Tears, Tribulations, Triumphs, and 2015
Can y'all believe it is truly 2015? The other day I wrote November on a note for work- two months have gone by in a flash, and somehow we are halfway through January.
We had a rocky start to 2015. Four out of five of us ended up getting the flu. Somehow, Peter managed to escape that virus that knocked me flat for 5 days. When I went to the doctor on Sunday afternoon and tested positive (after all three kids had it), the nurse practitioner said, "Your husband is a sitting duck." Not sure if he found that funny, but he avoided me at all costs! Ha!
That same week, Peter lost a close high school friend. "Mo," as we called him, was the sweetest, most generous soul I have ever known. He welcomed me into their group of friends and always made it seem like I had been a part for many years. He came to our wedding, spent time with my family one Thanksgiving, and kept contact with our little family and it never seemed like time went by. Mo was diagnosed with colon cancer just a couple weeks prior, and he ended up passing away last week. As hard as it is to lose someone, it is comforting to think we gained one more guardian angel.
So those were the tears and tribulations. Now on to the triumphs.
Need I say more? Approved. For the entire year of 2015.
Last week, I had attempted to reach our advocate through the concierge program and had left multiple messages with no return phone call. I called every number I could to reach a live person, and finally spoke to a representative that somehow got me to the top of the chain. I explained the situation- Hunter was scheduled for IVIG, our doctor had submitted an appeal with clinical data, and we needed the authorization extension to become an expedited request.
That evening, I received a call from the representative that the denial was overturned, and we were granted authorization for the span of the year. I thanked her between tears, and hung up the phone with disbelief.
We did it again. HE did it again.
After losing a friend, who ended up having medical complications along with his cancer, we both were very nervous to embark on the next round of IVIG. As relieved as I was to receive the phone call that we were approved, it then sunk every worry into my brain and the anxiety began once again.
Are we making the best medical decision possible for Hunter? Have we done too much?
Are we doing the right thing??
I expressed all of our concerns to Dr. G's nurse last week, and told her how we were all getting over the flu, Hunter still had his rash, and Peter was just coming home from laying his friend to rest. She understood all of our hesitation and said it would not be a problem to push back the procedure a week.
Monday, Dr. G called Peter - not once, but twice- to answer his questions and calm his fears. No pressure, but an honest medical opinion regarding the future of our son's treatment.
And then we scheduled his appointment for January 20th.
Even writing now, I still am plagued with the doubts, the worry, the questions. I think about how many treatments he has had, and wonder just how many we have to do until we have reached our new baseline. We are so pleased with his progress, and hearing my family's compliments and reactions to our "new" Hunter, we know we aren't the only ones who see it as well.
He is truly recovering.
The first day back to school caused anxiety for two nights. However, that morning, he woke, got dressed, ate his breakfast, and grabbed his backpack on the way out of the door. Drop off was painless and around 2 PM, I got this picture from his special ed teacher, with the caption, "Guess who is Number 12?"
He had a PURPLE, amazing day.
I had a moment seeing that clip. To most parents, it is just a clip with a number.
To me, it is not just one of 18 clips; it is a clip that is among 17 other regular education, typical peers.
It is a clip that signifies that our child is making it.
It is a beautiful sign of recovery.
Yesterday, I pulled up to the carpool line and my sweet boy, who I had seen smiling a few moments before, was balling. He got into the car, and between sobs said, "I made a picture of you, Mommy! I left it on the carpet in the classroom. I made it for you!" His OCD took over and he couldn't let it go. He wanted that picture for me. I emailed his teacher and asked her to look out for it and put it up for me. She went a step further and emailed it to me-
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I didn't know a stick person could make me cry.
But when I saw this picture, drawn all on his own, in his free time, with "fur mom," I lost it. He has always had empathy and concern for others, but the intrinsic motivation to succeed, please others, and make friends has been absent.
Intrinsically, he wanted to do something nice for me.
If he only knew how much that picture would mean to me...
His teacher also told me he cried the other day in class because a friend had chosen someone else as a partner, and he had wanted to be that friend's partner. He may have had an atypical reaction (with his attempt to leave the classroom and throw his things), but this child, the one diagnosed with AUTISM, wanted to be the chosen one.
I think this picture sums up our life over the past few years:
We ARE where we are meant to be. So many daunting, exhausting moments that attempted to break our spirits, our hearts, our gratitude, and our faith.
However,
somehow,
someway,
we managed to make it to a point of respite. We have witnessed too many rainbows to think that storms rage with no relief.
We have fought that storm that stole so many precious moments from our family- but today, as we sit here thankful for clips and stick figures, I know in my heart that this was meant to be.
Embrace each other, every small miracle, the tiny blessings...
I look forward to sharing our 2015 with you.
"THIS IS NOT GOODBYE"- Sidewalk Prophets
http://youtu.be/iqaXXxp2GgE
This is not goodbye
I know we’ll meet again
So let your life begin
‘Cause this is not goodbye
It’s just “I love you” to take with you
Until you’re home again
The stirring in your soul has left you wondering
Should you stay or turn around
Well, just remember that your dreams they are a promise
That you were made to change the world
So don’t let fear stop you now ‘cause
[Chorus]
I know the brightest star above
Was created by the One who loved
More than we’ll ever know
To guide you when you’re lost
What started as a still, small voice
Is raging now and your only choice
Is to follow who you are
So follow who you are ‘cause
This is not goodbye
I know we’ll meet again
We had a rocky start to 2015. Four out of five of us ended up getting the flu. Somehow, Peter managed to escape that virus that knocked me flat for 5 days. When I went to the doctor on Sunday afternoon and tested positive (after all three kids had it), the nurse practitioner said, "Your husband is a sitting duck." Not sure if he found that funny, but he avoided me at all costs! Ha!
