IVIG Round EIGHT- what a difference a year makes
Wow. We are on the eighth round of IVIG.
Last year at this time, we were denied for a third time our initial requests for IVIG. I wrote the following last November:
"So I need to let this decision rest. I need to accept this denial, even if I truly hope it may not be the end of the road... but at this moment in time, I have to be OK with it. Not just for me, but for the well-being of our family and friends. It's time to live in the moment and stop stressing about the future. It's time to cherish every milestone, create happiness, be my best-self, believe in miracles, and remember to breathe."
What a difference a year makes. I chose to be OK with the decision for the time being, and look where we are.
ROUND EIGHT.
From November until we were approved in January, we let the decision rest, but continued to pray, continued to hope, and continued to live life as a parent of a child with Autism.
This November, we are still parents of a child with Autism. But I am NOT the same person. And neither is Hunter.
This morning as we drove to IVIG, Hunter told me he didn't want the needle to hurt. He said he was scared and wanted to know how long it would take. After we finished that conversation with assurances, he started on another topic- one I never dreamed I would hear.
"Mommy, you can't marry a man you just met."
Yes, he took the line from Frozen, but the conversation continued.
"Nope, you can't. You don't know the person well enough to marry them."
Hunter said, "Anna did the wrong thing."
"Yep, you have to date the person first."
Hunter: "What does date mean?"
"Well, you go to events, or go to dinners, spend time together, go to the movies. I dated your daddy for four years before we got married."
Hunter: "You have to date someone for four years before you can get married?"
I laughed. "Well, sometimes you know sooner. But mommy and daddy waited four years and then we got married. Do you remember how Uncle Greg and Aunt Tiffany got married this summer?"
Hunter: "Did they date first?"
I laughed again. "Yep! When they realized they were the right person for one another, they got married."
Hunter: "Anna was going to marry the wrong person."
And on and on this conversation went. Even though it stemmed from reciting a movie line, we really had a true conversation with meaning, detail, clarification, and understanding.
It's moments like those that I am so incredibly thankful. This morning, Hunter ran into the bathroom and said, "MOMMY! When you finish your shower, come out and see something so amazing! There is SNOW on the roof of our house!"
Last year, I could have heard this same type of exchange. But the detail, excitement, and sentence formulation would not have been at the same caliber as this year.
And yes, of course, he has matured over the past year. His language skills SHOULD have improved and he SHOULD have learned to control his anxiety. He SHOULD have been able to transition from preschool to kindergarten with relatively little trouble, and he SHOULD have just put a pair of pants on in the morning when the temperatures dropped below freezing.
But then again, he SHOULD have had a normal childhood. He SHOULD have recovered from strep and the strep SHOULD have stayed in his throat and not traveled to his brain.
He SHOULD have been finishing his own soccer season this month.
He SHOULD have been able to participate in the last school assembly to see his sister get her award for Citizen of the Month.
And he SHOULD be in school this week instead of sitting in this hospital room.
So if you take away the SHOULD haves, the SHOULD have nots, and the WOULD HAVE BEENS...
we are right here, in the present, living our lives the way it has been planned all along.
I know that we would not be here without medical intervention, divine intervention, and a whole hell of a lot of believing and praying.
We meet with Dr. G in January to evaluate progress and sustainability. This morning, I felt like we could have gone longer without intervening. He has had great behavior and his eyes (my tell-tale sign of recovery) are still bright and alive. His vitiligo on his hip is starting to repigment, and that spot doesn't receive any sun exposure...so I know the IVIG is helping. He has had positive reports at school and even though we have had a few blips, we can't expect 100% compliance- that's not normal for anyone.
Today's prayer on Catholic Online:
"Dear Saint Anthony, your prayers obtained miracles during your lifetime. You still seem to move at ease in the realm of minor and major miracles. St. Anthony, Performer of Miracles, please obtain for me the blessings God holds in reserve for those who serve Him. Pray that I may be worthy of the promises my Lord Jesus attaches to confident prayer."
