Perseverance to Live Each Day Twice
I felt like giving up.
Last week, after the emotional graduation, I was in a trench.
How many milestones would we meet with regret, sadness, and disappointment that we had not yet recovered Hunter?
I was ready to throw my hands up in the air- I honestly didn't think I could handle any more. We were denied more IVIG (which I ripped the letter in two when I received it), Hunter's behavior took a turn for the worse, with aggression, anger, and rages like we had seen prior to IVIG, and the reality of our situation weighed heavy on our minds.
We would be living with Autism and Autoimmune Encephalitis forever.
It's not like I didn't think we wouldn't have issues after IVIG. I knew it wasn't a cure, or a quick fix to a problem that we have been dealing with for over 3 years.
But somewhere deep in my heart, I had just KNOWN that we would recover him. We would bring him back. We would "fix" this problem.
Thursday, I was in a therapy session, and my phone rang and I recognized the number to be the specialty pharmacy who ships the meds. After I finished, I got in the car, forgetting about the voicemail that was left, until a song came on the radio that reminded me of our friend who passed away. The voicemail! I needed to check!
I heard the representative tell me that our meds were scheduled to ship May 27th, for arrival for the next infusion on June 2nd.
I knew it!! Victory!! I called the company back, only to talk with my direct contact who informed me that a mistake had been made, and they were going off of the old authorization date, which was still good through the end of the month. Approval had NOT been given.
I just sat in the car and cried. I felt like a cruel joke had just been played on me. My sadness turned to anger, and I have to admit, I was angry mainly at God.
How can he abandon us in this great time of need?
How much more must we overcome in order to help Hunter? How many more hours, days, months would be lost in trying to justify the dire need for IVIG? How many prayers must we pray before we are given redemption? When I got home from work, I walked into a rage like no other. Ipad was thrown across the room (because it was "skipping" during a video he was watching), doors were slammed, hands were flailing...and little Peyton looked at me and said, "Hunter is mad, mama."
I was done.
I gave up.
I have done it all- tried it all- pleaded with every bone in my body to please, oh please, bring him back.
But somehow, someone, some message or blog entry, some song all helped to not bring Hunter back, but bring ME back. One blog I read was titled, "Would I skip the hardest part if I had to do it all over again?" It made me think about this journey we have been on and questioned my willingness to give up when we have given so much. Sunday afternoon we had plans to spend the day at the pool with a group of friends, but the rain changed our afternoon and we hung out at one of their houses until much later than we expected. One of my friends and I had a lengthy conversation about recent struggles in both of our lives, and after rounding up the kids to head home, we walked outside as the sun was coming down, and raindrops were slowing...and of course, we saw my sign to keep up the fight.
I looked at Peter and he smiled big, and took out his phone without me even asking to take a picture.
We were back.
I devoted all day Tuesday to contacting different portions of insurance branches, the HR department, our advocate, Dr. G's nurse, and I sat down to write a message to those who can overturn decisions. I wrote out the facts, the data, and the contact numbers. But then I turned from the facts to emotion; for in some of these cases, emotions drive decisions. Heart-felt, honest words from a mother who is desperately trying to help her son.
This morning, after a long night with a 104.7 fever from Peyton and worrying about the strep monster, we received an email that the denial would be overturned. We were granted three more months of IVIG.
As silly as it sounds, I high-fived Peter in bed after reading the email. I went out for a quick victory run and this first song came on my Pandora...
https://www.youtube.com/watch?v=6BahULUIdf0
When the path is daunting,
And every step exhausting.
I'm not alone, I'm not alone, no, no.
I feel you draw me closer
All these burdens on my shoulders.
I'm not alone, I'm not alone, You pull me from this place.
Hallelujah, Carry me every day. Carry me all the way.
Hallelujah, Carry me to the, Carry me to the cross.
With those hands, you lift me up from my knees,
and carry me, carry me.
Hallelujah, Carry me every day. Carry me all the way.
Hallelujah, Carry me to the, Carry me to the cross.
So would I skip the hard parts? If I could do it all over again, would we skip the strep that changed it all?
I would definitely take away the heartache, the sadness, the hurt, the anger, and the illnesses....
But in taking away the factors that started this journey,
the journey would not have brought us closer to one another.
brought us small victories that most often go unappreciated or unnoticed.
brought us faith, trust, and taught us to pray as a unit.
brought us unending perseverance.
So instead of erasing the events that truly make us the person we are today, what if you could live each day twice (a suggestion from the movie "About Time")?
We could go back and experience the second time without the frustrations and worries...
for the real troubles don't leave your worried mind until you choose perseverance, optimism, and happiness...
and try the best to enjoy every moment of this remarkable ride.