That same week, Peter lost a close high school friend. "Mo," as we called him, was the sweetest, most generous soul I have ever known. He welcomed me into their group of friends and always made it seem like I had been a part for many years. He came to our wedding, spent time with my family one Thanksgiving, and kept contact with our little family and it never seemed like time went by. Mo was diagnosed with colon cancer just a couple weeks prior, and he ended up passing away last week. As hard as it is to lose someone, it is comforting to think we gained one more guardian angel.
So those were the tears and tribulations. Now on to the triumphs.
Last week, I had attempted to reach our advocate through the concierge program and had left multiple messages with no return phone call. I called every number I could to reach a live person, and finally spoke to a representative that somehow got me to the top of the chain. I explained the situation- Hunter was scheduled for IVIG, our doctor had submitted an appeal with clinical data, and we needed the authorization extension to become an expedited request.
That evening, I received a call from the representative that the denial was overturned, and we were granted authorization for the span of the year. I thanked her between tears, and hung up the phone with disbelief.
We did it again. HE did it again.
After losing a friend, who ended up having medical complications along with his cancer, we both were very nervous to embark on the next round of IVIG. As relieved as I was to receive the phone call that we were approved, it then sunk every worry into my brain and the anxiety began once again.
Are we making the best medical decision possible for Hunter? Have we done too much?
Are we doing the right thing??
I expressed all of our concerns to Dr. G's nurse last week, and told her how we were all getting over the flu, Hunter still had his rash, and Peter was just coming home from laying his friend to rest. She understood all of our hesitation and said it would not be a problem to push back the procedure a week.
Monday, Dr. G called Peter - not once, but twice- to answer his questions and calm his fears. No pressure, but an honest medical opinion regarding the future of our son's treatment.
And then we scheduled his appointment for January 20th.
Even writing now, I still am plagued with the doubts, the worry, the questions. I think about how many treatments he has had, and wonder just how many we have to do until we have reached our new baseline. We are so pleased with his progress, and hearing my family's compliments and reactions to our "new" Hunter, we know we aren't the only ones who see it as well.
He is truly recovering.
The first day back to school caused anxiety for two nights. However, that morning, he woke, got dressed, ate his breakfast, and grabbed his backpack on the way out of the door. Drop off was painless and around 2 PM, I got this picture from his special ed teacher, with the caption, "Guess who is Number 12?"
I had a moment seeing that clip. To most parents, it is just a clip with a number.
To me, it is not just one of 18 clips; it is a clip that is among 17 other regular education, typical peers.
It is a clip that signifies that our child is making it.
It is a beautiful sign of recovery.
Yesterday, I pulled up to the carpool line and my sweet boy, who I had seen smiling a few moments before, was balling. He got into the car, and between sobs said, "I made a picture of you, Mommy! I left it on the carpet in the classroom. I made it for you!" His OCD took over and he couldn't let it go. He wanted that picture for me. I emailed his teacher and asked her to look out for it and put it up for me. She went a step further and emailed it to me-
But when I saw this picture, drawn all on his own, in his free time, with "fur mom," I lost it. He has always had empathy and concern for others, but the intrinsic motivation to succeed, please others, and make friends has been absent.
Intrinsically, he wanted to do something nice for me.
If he only knew how much that picture would mean to me...
His teacher also told me he cried the other day in class because a friend had chosen someone else as a partner, and he had wanted to be that friend's partner. He may have had an atypical reaction (with his attempt to leave the classroom and throw his things), but this child, the one diagnosed with AUTISM, wanted to be the chosen one.
I think this picture sums up our life over the past few years:
We ARE where we are meant to be. So many daunting, exhausting moments that attempted to break our spirits, our hearts, our gratitude, and our faith.
However,
somehow,
someway,
we managed to make it to a point of respite. We have witnessed too many rainbows to think that storms rage with no relief.
We have fought that storm that stole so many precious moments from our family- but today, as we sit here thankful for clips and stick figures, I know in my heart that this was meant to be.
Embrace each other, every small miracle, the tiny blessings...
I look forward to sharing our 2015 with you.
"THIS IS NOT GOODBYE"- Sidewalk Prophets
http://youtu.be/iqaXXxp2GgE
This is not goodbye
I know we’ll meet again
So let your life begin
‘Cause this is not goodbye
It’s just “I love you” to take with you
Until you’re home again
The stirring in your soul has left you wondering
Should you stay or turn around
Well, just remember that your dreams they are a promise
That you were made to change the world
So don’t let fear stop you now ‘cause
[Chorus]
I know the brightest star above
Was created by the One who loved
More than we’ll ever know
To guide you when you’re lost
What started as a still, small voice
Is raging now and your only choice
Is to follow who you are
So follow who you are ‘cause
This is not goodbye
I know we’ll meet again
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