December 24, 2015

One Last Christmas?

It's Christmas Eve, we spent time at the VA with Daron & his parents to open gifts. I can't help but wonder if this will be the last Christmas that we will get to spend with Daron here on earth. I'm sure that sounds insensitive & crazy, but it's how I feel. I mean, how else am I supposed to feel given what the doctors have told me recently?? Am I supposed to pretend that he will be here next year at this time when no one is certain of that? I know that God knows how all of this is going to end & when......but sometimes it is hard to remember that, let alone trust it. I know that God will get us through this time of year as He always has. I know that He will give us the grace & peace to get through this time of year as He always has. 

I pray that each of you have a blessed Christmas & a Happy New Year. May 2016 be a wonderful year for all of you & may God bless you beyond your wildest dreams. 

December 20, 2015

Palliative Care & Blessings

Daron has been officially put into Palliative Care while at the VA nursing facility in Battle Creek. For those who don't know, Palliative Care is the step before Hospice Care. This means that he will be receiving weekly visits from the P.A to track his decline, change any medications & to make sure he is staying comfortable through this phase.

Even though the P.A has said that she is estimating a 6 month timeframe, the VA requires that he be certified by his doctor in order to be placed under Hospice Care. There are 5 qualifications that Daron has to meet in order to be certified for Hospice & Daron only qualifies for 2 of them at this point. With him being seen on a weekly basis now, the P.A will be able to recommend to the doctor that he be certifed as soon as he fully qualifies.

I am glad that I have more answers & that Daron will be getting more care now that he is under Palliative Care. So that is a blessing in itself. Another blessing came from an anonymous person at my church in the form of a gift card at the exact moment I needed it.

Another blessing came from the teaching staff at the school I work at. I have been blessed to have such wonderful coworkers. I informed them as to what is going on in my life ; they have all been so supportive. I really enjoy going to work everyday because it helps to keep my mind off eveything. Then they blessed me with an unexpected gift card. I love my job & the staff I work with!!

**Please continue to pray for for strength for all of us as we continue on this journey.
**Please pray for safe travels as we go visit Daron as much as we can.
**Please pray that Taylor & I will stay in good health so we can visit Daron.

Thank you all again so much for all of your prayers & support as we go through this. We are truly humbled & blessed to have such wonderful friends & family encouraging us through this journey!

December 8, 2015

6 Months

June 2015 - 6 months ago
It's crazy how far away 6 months ago feels to me. The school year had just ended & summer vacation was starting. I was getting ready to help serve in the kitchen at Lincoln Lake Camp for a week. Taylor was getting ready to go to camp. I was finishing up some VBS prep work. It feels like it's been a year since all of that happened.

A lot can change in 6 months.

December 2, 2015
My in-laws & I went to a care conference for Daron to discuss how much things have changed for him in the last few months. We went over his dietary changes (nectar thick liquid diet & spoon fed by a staff member), his wheelchair changes (no longer able to get around on his own in an electric wheelchair), vision changes (waiting to be referred to a low vision clinic to see the extent of vision loss), etc. We also discussed his new diagnosis & what it means.

His new diagnosis is Malignant MS - a very rare, very aggressive form of MS. It's so rare that the staff in Battle Creek aren't fully sure what Daron is going to experience as time passes. We are all at square one with this. I don't know if that's a good thing or a bad thing at this point.

This form of MS also means that he will progress at a rate we aren't sure of. I asked the doctor if they know how long he might have (not wanting them to play God, but give a best estimate)......the doctors response was  6 months - more or less. The doctor said it was less likely he would still be here in a year, but again they don't understand this form of MS. That was tough to hear & honestly, I still haven't fully processed all of the ramifications.

Could he live beyond 6 months? If that is God's plan for him.

Could he pass away in less then 6 months? If that is God's plan for him.

God is in total control of this situation & only His plan will play out. Only God knows how this will all end & when. At this point I am no longer asking for Christmas. I am asking God to let His plan play out in Daron's life & that He not let Daron suffer. I felt that asking to make it past a specific date was like putting God in a box. If God's plan is for Daron to pass before Christmas, I don't want to feel like God let me down. When Daron passes, I want to know that was the date/time that God saw as his time to enter Heaven before Daron was even born. I want to know that God's plan for Daron's life reached the perfect outcome & was complete.

For myself, Taylor, my extended family & Daron's extended family....this might be our last Christmas with him here on earth. But we know that we will have an eternity of Christmases with him in Heaven. Does that thought make any of this knowledge any easier? To be completely honest.....not all the time. It's tough to know that your loved ones life will end sooner then you think it should. It is easier to think of the eternal side because we know he won't be in pain anymore. We know that he will be happy & at peace. We also know that it won't seem like a lot of time has passed to him when we join him in Heaven. That is the truth that we hold onto during this time. That is what gives us the strength to keep going every day. God is the only place we can find true peace & comfort through this difficult time in our lives.

How can you help us through this?
---Pray for strength......emotional, spiritual, physical & mental. The coming days/weeks/months will be difficult & we covet your prayers through it.
---Pray for decisions that will have to be made. I have a meeting to discuss end of life decisions tomorrow (12/9/15).

Thank you to all who have been beside us along this journey. I am truly grateful & blessed to be surrounded by so many wonderful friends & family members, especially now. May God bless each one of you as you have blessed us!

Struggles

I have been struggling to.... ....get out of bed in the morning. ....be a good mom. ....take care of my house. ....take care of myself. ...