a little rain, a little snow, and a whole lotta sunshine
Wednesday we drove to the hospital in heavy rain. Rain on IVIG days never makes me happy- I look for meanings behind the weather, so of course my head was filled with worries about what the day would hold. It was very cold and windy, and upon exiting the car, my umbrella flipped inside out. Hunter and I ran inside, with him yelling, "I AM GETTING ALL WET!!!!!!!" until we were under cover and in the warm building. We were waiting in his hospital room to get his pre-meds, and Hunter ended up urinating three times in the short time we were there. Of course, with the weather, I had worries and my anxiety about the status of his kidney function kicked in to high gear (the IVIG is a heavy protein load on the kidneys). I asked the nurses if they were concerned, and they checked his creatine levels from Tuesday, and all the labs looked good. A little later, we heard the nurses yell in excitement. We looked out the window, and even though it was 39 degrees, that precipitation wasn't coming down as rain anymore...
it was snow.
Beautiful, big white flakes of snow.
Even though the snow lasted for just a few minutes, it was enough (and a sweet text from an encouraging friend) to remind me that I just decided that "TRUST" was my key word for 2015.
Hunter has had a headache for a couple of days, his IV flushing has been a little traumatic this round (the original insertion is too close to another vein, so there is pressure on the one with the straw in it), and taking his pre-meds has been very challenging. I had requested dye-free Benadryl and Tylenol, and it helped for a few days to change it from the "yucky pink medicine," but yesterday and today he told me, "I just really don't like those! They taste gross!"
But never once did he hit me. Instead of acting out this round when his head hurt, he used his words to tell me exactly what was wrong. "Mommy, having a headache means your head hurts."
"I told you I don't like that medicine! I don't like taking it!"
"I don't like it when you floss (he meant to say flush) my IV!"
Click, click, click. All these beautiful connections that have encouraged him to use words instead of actions.
Today, we finish IVIG #9. And looking out the window, I don't see the rain that was predicted to last throughout the day.
I see sunshine.
Hunter has counted down the days, letting me know that today is the day he gets his IV out. He asked me yesterday if this was the last time he would have to get IVIG.
Unfortunately not.
But this morning on our drive, I told him that he would have to come back in March, and then hopefully only three more times in 2015, and then we would hopefully finish the next year.
Maybe we will overtake his immune system by the time we celebrate his eighth birthday.
When he turned five, we had just finished the steroid burst as part of diagnostic criteria to start treatment. It was the first time in three years that we were able to sing happy birthday to him.
How amazing would it be, three years later, if we could celebrate not just the eighth year of his life, but the third year of his recovery process...
and the first year of winning the battle against this autoimmune disorder.
So going back to our magical snowflakes...the neatest thing about a snowflake is that no two are alike. They dance around as they fall, and when they touch the ground, their unique beauty is connected by the others around them.
My hope is that some day, all children with disabilities will realize they are beautiful, they are unique, and they, too, can be connected just like their peers.
Last night on Parenthood, Max told his peers and his parents that children with Autism have an 85% chance for unemployment after school.
Peter and I sat there, crying with the parents, as they reassured Max that he would beat that statistic, for he is smart, funny, talented, and special.
We have already beaten many statistics...and we aren't going to let a little study deflate our (and his!) confidence at any point in our lives.
So with that,
let it snow.
"The First fall of snow is not only an event, it is a magical event. " - JB Priestly.
it was snow.
Beautiful, big white flakes of snow.
Even though the snow lasted for just a few minutes, it was enough (and a sweet text from an encouraging friend) to remind me that I just decided that "TRUST" was my key word for 2015.
Hunter has had a headache for a couple of days, his IV flushing has been a little traumatic this round (the original insertion is too close to another vein, so there is pressure on the one with the straw in it), and taking his pre-meds has been very challenging. I had requested dye-free Benadryl and Tylenol, and it helped for a few days to change it from the "yucky pink medicine," but yesterday and today he told me, "I just really don't like those! They taste gross!"
But never once did he hit me. Instead of acting out this round when his head hurt, he used his words to tell me exactly what was wrong. "Mommy, having a headache means your head hurts."
"I told you I don't like that medicine! I don't like taking it!"
"I don't like it when you floss (he meant to say flush) my IV!"
Click, click, click. All these beautiful connections that have encouraged him to use words instead of actions.
Today, we finish IVIG #9. And looking out the window, I don't see the rain that was predicted to last throughout the day.
I see sunshine.
Hunter has counted down the days, letting me know that today is the day he gets his IV out. He asked me yesterday if this was the last time he would have to get IVIG.
Unfortunately not.
But this morning on our drive, I told him that he would have to come back in March, and then hopefully only three more times in 2015, and then we would hopefully finish the next year.
Maybe we will overtake his immune system by the time we celebrate his eighth birthday.
When he turned five, we had just finished the steroid burst as part of diagnostic criteria to start treatment. It was the first time in three years that we were able to sing happy birthday to him.
How amazing would it be, three years later, if we could celebrate not just the eighth year of his life, but the third year of his recovery process...
and the first year of winning the battle against this autoimmune disorder.
So going back to our magical snowflakes...the neatest thing about a snowflake is that no two are alike. They dance around as they fall, and when they touch the ground, their unique beauty is connected by the others around them.
My hope is that some day, all children with disabilities will realize they are beautiful, they are unique, and they, too, can be connected just like their peers.
Last night on Parenthood, Max told his peers and his parents that children with Autism have an 85% chance for unemployment after school.
Peter and I sat there, crying with the parents, as they reassured Max that he would beat that statistic, for he is smart, funny, talented, and special.
We have already beaten many statistics...and we aren't going to let a little study deflate our (and his!) confidence at any point in our lives.
So with that,
let it snow.
"The First fall of snow is not only an event, it is a magical event. " - JB Priestly.
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