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Last week, after the emotional graduation, I was in a trench.
How many milestones would we meet with regret, sadness, and disappointment that we had not yet recovered Hunter?
I was ready to throw my hands up in the air- I honestly didn't think I could handle any more. We were denied more IVIG (which I ripped the letter in two when I received it), Hunter's behavior took a turn for the worse, with aggression, anger, and rages like we had seen prior to IVIG, and the reality of our situation weighed heavy on our minds.
We would be living with Autism and Autoimmune Encephalitis forever.
It's not like I didn't think we wouldn't have issues after IVIG. I knew it wasn't a cure, or a quick fix to a problem that we have been dealing with for over 3 years.
But somewhere deep in my heart, I had just KNOWN that we would recover him. We would bring him back. We would "fix" this problem.
Thursday, I was in a therapy session, and my phone rang and I recognized the number to be the specialty pharmacy who ships the meds. After I finished, I got in the car, forgetting about the voicemail that was left, until a song came on the radio that reminded me of our friend who passed away. The voicemail! I needed to check!
I heard the representative tell me that our meds were scheduled to ship May 27th, for arrival for the next infusion on June 2nd.
I knew it!! Victory!! I called the company back, only to talk with my direct contact who informed me that a mistake had been made, and they were going off of the old authorization date, which was still good through the end of the month. Approval had NOT been given.
I just sat in the car and cried. I felt like a cruel joke had just been played on me. My sadness turned to anger, and I have to admit, I was angry mainly at God.
How can he abandon us in this great time of need?
How much more must we overcome in order to help Hunter? How many more hours, days, months would be lost in trying to justify the dire need for IVIG? How many prayers must we pray before we are given redemption? When I got home from work, I walked into a rage like no other. Ipad was thrown across the room (because it was "skipping" during a video he was watching), doors were slammed, hands were flailing...and little Peyton looked at me and said, "Hunter is mad, mama."
I was done.
I gave up.
I have done it all- tried it all- pleaded with every bone in my body to please, oh please, bring him back.
But somehow, someone, some message or blog entry, some song all helped to not bring Hunter back, but bring ME back. One blog I read was titled, "Would I skip the hardest part if I had to do it all over again?" It made me think about this journey we have been on and questioned my willingness to give up when we have given so much. Sunday afternoon we had plans to spend the day at the pool with a group of friends, but the rain changed our afternoon and we hung out at one of their houses until much later than we expected. One of my friends and I had a lengthy conversation about recent struggles in both of our lives, and after rounding up the kids to head home, we walked outside as the sun was coming down, and raindrops were slowing...and of course, we saw my sign to keep up the fight.
I looked at Peter and he smiled big, and took out his phone without me even asking to take a picture.
We were back.
I devoted all day Tuesday to contacting different portions of insurance branches, the HR department, our advocate, Dr. G's nurse, and I sat down to write a message to those who can overturn decisions. I wrote out the facts, the data, and the contact numbers. But then I turned from the facts to emotion; for in some of these cases, emotions drive decisions. Heart-felt, honest words from a mother who is desperately trying to help her son.
This morning, after a long night with a 104.7 fever from Peyton and worrying about the strep monster, we received an email that the denial would be overturned. We were granted three more months of IVIG.
As silly as it sounds, I high-fived Peter in bed after reading the email. I went out for a quick victory run and this first song came on my Pandora...
https://www.youtube.com/watch?v=6BahULUIdf0
When the path is daunting,
And every step exhausting.
I'm not alone, I'm not alone, no, no.
I feel you draw me closer
All these burdens on my shoulders.
I'm not alone, I'm not alone, You pull me from this place.
Hallelujah, Carry me every day. Carry me all the way.
Hallelujah, Carry me to the, Carry me to the cross.
With those hands, you lift me up from my knees,
and carry me, carry me.
Hallelujah, Carry me every day. Carry me all the way.
Hallelujah, Carry me to the, Carry me to the cross.
So would I skip the hard parts? If I could do it all over again, would we skip the strep that changed it all?
I would definitely take away the heartache, the sadness, the hurt, the anger, and the illnesses....
But in taking away the factors that started this journey,
the journey would not have brought us closer to one another.
brought us small victories that most often go unappreciated or unnoticed.
brought us faith, trust, and taught us to pray as a unit.
brought us unending perseverance.
So instead of erasing the events that truly make us the person we are today, what if you could live each day twice (a suggestion from the movie "About Time")?
We could go back and experience the second time without the frustrations and worries...
for the real troubles don't leave your worried mind until you choose perseverance, optimism, and happiness...
and try the best to enjoy every moment of this remarkable ride.
Maya Angelou, who passed away today.
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