Wooooosh. We arrived home one week ago, and now we are packing to head back for two weeks of therapy. The last days at Shepherd were surreal. We met so many fabulous people and learned volumes which hopefully we can pass on throughout our journey into this next phase. Trying to tie up loose ends, saying goodbye to so many people. Patients which we might never see again, but have shared such a life changing event with that we will never forget them. Hopefully, in this time of social media, texting and emails we will find a way to drop a line and check in to see everyone’s progress. Peer support is what gets everyone through this. We rely on each other so much. During those last days we made sure to make it to the newer patients to show them that it will get better, and life is not over. It takes time, as Jared will gladly tell you. A lot of time…….There will be soooooo much frustration, exhaustion, tears….SCI doesn’t just affect patients, it affects families.
This week was working on Jared’s new routine, meeting his new team of doctors, seeing old friends, and trying to relax……just a little…..Friday we met our FABULOUS new Urologist, Tuesday our new PCP and today, our new FABULOUS physiatrist. We are very happy we have a great team of doctors! Jared is looking forward to starting rehab locally at the Hospital for Special Care in New Britain once we return from Shepherd. Three times a week for 2-3 hours a day. 25 miles from our house…one way. How exactly we will fit this into our schedule is a whole other story…..
Jared’s friends have not stopped visiting and it has been really great to see everyone. John and I have been busy working on the house modifications, insurance, Medicaid, grants, loans, driving assessments for Jared, car shopping etc. and I have managed to get into work a few days too. Jared’s bed is too soft, his shower chair is too hard and the carpet in the apartment is hard to roll on with his wheelchair. Adjustments…..its all about adjustments.
Adjusting to life at home has not been easy. Unfortunately, Jared got another urinary tract infection and he’s been reflexing a lot at night, so he has to wear a condom catheter. This means he cannot cath himself because the condom catheter is difficult to remove and replace. So, John has not been sleeping much. We try to get Jared into bed at 10pm, then he caths at 2am and again at 6am. John is the most amazing father I have ever witnessed. He cares for Jared like no other. I am perfectly willing to rotate the nightly shift, but John and Jared are father and son, and have a good routine going. They are alike in personality and idiosyncrasies, and it just works better. This too shall pass, and each day will get better, and Jared will get stronger and require much less intervention on our part. In SCI, the first year is the worst. The body is still in shock and things don’t regulate until after a year. We have to be patient and keep our eye on the goal.
Jared has done very well with his transfers into our Honda Element. He requires minimal assistance and his wheelchair fits perfectly in the back, and we still have room for all four of us in the car. Why Honda stopped making that car, I will never understand. I know it was economics, but if they had just marketed it differently. We are looking into buying Jared a converted Element as well. There is a company out in Michigan that converts Elements and they are pretty cool. Wheelchair ramp and seating for two besides the driver. I think Jared has come to the realization that it will be easier for him in the long run if he has a car with a ramp. His shoulders are precious now, and some things just aren’t worth the effort. Doing transfers takes a huge amount of effort. Someday I will start making videos of Jared’s daily journey so everyone can see what I see.
Yesterday we visited WPI, where Jared goes to school. The fraternity had banners up with the “GrierStrong” logo, which was pretty amazing. We are truly blessed to have such a great group of guys supporting Jared. We also had a meeting with the Office of Disabilities, Residential Services, Department of Health Services, Academic Advising and Financial Services. It’s early yet, but we want to know what we can expect when Jared returns to school. There will be a lot of planning but we are still aiming for the goal. They have had students like Jared who had a full time care person living with them in the dorm to be available for emergencies as well as daily care. Nice idea, just not monetarily a realistic thing for us right now. However, who knows, we will continue to keep our eye on the goal…..
It has taken me three days to write this post…..yesterday I chilled on the tractor for two hours brush hogging. It’s amazing how good that feels 🙂 John weed wacked for two hours as well. He will be buried with that thing…
Talk soon….on our way to Atlanta….