Post from September 1, 2021 from Chris:

As Jenn and I enter day 12 of a very dark period in our family, we continue to be warmed by the amazing outpouring of support. Words simply can not do justice to how moved and grateful we are.
Through the support, we also feel an obligation to provide updates on Julian and what we are navigating. We may eventually switch to a blog or may continue on this platform and for the immediate really just wanted to share the latest. We do try and respond and weigh in on different posts and / or comments periodically, but candidly between the new chaos and different hats we are all wearing, time has not been as forgiving as we would like and we have some work to do.
This all noted, Julian is fighting and still very early in the assessment phase as experts look to understand exactly what we are up against and how best to approach. In the middle have been surgeries, adjustments to care, steps forward, backward and everywhere in between.
The biggest update so far has been that Tuesday Julian left the ICU in Columbia, South Carolina to go to Shepherd Spinal Center in Atlanta. While we would be with Julian under any conditions, covid allows only one parent to visit and they may not leave which in our case is Jenn. This adds a layer of complexity that adds new challenges that we believe will be worth the disruption to ensure the best care for Julian.
A fitting way to wrap up our first update is with a picture of Julian and Jenn from earlier today. We also want to offer a spiritual reference a friend shared that we find comforting and highly relevant as we start this new path. In sharing, perhaps this may touch someone here just as you continue to touch us.

“And not only this, but we also celebrate in our tribulations, knowing that tribulation brings about perseverance; and perseverance, proven character; and proven character, hope; and hope does not disappoint, because the love of God has been poured out within our hearts through the Holy Spirit who was given to us.”
‭‭Romans‬ ‭5:3-5‬ ‭








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