Riding the waves

Not much is linear here. There are huge leaps and then minor gains, setbacks that wipe Jake out for days. It is really weird to have this different body that doesn't perform the same as it used to or how the rest of us do. This week we rode many waves - ups and downs.

On Monday, Jake finally felt totally back to himself after an infection. He had a few procedures done on Monday morning, including removing his tracheostomy. His toes and legs moved for the first time. It felt so good to see so much goodness! That afternoon, we got a call that our cat was injured and needed to be put down. Talk about highs and lows - after a great day, we needed up sharing the news with our kids and tried our best to be there for each one in their own grief of losing a pet. George was a good cat! Thank you to our sweet neighbors who have taken such great care of our cats - we are sad that Felix is alone now but know that he is getting lots of love from our neighbors.

On Tuesday, we met with a team at Craig to talk through our house and what modifications are needed. It is so hard to plan and their advice is that need to plan as if Jake is coming home today in the condition he is. Thankfully, our house is set up really great - the only thing that needs to be addressed is the bathroom to make it a roll-in shower, removing carpet in bedrooms, figuring out a lift to get Jake downstairs into our kids' bedrooms, and maybe a kitchen remodel - I say that with lightness compared to what most people are facing when it comes to going home. Many people are forced to sell their houses and look for something with wider door frames and less stairs. I am not as much concerned about the inside of our house, but more the exterior and yard - our steep and slippery driveway, the steep hills all around our yard, the amount of work it takes to do the snow removal and mowing. I know I can handle it, I like doing outdoor things - just going to have to embrace a new role at home. And lean on the help of others until I can get into a groove and our kids can help more. I am also keeping all of this with open hands for God to move - we don't know how Jake will come home or what he will need. His power chair can lift up to be higher so he may be able to cook at the higher counter tops - but we may find out that a manual chair is easier inside because it is much smaller - maybe he will be on crutches or walker - maybe his hands won't come back and cooking requires many adaptations...we only know what Jake was like yesterday and what he is like at this moment - pretty hard to feel confident in a home remodel with that as our reality. 

Another piece moving in the background is vehicles - again we don't know what Jake will need to drive, there are options for hands control and we know that even if he didn't improve any more than today, he can drive. We have seen different vans and trucks with options - from power chairs that can enter through a ramp and into the drivers seat, to cranes that lift a manual chair into the box of a truck while the drivers seat comes down to the level of the manual chair. Modifying an existing car (which we have worked so hard to pay off and enjoy no car loans) costs $30,000-$40,000 - pretty much more than our cars are worth. Buying a new vehicle with modifications can be $80,000 - $100,000 - for pretty much the same van we own but with all the tech and modifications. I know that it will all work out, but it is wild to me how much it all costs. I am really putting aside the fear of expenses and just trusting, knowing that we have already witnessed how amazing God provides. Through so many generous donations, we are so thankful to be able to use those funds for the future. Seems like such a first world problem to be concerned about a vehicle, but having transportation is essential where we live.

Those are just small waves that hit us - the house and car stuff - they are so minor compared to the big waves that hit us. The giant emotional responses because we are all tired and nothing feels normal. The waking up every morning reminding myself where we are and why we are here. Seeing Jake - so skinny - so thin - so different. The waves of reality of what this injury does to his body. Sitting in classes where we are looking at slides and hearing lectures on skin, bladder, bowels, everything that is impacted downstream of his injury. Every creased seam of a shirt or too tight of a shoe can lead to a pressure sore, anything more than a few minutes in the sun can lead to splotchy hyper sensitive over-heating, learning about Autonomic Dysreflexia (AD) - seriously google it and learn about it - which seems to happen to most people with SCIs at Jake's level but all have different symptoms that can lead to hospitalization and even death. 

We learn about all these things - and then I try to think how we will return back to our world. How can we spend entire days at baseball fields where there isn't an accessible restroom anywhere, no shade to keep Jake cool, terrain that would be challenging in a wheelchair to navigate, unaccessible parking? How do we expect to get out of the house in time for work when it takes hours to get Jake transferred into the commode chair for showering and bowel program, back to bed to be dressed, into chair, a meal, another transfer into a vehicle, another transfer back into a chair - and somehow there on time? It is a workout for all of us to get through it. 

I know I am spending too much time in the future trying to figure it all out - I talk to others here and we are all doing it, spinning our wheels trying to feel some sense of control in a completely uncontrollable situation. We all remind ourselves to breathe and not worry - we hug one another and dry each others' tears, we take turns for the highs and lows, we give space to one another, I am so thankful for the other women who are here with me. The wives and moms of patients who are feeding their loved ones at the next table while I spill Jake's burrito bowl all over him. The friends who meet me in the hallways and just know. The nurses who take our kids aside to play hide and seek and squirt syringes of water at each other. The doctor who plays football with our boys. The security guard who gives our kids grace when they are racing wheelchairs in the hallway. The workers in the bistro who know Matthias' grilled cheese order and always greet us with smiles and grace. The other kids who just always seem to find us - we always have an extra kid or 4 with us, who keep being kids even when each day is spent at a hospital. The therapists who work with Jake and train us, who engage with our kids and with us - to celebrate every little thing together.

Waves come and go. When Jake first got hurt, Matthias recited a quote that he read in DogMan: "We can't control the wind, but we can adjust our sails." I love that. The waves keep coming - and I am trying my best to ride them with grace, maybe even learn how to sail. We have met a lot of surfers here, there is something special about our friends who we have met that have learned how to ride the waves. They even seek out the big ones, they embrace them knowing it will be a wild ride. 

Prayer requests: 

• Continued improvement for Jake including stamina and endurance, he has been practicing his manual chair and his arms tire out quickly.
• Protection from sickness and infection for him. 
• Continued relationships and deeper friendships with others here, it sure is a blessing to have each other! 
• For our kids: we really need some more structure, please pray that we figure out a better routine for them to have more structure throughout their days - trying to figure out how that looks and what the options are here, please pray for God to open a door for our kids to have other adults in their lives and even some separate space for all of us (living in a small hospital room and tiny apartment are very different for us). 
• I started a new job to work remotely for CLC - please pray that I figure out my own routine of accomplishing work tasks while being with Jake and our kids during the day. 
• I am also needing to get settled into a routine of working out again, and I would love to get back to making meals and cooking but right now that seems daunting - we are all missing regular food - and getting a little tired of bistro cafeteria food - just not sure how to get it all done.
• Discernment on what to plan for and what to wait on - house modifications, etc.