facebook post from Jenn on November 24, 2021

It’s been a busy week! We have been enjoying our new found freedom of getting “push passes “ to take the kids out of Shepherd’s to do normal things like going out to dinner. It’s good for us to be able to re-enter the world slowly. Next week is going to be a huge adjustment for Julian and I. I think it will be good but we will definitely have to find our new schedule that works the best as we become a family of 5 again while continuing Julian’s therapies. I am trying to cram as much knowledge as I can in these last few days so that I can best help Julian. It is quite a steep learning curve and just pray that I have it down pack. We do 2 weekends of me taking full care of Julian before we leave. Last weekend was my first and we think we did pretty good. We had no major issues and I didn’t have to call for hell so that’s a win. We will do our second weekend after thanksgiving and then we go home on Tuesday. I can’t believe the time has come to end this chapter. Some days I’m discouraged by the slow progress, but I sat and watched old videos and pictures from the beginning of this journey and that’s when I can see how much he truly has come. He is a trooper and his goal is to walk and my goal is to provide him with all the right people and equipment to make that dream come true. Science is amazing with what we can do and we have seen new research coming out recently! I believe in my heart that SCI “cures” are on the horizon. Julian is so young that I believe in his life and hopefully sooner rather than later, other adjunct therapies will exist to make the quality of life better for these patients. Until then, we are all in. I’m taking everything in and we will find the keep putting in the work. I’m sure Lindsay (our OT) will get lots of texts from me in the future . I wish I could bring her home with us but hopefully we will get some visits when we come back to Atlanta. She made a funny but true diagnosis for Julian. He has FOMO- Fear of missing out . Always likes to be in the know and observes everything around him in the gym. This week we also had a fundraiser for Julian. Thank you to everyone that participated. It was my first time being in real clothes in months. It was good getting to see everyone. One of the other moms on the floor helped look after Julian while I was gone. I am going to miss some of these families so much, but know they will be our forever friends, bonded by our children's tragedies. We got to have some visits and hugs from family also this week, and we are looking forward to spending the day tomorrow with our family. The next few days will be a whirlwind as we rap up our stay here. I'm trying to document with pictures some of our favorite peoples. In these, we have Cheryl, our most beloved counselor. She sees all the kids and parents since covid. She has been wonderful for Julian, and we will continue to keep in touch with her. She has a special way of helping them, and I will be eternally grateful to her for helping Julian's mental state with this injury. We have seen Quinn (room next door) get so much better and he went home this week as well. This really is the longest marathon and thankful of everyone who has been a part of it. My prayer for the next week is that Julian does good transitioning home. I pray he is welcomed back to his "old life" with open arms. I think he needs some "normal" with home and friends that can give him a push to keep going. I bet the motivation from his friends will be just what he needs to energize him to keep pushing at home. I hope everyone has a wonderful Thanksgiving. I will be giving thanks for so much that I took for granted months ago.
Also, we worked out the appropriate "loaner " chair until ours is ready. I wasn't above pleading and begging







Comments

Post a Comment

Popular posts from this blog

Mamma Bear

Image
Mamma Bear moment.  It’s sad that you feel like you must protect your child from words from important people who could have the ability to drastically make life exponentially harder for my son who tragically was injured in a car accident 3 years ago and was paralyzed from the neck down.  Life isn’t easy for him or us that take care of his every need.  In the heels of a terrible plane crash, to tell the world it was due to a program through the FAA that helps include people with physical disabilities was highly misleading to a population that won’t know or investigate the truth of the program or the cause of the accident.  Words are powerful and some’s carry more weight than others.  Implying that hiring people with a physical disability will compromises safety will increase the harmful stigma of a population that is already vulnerable and has the highest unemployment rates in America. Ever since Julian was hurt, we have tried to convince...
Read more
Image
 catching up on old info: 3 YEARS! Hard to believe we were thrust into this world 3 years ago. Many of you know how hard this year has been. Reality set in. Days are hard and life isn’t easy and I could write a book on all the ways the system isn’t there to help support and protect those individuals with disabilities. It makes me sad to think of all those less fortunate than Julian that don’t have loved ones advocating for them, and making sure they have the best life despite the circumstances. Despite what life has given Julian, his loving personality is always present even on the hardest days like today. Trauma is real and heavy, that day will always be so vivid in our mind. Thankful for all the messages sending love especially on tough days. It really does help get through the days. Last week Julian had an opportunity to go to a week camp for SCI in Rhode island put on by Empower SCI just for teenagers. Julian has never known a stranger and loved getting to meet new fr...
Read more

25 years!

Image
 July 31, 2024 Hard to believe it's been 25 years since Chris and I got married.  We were such babies back then and had no idea the ride we would embark on since that day.  I feel like we've lived more life in 25 years than some do in a lifetime.  We have moved 7 times, 4 different states, and 2 different countries.  Each time a new adventure that we looked forward to the new experiences and people we would meet.  We both put ourselves back to school to get our master's degrees while navigating life with work and children.  We had 3 beautiful children that I've been proud to watch grow.  Being a mom is one of my most favorite things and could not be happier with the family we have created together.  We've also experienced such profound loss and grief mixed in through the years, especially the last 5.  Some days I wonder how we are still standing, but we continue to push through and make it through another day always hoping that things wi...
Read more