Thank you for blessing our lives with minor, major, and unimaginable miracles. We will continue to praise you confidently.
Last year at this time, we were denied for a third time our initial requests for IVIG. I wrote the following last November:
"So I need to let this decision rest. I need to accept this denial, even if I truly hope it may not be the end of the road... but at this moment in time, I have to be OK with it. Not just for me, but for the well-being of our family and friends. It's time to live in the moment and stop stressing about the future. It's time to cherish every milestone, create happiness, be my best-self, believe in miracles, and remember to breathe."
What a difference a year makes. I chose to be OK with the decision for the time being, and look where we are.
ROUND EIGHT.
From November until we were approved in January, we let the decision rest, but continued to pray, continued to hope, and continued to live life as a parent of a child with Autism.
This November, we are still parents of a child with Autism. But I am NOT the same person. And neither is Hunter.
This morning as we drove to IVIG, Hunter told me he didn't want the needle to hurt. He said he was scared and wanted to know how long it would take. After we finished that conversation with assurances, he started on another topic- one I never dreamed I would hear.
"Mommy, you can't marry a man you just met."
Yes, he took the line from Frozen, but the conversation continued.
"Nope, you can't. You don't know the person well enough to marry them."
Hunter said, "Anna did the wrong thing."
"Yep, you have to date the person first."
Hunter: "What does date mean?"
"Well, you go to events, or go to dinners, spend time together, go to the movies. I dated your daddy for four years before we got married."
Hunter: "You have to date someone for four years before you can get married?"
I laughed. "Well, sometimes you know sooner. But mommy and daddy waited four years and then we got married. Do you remember how Uncle Greg and Aunt Tiffany got married this summer?"
Hunter: "Did they date first?"
I laughed again. "Yep! When they realized they were the right person for one another, they got married."
Hunter: "Anna was going to marry the wrong person."
And on and on this conversation went. Even though it stemmed from reciting a movie line, we really had a true conversation with meaning, detail, clarification, and understanding.
It's moments like those that I am so incredibly thankful. This morning, Hunter ran into the bathroom and said, "MOMMY! When you finish your shower, come out and see something so amazing! There is SNOW on the roof of our house!"
Last year, I could have heard this same type of exchange. But the detail, excitement, and sentence formulation would not have been at the same caliber as this year.
And yes, of course, he has matured over the past year. His language skills SHOULD have improved and he SHOULD have learned to control his anxiety. He SHOULD have been able to transition from preschool to kindergarten with relatively little trouble, and he SHOULD have just put a pair of pants on in the morning when the temperatures dropped below freezing.
But then again, he SHOULD have had a normal childhood. He SHOULD have recovered from strep and the strep SHOULD have stayed in his throat and not traveled to his brain.
He SHOULD have been finishing his own soccer season this month.
He SHOULD have been able to participate in the last school assembly to see his sister get her award for Citizen of the Month.
And he SHOULD be in school this week instead of sitting in this hospital room.
So if you take away the SHOULD haves, the SHOULD have nots, and the WOULD HAVE BEENS...
we are right here, in the present, living our lives the way it has been planned all along.
I know that we would not be here without medical intervention, divine intervention, and a whole hell of a lot of believing and praying.
We meet with Dr. G in January to evaluate progress and sustainability. This morning, I felt like we could have gone longer without intervening. He has had great behavior and his eyes (my tell-tale sign of recovery) are still bright and alive. His vitiligo on his hip is starting to repigment, and that spot doesn't receive any sun exposure...so I know the IVIG is helping. He has had positive reports at school and even though we have had a few blips, we can't expect 100% compliance- that's not normal for anyone.
Today's prayer on Catholic Online:
"Dear Saint Anthony, your prayers obtained miracles during your lifetime. You still seem to move at ease in the realm of minor and major miracles. St. Anthony, Performer of Miracles, please obtain for me the blessings God holds in reserve for those who serve Him. Pray that I may be worthy of the promises my Lord Jesus attaches to confident prayer."
Thank you for blessing our lives with minor, major, and unimaginable miracles. We will continue to praise you confidently.
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