Thursday, June 18, 2009

Here we are Radiology waiting for Jon's MRI. I can't believe we are already 3 cycles into this treatment. Time seems to fly by sometimes. We start this cycle of chemo tonight. I guess you could say we are plugging along. I guess we don't have a choice but to wake up each morning and live the day we are given. Honestly, there are days when I would prefer not to wake up. But by the grace of God we make it through one more day. One more hour. One more minute.

Its been a rough week. Jonathan has entered a manic cycle again. This morning he was awake before 4 am. The melt downs are more frequent and more severe. The mood swings are almost constant. Its scary. I am not sure what we are going to do. The options are hard. Continue to live life the way we are and hope that everyone makes it through in one piece. Find some kind of respite that gets Jonathan out of the house during those high stress times of the day. Consider inpatient hospitalization until they can figure out how to stabilize him. These options scare me. I am not willing to give up yet. I can't relinquish my child to someone else. But still the problem are we all going to live through this and maintain some sanity.

One option that I have found that I am ok with is respite. The problem of respite is money. There is a facility here that Jon has gone to and does really well at. But even though it is on a sliding scale fee, it still amounts to more than I have. His medicaid waiver will pay for some respite but no one in town will take it because the reimbursement rate is so low. I am trying to figure out a way to work out Jon going at least three days a week during the summer to Zach's Place- the center that provides respite. It would probably cost $60 a week but it would be worth the cost if it prevented him from being hospitalized. It would be worth the benefit. The hospital is trying to help us out as well. Please pray with me that God will provide the money for this.

I am afraid that without some relief, our family is going to crumble. I have not felt this unable to cope with Jonathan in so long. It is such a tormenting, desperate feeling to need help and have no way of getting it. No one knows what to do to help him. The drs don't know. Medication is not working. I don't know how to explain it....yesterday, I felt so overwhelmed after 3 meltdowns. I just wanted to feel sorry for myself but I can't. I have to do something about it.

I know that God wants to use all of this for his glory. I know he has our best in mind. I know that his love is perfect and able to cast out my fear. I know all these things. I just need to see it. I am praying for God to open my eyes. I am praying for God to grant me his supernatural strength, his perspecitve, his peace, his patience, and his creativity. I know he will provide. He has to. He has allowed this disease to invade our lives, so I have to believe he has a plan and in his time he will deal with it.
Thank you for joining with us and supporting our family with you love, prayers, and encouragement.

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