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.

Tuesday, June 16, 2009

Fun with Friends and Family!!!!!
My sister and her three boys have been visiting with us for the past few weeks. It has been so much fun to be together and get to know each other better. Her husband finally arrived to spend this last week with us so we all got together for a night of fun. It was so special to all be together, along with several old friends from the past. All together we had 8 couples and 17 children!!! I could not have been any happier!

Alex's Lemonade Stand
Our homeschool co-op did a lemonade stand for the Alex's lemonade stand event. They chose to do it in honor of Jonathan. We spent the day there with all of our friends. Jonathan was so excited to see his friends from school..especially one of his best friends Dakota.

Monday, June 15, 2009

Some pictures from Camp Wapiyapi: I am waiting to get the pictures the kids took and the pictures from their companions. But here are a few of when we dropped the kids off.

The Sweetest Hockey Player Ever.... this is from the last tournament a couple of weeks medal winners!!!

Sunday, June 14, 2009

Its been a while since I have updated this blog. There has been so much going on. Unfortunately, there is so much I can't share. I want to. I want so badly to be able to put words to all that is going on in my life and my heart. Some things are best left unsaid. I am so thankful for all of you who have continued to pray for me and my family and to encourage me with your words even though you have had any idea what has been going on.

I want to tell you that we are ok. Its been an emotional roller coaster these past couple of months. A lot of stretching and growing spiritually. I am sure that as time goes on I will be able to share some of this. One thing is for sure... I am so thankful that God is my solid rock. He is unchanging and always a refuge for my wounded heart. Without him my heart would surely die.

The kids just had an incredible time at camp. The companions they each had could not have been chosen any better. They really touched my kids lives and from what we heard when we picked them up- my kids touched theirs. It brought tears to both of our eyes when we watched the interactions and heard the stories about how our kids "made" the camp, how incredible my kids were, how Jason kept everyone laughing and never stopped smiling. We all cried as we watched the kids and companions cry as they said goodbye. I am so thankful for this camp. I think in the near future these people and this camp will become even more important to my three "cancer" siblings. A lot of the companions are either siblings or survivors themselves. They have walked the road my three have to walk and I pray that somehow the influence of these new friends will make this road a little easier.

It was really hard for me when they came home. I wish there was a way we could live "camp life" all the time. Reality sucks. It really does. Within minutes of getting in the car, Jonathan began his melt downs, Jason began crying and had an outpouring of nastiness, and Josh erupted in anger. They were all so tired. But it was not the only reason for the was just a huge reminder of how living with this horrible disease and its aftermath has affected us all. I keep trying to figure out a way to rescue everyone. To help each person make it through this time unscathed. But I can't. And that is what makes this even harder. Its like watching mass destruction and knowing you are powerless to do anything. It feels like its getting harder and harder for me to cope with Jonathan. Joshua. Jason. and Brittney. I desperately need to be able to point them to the true rock because this mom will never be a rock that can be depended upon. I am crumbling.

I guess the details of the past few weeks don't matter so much. Its the lessons of obedience that really matter. That's what has been so emotionally hard lately. Lots of situations where I needed to obey God despite the outcome. Lots of risks. Lots of consequences. Sometimes following God is not easy. Sometimes you look like a fool. Sometimes God calls you to do something, and you take off in that direction only to have him change your path halfway through making you appear as though you truly didn't hear God right the first time. Sometimes you have to step out and be vulnerable even when the other person is not willing to be. Sometimes you have to stand up for whats right knowing it will cost you...maybe even cost you your siblings, your parents, your friends. Sometimes you have nothing left but knowing you heard God and that you obeyed him. sometimes you have to let go of another person and trust that God is able to rescue them. Sometimes obedience costs all you have.

So that's where I am tonight. Broken. Sad. Hurt. Tired. But totally confident in a God who can do far more than I could imagine.