After Monday's appointment, the last few days have been filled with a lot of tears, a lot of quiet moments, and a lot of "what are we going to do now" moments. We are literally at a stand still and the clock is ticking for us to get moving. If there is anyone else out there like me, there is the constant battle between trying to stay busy to keep your mind off the pain and the deep desire to climb into bed and sleep for as long as it takes. I spent a good deal of the night after the news sitting by the toliet feeling so physically nauseous. Never in my life have I been so emotionally stressed that it has literally taken over my body this way. I know that the right thing is to just surrender it to the Lord, but can I please just get an amen to the fact that as much as my mind knows what to do, there is still the very huge part of being human that says, "This hurts and it's going to hurt and I just don't know how to do it."
I really would just love to let this all sink in and just take our time with easing back into life as we "know" it. There are some very first practical steps of this next part of our journey that are causing us to jump into action. The only issue is that we don't know how to jump, where to jump, or have the resources to jump. Hmmm.... sounds like a good time for faith to enter in!
Our lease is up here in about a month. We signed this lease intially as a 6 month temporary place for us to get our feet planted here in Houston, learn more of what is normal for Jackson's condition, and just give ourselves a little bit of a break. It was never intended to be long term.... we truly can't afford it! I gave our 60 days notice to leave and then came our doctors appointment. We didn't expect the news we got. It looks like the hosptial will be much more apart of our life than we would like it to be this next year.
So, we have been relentlessly looking for a place to go. The only issue is that the only places that are truly much cheaper (at least $100 or more less a month) are fairly far from the hospital. We don't feel the need to be right down the street, but we also don't love the idea of being 45 minutes away in knowing that our family and Ava will need to make numerous trips back and forth during Jackson's multiple surgeries this next year.
So, we can't afford the place we have and we can't afford the places that are near. Our health insurance is wonderful but after already feeling the crunch of hitting our ANNUAL out of pocket maximum the last 3 years running and knowing that this next year we will hit that with just Jackson's 1st surgery alone, we are anicipating one huge bill early on in the year. Lord, how do we do this?
We have already sold our furniture, Chris sold his surfboards, and now we are left with a one bedroom apartment and small storage unit. There is nothing left to sell that would really make a dent and yet we have the weight on our shoulders that this fight is not a sprint, it is a lifelong journey. I have tried looking for work, I have even picked up a very tiny part time job. I so badly want to make this work, but the fact is that if there was ever a time that my kids have needed me, this is it.
We need to make a decsion by the end of this week since technically our place is up for grabs as we speak. We know we are not alone in this fight. God has orchestrated an incredible team of people that have surrounded us with such love and support. So, now we are calling on you. We need help. As we contnue to try to not only fight, but to do it the right way, we are asking that you stand with us.
It's not about just people giving. We need your prayers, your advice, and your encouragement. We are at a point where we need God to intervene... like overnight. We pray that as you follow along with us that you would keep us close in your hearts. It's a hard time of year to feel so completley overwhelmed, but life is all about perspective. With the risks we have to take this next year with Jackson's life, we don't want to waste any part of this incredible Christmas season. Please partner with us in any way that you feel able to. If you have ever met Jackson, or have even just followed his story, you know that he has a very special purpose. God knew when He gave him to us, that we would need others to come along and help fight for his story to be shared. We pray that you would consider helping us spread his story and his fight. We weren't meant to crawl under the covers and keep this journey to ourselves. This little man has a story that has to be told. I am brokenhearted and yet so very proud to have a front row seat to his incredible "special heart". Much love to everyone and Merry Christmas Y'all! Tis the season for miracles!