it's all about timing
I think I do the best thinking when I am on my long bike rides and runs. Maybe that is why I enjoy the distance training and racing- I get to think for an extended period of time with no distractions. I had many revelations this weekend during my workouts.
Friday, instead of leaving with a script for IVIG, like we predicted, we left with a confused mind...and a confused heart. We were hoping to have direction, but instead, we were still left with three viable options, that we as parents have to choose from.
Throughout this journey, I have had numerous people tell me "God only gives you as much as you can handle." I started to really despise that phrase- for He must think I am a warrior. There have been so many days that I have asked myself how we are still standing at the end of the day. Today was one of those days. Hunter woke at 4:15 AM and was up for good, despite our attempts to get him back to sleep. When it was a little after 6 and he started asking for the ipad, we told him no and door slamming, yelling, hitting, throwing began. We haven't seen his behavior for about 2 1/2 months. Either our steroid is wearing off, or we are flaring from some type of illness. He scripted in his bed, about TV shows, songs, etc, and was just unsettled. After a late night and a long week, waking at 4 AM was a beating for Peter and I...and the day had only begun. We had the most aggression today that I have seen in a good while.
Times like this it is hard to not get angry. When you see the positive results and feel that sense of normalcy, it seems so unfair to go backwards. We have prayed, we have begged, we have cried to God, asking him to give us some relief. And we saw it...and now it is slowly fading before our eyes.
Hearing Dr. G say on Friday that the "damage has been done" hit me harder than I thought at the time. This weekend, I think I was in a funk from dealing with the acceptance of that information. On my long Sunday run, I realized that I was blessed to not have heard that phrase three years ago. For if someone had told me the damage was done, would I have fought so hard to figure out this disorder? Would we have invested so much time, energy, and finances into figuring out what had caused the change in our son?
Timing is everything. I needed to believe that my son would recover. Every week I would tell myself, "this is the week he is going to get better. This is the week he is going to stop flapping his arms. This is the week he is going to look me in the eyes again."
But that week never came.
He never got better. Instead, he started slipping away from us, further and further.
I looked at old pictures tonight trying to figure out when exactly the moment hit, but it just seemed to be a spiraling cascade of events, the "perfect storm" that my pediatrician described as the onset.
And now we only can pray. Pray that the timing will continue to bless our lives, our decisions, and our future. Every path in our life is decided before we are born. And if this is the path we must walk to help others establish faith, to maintain trust in our God, then how lucky are we to have been the chosen ones.
Here's my song that spoke to me this weekend:
BE BORN IN ME:
http://www.youtube.com/watch?v=DQ8P9fdUMso
Everything inside me cries for order.
Everything inside me wants to hide.
Is this shadow an angel or a warrior?
If God is pleased with me, why am I so terrified?
Someone tell me I am only dreaming.
Someone help me see with Heaven's eyes.
And before my head agrees, my heart is on its knees.
Holy is He...blessed am I.
Be born in me. Be born in me.
Trembling hard somehow I believe.
That you chose me.
I hold you in the beginning, you will hold me in the end, every moment in the middle, make my heart your Bethlehem,
Be born in me.
All this time we've waited for the promise.
All this time you've waited for my arms.
Did you wrap yourself inside the unexpected so we might know that love would go that far?
Be born in me. Be born in me.
Trembling hard somehow I believe.
That you chose me.
I hold you in the beginning , you will hold me in the end. Every moment in the middle make my heart your Bethlehem.
Be born in me.
I am not brave. I'll never be. The only thing my heart can offer is a vacancy.
I'm just a girl, nothing more. I am willing, I am yours.
Be born in me. Be born in me. I'll hold you in the beginning, you will hold me in the end. Every moment in the middle, make my heart your Bethlehem.
Be born in me.
Friday, instead of leaving with a script for IVIG, like we predicted, we left with a confused mind...and a confused heart. We were hoping to have direction, but instead, we were still left with three viable options, that we as parents have to choose from.
Throughout this journey, I have had numerous people tell me "God only gives you as much as you can handle." I started to really despise that phrase- for He must think I am a warrior. There have been so many days that I have asked myself how we are still standing at the end of the day. Today was one of those days. Hunter woke at 4:15 AM and was up for good, despite our attempts to get him back to sleep. When it was a little after 6 and he started asking for the ipad, we told him no and door slamming, yelling, hitting, throwing began. We haven't seen his behavior for about 2 1/2 months. Either our steroid is wearing off, or we are flaring from some type of illness. He scripted in his bed, about TV shows, songs, etc, and was just unsettled. After a late night and a long week, waking at 4 AM was a beating for Peter and I...and the day had only begun. We had the most aggression today that I have seen in a good while.
Times like this it is hard to not get angry. When you see the positive results and feel that sense of normalcy, it seems so unfair to go backwards. We have prayed, we have begged, we have cried to God, asking him to give us some relief. And we saw it...and now it is slowly fading before our eyes.
Hearing Dr. G say on Friday that the "damage has been done" hit me harder than I thought at the time. This weekend, I think I was in a funk from dealing with the acceptance of that information. On my long Sunday run, I realized that I was blessed to not have heard that phrase three years ago. For if someone had told me the damage was done, would I have fought so hard to figure out this disorder? Would we have invested so much time, energy, and finances into figuring out what had caused the change in our son?
Timing is everything. I needed to believe that my son would recover. Every week I would tell myself, "this is the week he is going to get better. This is the week he is going to stop flapping his arms. This is the week he is going to look me in the eyes again."
But that week never came.
He never got better. Instead, he started slipping away from us, further and further.
I looked at old pictures tonight trying to figure out when exactly the moment hit, but it just seemed to be a spiraling cascade of events, the "perfect storm" that my pediatrician described as the onset.
And now we only can pray. Pray that the timing will continue to bless our lives, our decisions, and our future. Every path in our life is decided before we are born. And if this is the path we must walk to help others establish faith, to maintain trust in our God, then how lucky are we to have been the chosen ones.
Here's my song that spoke to me this weekend:
BE BORN IN ME:
http://www.youtube.com/watch?v=DQ8P9fdUMso
Everything inside me cries for order.
Everything inside me wants to hide.
Is this shadow an angel or a warrior?
If God is pleased with me, why am I so terrified?
Someone tell me I am only dreaming.
Someone help me see with Heaven's eyes.
And before my head agrees, my heart is on its knees.
Holy is He...blessed am I.
Be born in me. Be born in me.
Trembling hard somehow I believe.
That you chose me.
I hold you in the beginning, you will hold me in the end, every moment in the middle, make my heart your Bethlehem,
Be born in me.
All this time we've waited for the promise.
All this time you've waited for my arms.
Did you wrap yourself inside the unexpected so we might know that love would go that far?
Be born in me. Be born in me.
Trembling hard somehow I believe.
That you chose me.
I hold you in the beginning , you will hold me in the end. Every moment in the middle make my heart your Bethlehem.
Be born in me.
I am not brave. I'll never be. The only thing my heart can offer is a vacancy.
I'm just a girl, nothing more. I am willing, I am yours.
Be born in me. Be born in me. I'll hold you in the beginning, you will hold me in the end. Every moment in the middle, make my heart your Bethlehem.
Be born in me.
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