chiari angel

chiari angel

Wednesday, May 7, 2014

Bucket....

When I was thinking of a title for this post I thought of the last word my son said to me before another tonic clonic seizure shook his body and rendered him brain dead. I was sleeping on my cot beside Ryan's hospital bed as I had done night after night never leaving his side. It had gotton to a point that he would get extremely upset even if I went into the restroom that was only a few feet away from him . I did everything I could to stay in his eyesight or at least earshot  to reassure him I was still there. August 10th at 5:30 am I awoke to him moaning. Jumping up from my cot in a panic I could tell this was a different kind of sound coming from my child and something I can never forget. It haunts my dreams. A deep death rattle. He managed to say 'Bucket' and I knew what that meant. For weeks and weeks after the surgery he had vomited what appeared to be spinal fluid and stomach bile on a daily baisis. So much so that he had started keeping a bucket by his side at all times. Nothing helped his nausea. This was always followed by a seizure. And on that morning this is what happened....Bucket...vomiting...seizure..and just like that ..my baby...my world was gone. It was as if someone came in the room and turned out the lights. My world went dark and gray...all hope was lost.



Family and friends showed up as we gathered around and prayed Ryan would respond to us. I begged and pleaded for him to blink or squeeze my hand. But there was nothing. He was taken to surgery with a 1% chance of recovering. It was not meant to be because God had a different plan for my son. We were about to find out very soon what that plan was. In keeping with Ryan's wishes his organs were to be harvested to save others from dying including me. What love my child had for others! He was an amazing young man always thinking of the needs of others. My beautiful son was pronounced brain dead the following day. Alone...my husband still in critical condition from his attempted suicide and unaware our son had died....I sat by Ryan's bed. I remembered when he was a baby and holding him...looking into his big blue eyes and thanking God for blessing me with another child. And now God was taking him away from me. I took Ryan's hand and told him how much I loved him and how brave he was. I told him it was okay to go ...that his grandma was there in Heaven waiting for him. I placed my Lord's Prayer bracelet in his hand then I pulled up this song on my phone and holding my son for the last time in my arms I quietly played it for him....Outside his room I could hear a nurse crying.

I can only imagine 
What it will be like 
When I walk 
By your side 

I can only imagine 
What my eyes will see 
When your face 
Is before me 
I can only imagine 


Surrounded by Your glory, what will my heart feel 
Will I dance for you Jesus or in awe of you be still 
Will I stand in your presence or to my knees will I fall 
Will I sing hallelujah, will I be able to speak at all 
I can only imagine 

I can only imagine 
When that day comes 
And I find myself 
Standing in the Son 

I can only imagine 
When all I will do 
Is forever 
Forever worship You 
I can only imagine
                                                    
To be continued....

5 comments:

  1. Zona, you may not remember me but I was Ryans nurse his last 2 nights at the hospital. I just wanted to let you know I think of him often. Ryan and what happened to him had a huge impact on me. I still remember that morning vividly and wish there was something I could have done. I cried my eyes out when I heard on the news that you received his kidney. I will continue to pray for you and your family.

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    1. Magenrae, I would love to speak with you. Please contact me.

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  2. My heart goes out to you it breaks for you and Ryan. I live with chiari myself and the docs don't know squat I keep getting worse I don't understand. I'm to the point where my head hurts constantly I throw up constantly I forget where I am and simple things I used to do daily I sometimes forget how to do I stay so dizzy I can't turn around fast or go around curves without feeling like I'm falling I don't want to die I have two daughters to raise and no one seems to understand what I'm going through. My mother doesn't care and my daddy is so scared he won't task to me about it I'm so scared and alone

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    1. Please don't go through this alone. Your dad just fears the worst & probably has no clue on what to say or how to help you at all (I'd tell him, "dad, you can't fix this but will you please listen to me, without having to answer"). There are many Chiari & IH Facebook pages where you'll find people just like you..hurting, alone, left by family, feeling like they're slowly & painfully living to die. Please reach out to these people, there's a lady by the name of Brook (Brooke) that has reached out & changed the mind of several people feeling alone & like there was only 1 option.... These aren't doctors on these pages, they're a daughter, mother, friend, sister, whatever, just like you & would love for you to reach out & ask them to help you in any way they can. You never know unless you try. I pray you find something, someone to help you at least if nothing else not to feel alone in this horrible disease.

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