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An update for my Spark friends

Tuesday, September 17, 2013

Hello everyone emoticon
First let me emoticon for all the kind words of support, goodies & being kind enough to take of your own precious time to support me or reach out to help me feel less alone.

You may never know how much just a quick hello, I'm thinking of you meant. Or Bible verses left , to lift my spirits. I have dealt with the pain of physical illness in those I love, as MANY of you have. My brother was in a car accident at 19, was in a coma for sometime & died. I cared for my father as he lost the battle at 57 to colon cancer. I would go to him right when my son went to school, stay there until my son came home.Wait an hour for my husband to come home.Go back.Stay until 8:00. Went home, put my son to bed. Stayed up until 2:00-3:00am every morning doing bills, house cleaning, laundry, cooking meals to leave for my family. Repeat it daily for months until he died.
A year later, my husband, 38, after suffering severe pain, numerous Doctor & ER visits was finally diagnosed with stage 4 pancreatic cancer & died a year later. I didn't work .He was a very private man. I stayed there & cared for him & my Autistic son . I only had Hospice come in the last few days so they could instruct me in how to help him transition from this life. To watch that... there is no words. God bless my DH.

Now , my son. You all know he is Autistic, which is a struggle in it's own, but one I have embraced as who he was meant to be.I'll just help him be the happiest, most independent Autistic he could be. This meant daily therapies , diet changes. There wasn't any sacrifice I wouldn't endure to see him happy. Which he was most of his childhood, don't get me wrong it was VERY challenging , but he seemed happy.
In the first eight years of his life however he had nine surgeries & came close to death. We lived at the Doctors & out of state hospitals. The Doctors used to ask me if I was a nurse in another state because I learned how to run his machines, change his dressings & assisted the other wards in our room. haha. He made it through & then started to become well after eight.

So you see, I'm no stranger to pulling up my bootstraps & dealing with the hard stuff. I was beaten every time, but not defeated.

Then, mental illness ... this IS a whole other monster, a dark lonely place

My son turned 14, grew whiskers, acne & turned into another child .Defiant & angry, as I'm sure many of you have experienced with typical teens. His OCD started to show then. He'd only walk on certain squares on a tiled floor, try to manage that in a mall
He wouldn't say words with O's . He could negate them quickly, pretty smart kid, you couldn't pat him or he'd go into a fit . I came up with erasing the tap if someone did it, that worked Thank God., etc. , etc.The rules consume his life.
Behaviors & OCD continued to worsen. He had to start attending classes for behavior students.At sixteen I gave in & started bringing him to a Psychiatrist for medication intervention , because he wasn't functioning well & school was finding him VERY challenging, to say the least. This brought us on a horrible med test & my son was the guinea pig. Four years of OCD & other meds. They would start to work, but then level out.He would be on a small dose & need to go much higher because he has severe OCD. Next dose, still not even a medium range & he'd become very angry. School would call me constantly. i'd talk him down over the phone, frantically hoping he'd respond so i didn't get fired from work. Having to leave work because he was grabbing someone or locked in bathroom, etc. I was the child who ALWAYS did as I was told without question, so to try & grasp this was almost unbearable, but I knew it wasn't his fault.
The reason he'd become angry I just found out this year, is because he has Bi'Polar & the OCD drug helps the OCD, but will trigger a Bi-Polar reaction if you have BP ! Finally , at least I understand.
In Jan of this year he was hospitalized because he was breaking everything in my home, holding me down, locking me in rooms,yelling in my face, completely out of control it's the scariest thing I've ever seen in my life & I've have dealt with some scary issues. I saw this coming.It's like a big freight train is headed for your child , you don't see it yet , but you hear the horn in the distance, you scramble, but to no avail, he's still on the tracks, you cry out for help, but they cannot move him either. You see the light, then the train & step in front to brace for the impact. You have lost control & there's nothing you can do but watch as it happens.

I had to call the police. He had to be taken down in a very violent way.Mind you he's like a little boy in his mind & can't understand what's happening. He started to have a seizure . The staff at the mental ward was great, but it isn't set up for special needs individuals. He was violently taken down & sedated over & over & had to be put five point restraints.He'd yell out Mommy help me !
This changed who i was. this took a part of me I'll never regain. Now it's returned & he's been abusive & he's suffering in his own mind & I do NOT know how to help him. His OCD med was just upped about a week ago . He is showing improvement & it gives me some hope. However, he did have to be restrained at his program yesterday, but the morning was better than usual.

I know this is probably the longest blog in Spark's history. It wasn't meant to be, but I guess as I began to write this all poured out . I have always expressed my feelings in written word. I am sorry for the length, but you all have been SO supportive & I wanted you to understand.

