would miss him so much As I realized how much he was definitely about to die, they allowed me to crawl into bed with him, I wrapped my arms around him, as he breathed his last breath in my arms. The doctor came in and saw the monitor. He was gone. He apologize for my loss as he turned off the ventilator. I had to say my last good-bye at that moment.
My son was now gone. He had just left this earth eternally. He remained in my arms for the next hour, and then my sister showed. By then it was to late. To late to say her good byes.
The day before, I had kept trying to call my sister and nephew in Orlando. No one would answer their phones. I become angrier and angrier. Tim was seriously dying and it seem their work was more important than Timothy. The morning after his CPR, I later learned my sister called to verified this, like I was lying to her. This made me angry. Why would I make up something like that? So when she said she was on the way, it seem like she took forever to show. Like hours. I kept texting her his stats as the stats were dropping; that when he passed, and I chose not tell her by phone since I knew she was driving (only less 2 hrs away).. Because no one believed me. Because they chose not believe me when I told them he would not survive.
A disease robbed my son's life. Just as God was restoring my life from cancer, my son was taken from me by this disease. This disease is a killer. No cure. It robs lives faster than they are diagnosed with it. They say one (1) of every 3500 boys. I think it is far more than that is diagnosed and far more than 3500. That is just my thought. All I know it is senseless taking lives away.
I often lay in my bed, embracing Tim's urn as I weep the terrible loss of my son. It is hard to believe that he is gone. I am constantly want to go tell him things, its like all the time, always on my mind.
Although Tim passed from complications of Duchenne Muscular Dystrophy (DMD), I still believe they gave him way to much fluids that his heart could not pump to cause his body to fail. Its a wonder why the kidneys and everything failed on him. it was to much to handle. The extreme fluids caused his body to swell, he couldn't swallow (we thought it was the meds from his allergic reaction to certain meds), he ho
About a year earlier the ICU doctors told us that if he got sick again, to let him stay home and die. I was so angry that they would tell me this. I mentioned this to a nurse. She had heard them say this too. I was like who are they to play God. If God wants him gone, He will take him. But if he gets sick, I am bringing him back for healing. His pulomunologist stood near by when this doctor said this. I put this doctor in his place. He had no right to tell me this. I told his cardiologist this as well and he was upset about this. My sister and I have reasons to believe that these physicians (which by the way is the same doctor who told me this) may have taken Tim's life. Hence why so much fluids knowing that the body can't handle it. its only a suspicious.
**** Warning Discretion Advise****
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| Timothy's body swelled so much by Friday night, you can see it in his tongue after the CPR | . |
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| His body continue to swell the hours after his CPR, even his tongue hung out... |
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| You can see even in his eyes, lips, tongue had swelled. He lost his ability to talk, hear and swallow. |
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| through this picture, his right eye, the little you can see, spoke to you. |
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| Tim blew up like a balloon - you can see his tongue about ready to ... |
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| Tim's right arm swelled so much that this is when we thought it was broken on Friday morning. |
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| His toes/fingers turned blue right before his death. |
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| By Tim's death, this is how much his body had swelled (I think he suffocated) |
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| Tim laid after we bathed him 90 minutes after his death. |
(And for the record, they told us due to his condition at the funeral home that we could not have an open coffin...however by the funeral, Tim looked like himself, normal again. All the fluid had flushed out via his trach and/or gtube. )
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| Tim at his funeral- looking more like Tim. |
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| The Tim I look at every day on my phone & computer monitor |
So what caused Tim's body to swell so much...why so much fluid was given to him? The Cardiologist told us his heart was ok...so what happened in that short time that suddenly his heart was no longer able to pump? Was Timothy deteriorating faster than expected or were we not told the truth from the beginning. Are YOU researching your son's heath deeper than just the doctor's word? Should you trust your doctor?
All questions that you be asking to keep your son & family safe.
One thing I have learned as I read my doctor notes, there are so many inaccuracies....
....to be continue on part 2
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