January 4th 2009
I am at work on my break, I pulled up this blog to see how it is looking, I have many christian songs that you can scroll through and pick one to listen to and some country music that inspires me to........the song that Gary and I had at our wedding over 8 years ago started playing (we had it playing while the bridesmaids, matron of honor etc walked down the isle) it is called
"FOR THE GLORY OF YOUR NAME" it is by Michelle Tumes #8 on the list.
It says in one part of the song:
"You have touched our lives forever, can we be the same again?"
Right at that moment I was just looking at Joshua's pictures on the right side just as I always do, scrolling down and when I got to the one where it says "Joshua 4 years old", he is wearing a white shirt and smiling looking so happy in his life, then I looked at the one that says "someone got into the powdered donuts" and I caught a look in his eye I never noticed before in that picture, like a little something was missing in him (he was only at most 3 years old in that picture)
Right then between those two pictures with those lyrics playing right at that moment I felt like Joshua has "touched my life forever" and looking at
the next picture " can we be the same again?"
It was like a light turned on, I was so sad because at the ages those pictures were taken we knew something was deeply wrong, I knew the night he was born as I have written before, (for those of you who do not know the full story I believe I have written about it in the past in my older blogs.....) but right now I can not remember...... I have the full story of that night written on my computer saved in a document because I always want to remember when Autism came into our lives even though I did not know what is wha at that time, and the experience that night, that I knew something was wrong. Tonight when I get home I am going to post that document I wrote and have saved so you all can read it, I want to share it with all of you.
Anyway....I felt sad right at that moment I mentioned above as a flood of memories hit me, thinking how during that time I was so frustrated and worried about my son, we did not know it was Autism......he was misdiagnosed in the first year it was "colic" and "allergic to normal formula use soy" (we did not know he was really allergic to the soy, how terrible for him!) the second and third years well "he is not talking and he is so frustrated that he can not tell you what is wrong so that is why he is screaming and crying all the time" "but once he talks he will be fine" then "well the ear infections he had for awhile delayed his speech" (hearing was checked two times, he had perfect hearing) Once he was three we started sign language and he learned immediately socks and shoes and he started talking! But he did not progress with his speech like we thought he would, just some words no sentences, and some of the things he was saying we had no idea what it was because it was just all garbled together. Then "well he is still so frustrated with his speech delay that is why he continues to cry, scream, and now hits his head on the floor or with his hand" use the PECS system (pictures to communicate) we did it he was so miserable, it was like he was so uncomfortable in his own skin, almost like he was sometimes out of his mind in a pain he could not express. Then at age 4 1/2 in February 2005 he was misdiagnosed as ADHD with some Autistic sign but "DEFINITELY NOT AUTISTIC." For a year he was treated with multiple medications for ADHD including Adderall which I feel would have killed him if we would not have stopped it on our own. Finally in January of 2006 he was diagnosed as Autistic with ADHD as a secondary...........................my world stopped, I stayed home with our baby the day of his appointment and my husband took him to the new doctor, after about 3 hours they came home, Joshua yelled "Hi mommy running in the front door and into his room," I looked at my husband I was sitting on the recliner part of our sectional he sat to the right about 2 ft. away from me looking at me and I remember saying "well?" and he said "The doctor said he is autistic, he has autism." I argued with him because I had read so much about autism he had many traits of autism but many of the other signs I had read about he did not have, he never stacked things up or placed them all in order in a line, he never just did one thing for hours and hours on end, never was intrigued by spinning items,...... so many signs he did not have! But so many he did! I cried and cried I said " he will never get married, never drive a car, never have children, never have a prom, etc... " (In the trailer to our documentary I am explaining these same feelings I had in the beginning to the camera, how I felt when we first found out.......... If you watch the documentary trailer (it is one of my first blogs on this site there is a link to it) it is still so painful me at that time to even talk about how I felt the first day I found out.........I do not limit Joshua anymore, but inside of me still hurts...........
So when I looked into his eyes in those pictures and those words were sung in the song, at the same time, I felt I let him down for almost 5 years, he was autistic and I didn't know and I could have done so much more early on, if only I would have opened my mind up more or not trusted those doctors...... and as the song says " YOU HAVE TOUCHED OUR LIVES FOREVER, CAN WE BE THE SAME AGAIN?"
He Joshua has touched my life and my husbands, some of our family live and some of them just ignore it.........
So yes he has touched my life forever FOREVER and NO we will never be the same again.... It almost felt like I just heard the words again "he is autistic" Now this is something I have been living for 3 years now (the diagnosis part) though it seems like many more.....and I think I accept Autism well, or Joshua well, but sometimes GOD reminds me and this morning I was reminded.....again....... But my biggest reminder is this and it is choking me up right now, tears in my eyes, wanting to cry but I am at work trying to hold myself together as I write this............ is that I am here for Joshua and my other children I am here to live Autism......I am not here to live a different life...........this is my life, my Joshua's life and my families life..........I have to do the very best for Joshua and all of my children............but the other kids understand that Joshua needs more........ and no matter what treatments I get for him, he may always be with me just the way he is, and even though every part of my soul wants changes for him, this may be just how he is, and that is OK.........it is OK...........he is autism.........I am autism..........my family is autism........ I want to give him everything I can to give him a shot to not become so upset, to not have his feeling hurt so easily, for him to have a coping mechanism, for him to be happy, to drive, to have children, to watch him go to prom with his girlfriend, to watch him become a husband....I will never stop trying healthy options to help him achieve those things............but I have to remember, GOD gave us Joshua he is the gift I so often speak of, and he also makes me appreciate so much in my life and appreciate for my other children that they have those chances that I spoke of above. Maybe my gift is Autism.....maybe it is..........I love Joshua no matter what autism or not, I love all of my children and I was given another gift today, one I have been given before many times,......... a reminder. I am honored and touched GOD would again take time to give me that gift over and over and not let me fall into the everyday grind of things and irritations, but to love me so much that he takes the time to remind me of something he has already told me many times, because I needed it and did not even realize it..........the way it touched me today, yes it made me sad in some aspect, but it also just gives me hope too............ I do not know how to totally explain it, but that's what it does, it just makes me right now want to be home with my children hearing the laughter, or the crying, hugging them, or laying with them in their beds watching a movie or saying our prayers. Now that I am working so much more it makes me feel like I am not seeing them enough, so I hug them even longer then I used to and smell their hair more often when they sit on my lap.....nothing like smelling your child's hair (unless they were rolling around in the dirt outside) my kids are my purpose, all of them, they each have a sparkle in their own way.........and instead of the inevitable question on a very bad day "why me?' I will continue to answer myself with "why not me?"
I am posting the words to the song I spoke of before when I heard it first back in 2000 I was planning our wedding and I played it over and over and I knew it had to be part of my wedding and it was and it was beautiful. Who would have known 8 years later I would play it again and another beauty was shown in it!! ~~~~Lori
FOR THE GLORY OF YOUR NAME by Michelle Tumes
God, You keep us without failing
As You watch us from above
In our comings and our goings
Sheltered by Your precious love
In the pouring rain of mercy
Comes the grace by which we're saved
For the glory of Your Name
For the glory of Your Name
You have touched our lives forever
Can we be the same again?
May our hearts be ever faithful
Ever faithful as a friend
Let us live that we may serve You
Overflowing with Your praise
For the glory of Your name
For the glory of Your name
We behold the Man of Sorrows
Hanging there upon a cross
Where we wounded One so holy
Yet these wounds are life to us
For the blood You shed was perfect
And You finished work we made
For the glory of Your name
For the glory of Your name
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