I have a second IEP meeting today. At 3-ish. EST.
I'm hoping that those who've become close to me...to Trevy...through this journey. Will do me a huge favor?
Pray alongside me...
That I will exude...
peace...
grace...
clarity...
charity...
flexibility...
and more Peace.
I was reflecting today. Scratch that. I've been reflecting lately. On the past three years. And it occurred to me that I...we...have been at war from day one. D day. D as in diagnosis.
I thought about using the term - advocate. Rather than war. But honestly...advocate is such a wussy term for what we've lived through. And does not adequately or honestly encompass our journey.
Because the emotions raging through our hearts were much stronger than that of an advocate when we were on the phone. Sobbing and begging our insurance company to please cover the damn $150,00 drug. Because without it our seven month old child will...
What? I don't even know that I can wrap what into words. Sometimes the silence speaks more anyway.
I have warred (or nagged if you prefer) with our neurologists to trial meds. To access tests. To have EEGs. To guide therapies.
I have warred with our new insurance over the same thing.
I single handedly spearheaded the ultimate battle to slay the Seizure Monster. Do you know how utterly gutting it is. To watch your child's body possessed by something...by a Monster...that if you could just access the right weapon...
With the right weapon he could be freed????
How could you possibly? Unless you're living it...
Which is why I fought to bring those in Trevy's life who aren't living it...to the same level of understanding that I am. Or at least close.
Speaking of living. Jonathan and I lived through the most horrific three weeks that any parent should ever have to. Trevy's death walk wasn't some mysterious infection...or disease...over which we were powerless. We chose to lead him to the brink of death. I personally...passionately...fought lay him on that gurney! We chose to let them drill a hole through his skull. To peel his face away. And remove half of his brain. And spill so much blood that it would require two transfusions...to remain alive. On the table. Never mind the after. If he had died on that table...it would have been mine to own. I am the one who carried him there. I fought for the testing. I fired off emails and phone calls like they were my artillery. I won the battle to take him there. To the brink of death. A war so intense...my mind rebels against even trying to imagine what it looked like in the Slaying Room. As it was my heart was so entrenched in the emotional warfare that I was afraid it may just give up the ghost. Sometimes I think that would be easier...
Anyway...
And so it occurred to me that I have been entrenched in the battle for Trevy for so long. So very long. That I'm not sure I know how to lay down my weapons. And have a Peace Talk.
Which is why I'm asking you guys for a personal favor...
Pray over me...peace...and courage...and charity...and clarity...and
Trust that Providence is in this...
And I am not Alone.
I'm hoping that those who've become close to me...to Trevy...through this journey. Will do me a huge favor?
Pray alongside me...
That I will exude...
peace...
grace...
clarity...
charity...
flexibility...
and more Peace.
I was reflecting today. Scratch that. I've been reflecting lately. On the past three years. And it occurred to me that I...we...have been at war from day one. D day. D as in diagnosis.
I thought about using the term - advocate. Rather than war. But honestly...advocate is such a wussy term for what we've lived through. And does not adequately or honestly encompass our journey.
Because the emotions raging through our hearts were much stronger than that of an advocate when we were on the phone. Sobbing and begging our insurance company to please cover the damn $150,00 drug. Because without it our seven month old child will...
What? I don't even know that I can wrap what into words. Sometimes the silence speaks more anyway.
I have warred (or nagged if you prefer) with our neurologists to trial meds. To access tests. To have EEGs. To guide therapies.
I have warred with our new insurance over the same thing.
I single handedly spearheaded the ultimate battle to slay the Seizure Monster. Do you know how utterly gutting it is. To watch your child's body possessed by something...by a Monster...that if you could just access the right weapon...
With the right weapon he could be freed????
How could you possibly? Unless you're living it...
Which is why I fought to bring those in Trevy's life who aren't living it...to the same level of understanding that I am. Or at least close.
Speaking of living. Jonathan and I lived through the most horrific three weeks that any parent should ever have to. Trevy's death walk wasn't some mysterious infection...or disease...over which we were powerless. We chose to lead him to the brink of death. I personally...passionately...fought lay him on that gurney! We chose to let them drill a hole through his skull. To peel his face away. And remove half of his brain. And spill so much blood that it would require two transfusions...to remain alive. On the table. Never mind the after. If he had died on that table...it would have been mine to own. I am the one who carried him there. I fought for the testing. I fired off emails and phone calls like they were my artillery. I won the battle to take him there. To the brink of death. A war so intense...my mind rebels against even trying to imagine what it looked like in the Slaying Room. As it was my heart was so entrenched in the emotional warfare that I was afraid it may just give up the ghost. Sometimes I think that would be easier...
Anyway...
And so it occurred to me that I have been entrenched in the battle for Trevy for so long. So very long. That I'm not sure I know how to lay down my weapons. And have a Peace Talk.
Which is why I'm asking you guys for a personal favor...
Pray over me...peace...and courage...and charity...and clarity...and
Trust that Providence is in this...
And I am not Alone.
Comments
love,
jody
If you don't fight for Trevor, they won't.
Keep the same fire for the IEP. This peace you speak of is over-rated.
Mike...it can't be all war all the time. Otherwise I might shrivel up and die. The peace I want isn't the kind the rolls over and play dead either...I just need to feel that peace that I'm doing the right thing. For Trevy.
Overall the meeting went really well. I didn't push for more OT or PT. But that's because I was assured that at any time if they or I feel he needs more...it will be added to the IEP. Call me crazy...but I'm going to trust them. And he will be getting speech daily. Which was my biggest worry.
Anyway...I'm bushwhacked now. And I haven't made dinner yet...hooray. Then again...maybe it'll be Chinese tonight?
...danielle
I obviously am late in your prayer request BUT...
God ultimately wants us to trust and surrender to Him...its called FAITH...
Trevy is His child-you were chosen for this amazing little boy...God makes NO mistakes...
Place your fears, your worries...place Trevy at the feet of Jesus...then be really patient, look for his providence in your life...in T's life...He won't disappoint!
So hard...trust me - I know...BUT...
You will feel HIS PEACE, overcome you... entirely...and that is exactly what I will be praying for...
Jesus can slay and conquer any/everything!
Sending love and hugs my friend
So being late I pray for extended peace.
As much as I understand Mike's will to continue the fight, I agree with you that the need for peace is a strong counter.
Also agreeing with Nathan's Mom on approach to the schools. I'm sure you've heard this before, but therapy provided by schools has different intent than that of a medical provider. The difference is not always clear when the child is young, but will all too quickly become apparent.
More therapy time is not always better, and esp if it must be 'fought for'. There are definite down sides to fighting with a school district. Like she said, you can pull out the guns if you need to.
Peace, Barbara
The "fight" must always be tempered with "peace"...If I had been in "fight mode" for 25 years, well, Colby would be an orphan for sure....
It is a delicate balance...And you are already there...
Cyndi
PS: Sorry I didn't read this BEFORE the fact...But y'all are ALWAYS in my prayers!