I want you all to know how much your support has meant to me & that I think of you all often & that I've come to a place I'm just drained. My spirit is weakened. My faith is being tested & I don't know how much more I have to give. Where is the line drawn when your child is in peril, though ? Please know I DO care about your journeys. I am just trying to keep my head above water right now.As I told my friend, I am doing this alone , for years. Some single parents take advantage of respite every month or two. I cannot even do that because they can't control him.So it's been a long hill to climb. I KNOW I have been blessed along the way & am SO thankful. I guess my strength is wavering. I turn to my Lord all the time. I wouldn't have lasted this long if not for His Grace.
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Member Comments About This Blog Post
    I wish I could hold you in my arms and let you have a good long cry. Like Dachelle, I am so ashamed of anything that I have complained about. You have been through it my friend. I cannot imagine how hard that was for you to pour all of that out, but I am sure it was like therapy to blog it as well. (it was not long at all, btw). I am so happy you shared your story with us.
    I think mental illness is so much harder to deal with than any physical illness. First of all there are so many people who just don't realize that it is a disease. Also to outsiders they cannot know at all what you are going through. They don't see the physical symptoms so it is harder for them to realize that there is anything wrong.
    You are such a strong woman, but don't be afraid to ask for help. It appears that your whole life you have given and given. That is probably why you feel you have the need to apologize for not being there for us. I know you are with me, I should be the least of your worries, but to know that you are thinking of me in the midst of all you are going through is the most caring I have felt in a very long time.
    I know you have a strong faith, so I am not going to tell you to rely on Him. You already do. Just know that I am miles away praying for you and your son. Again here are some hugs. My shoulder is always here for you.
    1735 days ago
    I wish I could give you a hug in person! I know God only gives us what we can handle as long as we journey with him but sometimes the burdens seem so heavy. Don't worry about us though. You need to take care of you and your son. Nothing in this world is more important than that.

    I just learned tonight that my step-sister is in a psychiatric hospital. She has severe mental illness and is in her early 20s. I can't imagine what my step mom is going through. My heart is heavy for you, for her and for my son. It is a medical condition that is so hard to deal with and properly treat!

    Keep reaching out, keep writing, keep doing what you need to take care of you!
    1736 days ago
  • MRSP90X
    I sure do mirror Dachelle's comments as well. I read this earlier in the day, prayed, and tried to think of the appropriate scripture to give. I was reminded of what my friend to me the other day about suffering. It is a reminder not only to lean on the Savior, but that this is not our home and that we need not to get to attached to this place. No matter what the circumstances are, our suffering and fears, our glory is in heaven! He is there preparing a place for us. When we get there, all our tears will be wiped away. Pain and suffering draw us away from wordly cares and brings us closer to Him. I was listening to s song driving home, and I could not help but shout in praise thinking that no matter what ever happens here on earth, I will be with Him in glory!! Nothing is more important than that, and nothing will ever take that away! Total surrender and knowing that God has everything under control and is for my good knowing that. He can do whatever He wants with my life if it brings me closer to Him! That is glory. Praise His name!
    1736 days ago
    Such a hard life!
    Your optimism is just unbelievable and your courage an inspiration.

    Praying for you and your son. emoticon emoticon
    1736 days ago
    First of all, I have read longer blogs. Yours is just fine, my friend. I am glad you wrote it because I understand more fully what you are going through and it is A LOT!! emoticon Your faith and courage are incredible. And please know that our Father in Heaven and Jesus are there also to hear your pain and see your tears - that's okay too. emoticon

    You are a very special lady and I am so glad I have met you. God will bless you and your beautiful son. I am not sure how or when but your blessings will continue to come and some special ones are on their way too. emoticon emoticon
    Love, Chelsea emoticon
    1736 days ago
    Oh, Sweetie! I'm so sorry you've had to go through all this. I will keep you & your son in my prayers. Look to the Father for the strength you need -- He has an endless supply. emoticon emoticon emoticon
    1737 days ago
    You are in my thoughts and prayers. emoticon Take care of yourself. Remember we are here if you need us. emoticon
    1737 days ago
  • MSHEL7
    My heart goes out to you as well. I am not sure anyone could go through this situation that you are going through without complaint and with such a heart as yours. You are truly an inspiration. You have me beat all to pieces, I am not sure I could have gotten through the years that you have without a major melt down. You are a blessing to your son and to those you have cared for in the past. I am so sorry for your losses, you have suffered more in loss than seems right, but as I told you before, God knew that before He sent you into these lives, He knew you were the person who could handle it and be the right person for the place He was putting you. You have more strength than you know, and we can all see it, your light shines before men.
    1737 days ago
  • NHES220
    I mirror Dachelle's sentiments. I cannot imagine what you are going through alone with your son. You have shouldered many losses in your life and you are such a strong person. I pray for your son to have peace and I pray for your continued strength in dealing with his illness. Mental illness is such a tricky thing to deal with as there is still so much they do not know, medications seem to work for a while and then stop working. Hang in there and I am sending prayers your way.
    1737 days ago
    Oh, sweet girl, I am so sorry! I know that God gives us grace to handle the cards we have been dealt, but this just seems like too much for anyone to have to bear alone. My heart goes out to you. I wish there was something I could do to help ease your burden, but all I can do from here is pray, so that is what I will do. Your strength and sweet spirit amazes and humbles me. I see the petty things I complain about daily and I am ashamed. I have been blessed with healthy children and a healthy husband. I still have my parents. I have more support than I need, yet I take it all for granted.

    I pray that your burden will be lessened and that DS will be given peace in his mind. I also pray for rest and wisdom for you in knowing how to deal with your situation.

    Please know that you are in my thoughts and prayers daily. Blessings to you, my sweet friend.

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    1737 days ago
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