This is Andrew’s story from my point of view. I shared this with the Disability Employee Resource Group at work and thought I would share with you all for a long overdue update. I am going to talk about our life prior to his accident, his injury, our journey so far and where we are today.

Growing up, Andrew was very active. He loves the outdoors, and he would climb on everything he could. He also enjoyed swimming, kayaking, football, archery and going for long walks in the woods, to name a few things. Andrew was living on his own and was working for an electrician prior to the accident. The first picture attached of Andrew (21 years old at the time) and my daughter, Abby (22), was taken one day before the accident on December 25th, 2021.

Everything changed in the blink of an eye on the afternoon of December 26th. Andrew and Abby both spent the night with me after we celebrated the holiday, and they went their separate ways the next afternoon. After a few hours, I got a call from one of Andrew’s friends that Andrew had fallen off a roof 30 feet and he was conscious, but he couldn't feel his legs. I rushed to meet them at the hospital to many doctors and nurses assisting and assessing Andrew in the resuscitation unit. We were in shock to say the least. In the next few hours and days, we found out that Andrew had a complete spinal cord injury, which means a total loss of function and sensation below the injury site. He had a complete sever at the 11th thoracic vertebrae and his level of injury is T8 which means that is where some of the loss of sensation starts – around his abdomen area - and resulted in paraplegia. He will never walk again. It was all very overwhelming and hard to believe.

Andrew was in the hospital for a little over a week where they performed surgery on his spine, extended because he had to get a chest tube put in for a few days. During this time, they assisted him with sitting up and used a lift to move him into a chair for a different view outside of the room’s windows.

Andrew was then moved into a rehabilitation unit, one of 14 in the nation that specializes in SCI right down the road from where we lived (Sheltering Arms Institute) and spent about two weeks learning how to sit up on his own (without using his back in the same way, parts of his abdomen and his legs), get dressed, shower, cook, get around on his temporary wheelchair, and lots of physical therapy as well as some mental therapy. Then he was released, and we were on our own quite suddenly or at least felt like that for a while! It was a huge adjustment and we both needed a lot of support – him from me and me from my family and friends. I am so thankful that I had an awesome relationship with both of my children before the accident because it was a good foundation for us all to grow even closer and share our lives more completely through this situation that no one ever wants to find themselves in.

Unfortunately, after a couple weeks we went back to the Emergency Room for another issue, and they discovered with a scan that the hardware in his back moved. He had to have another back surgery which left him in the hospital for another week. He tested positive for COVID so he couldn’t have any visitors. It was rough for both of us, but we made it through. When he came home again, we continued to take him to physical therapy a couple times a week to help him rebuild his strength. He had to wear a back brace for several months this time around so his back could heal better.

We learned so much during these first few months and continue to learn almost two years later. Here are a few items I would like to share to hopefully help you and/or others.

1.     We lean on family and friends!

a.    So many people donated to help us with medical and other expenses. We are so thankful for this! It helped ease the burden of worrying about that on top of everything else we were working through.

b.    My daughter, Abby, who is a high school math teacher, thankfully lives only a couple hours away and she was able to take some time off here and there to be with us as much as she could along with her boyfriend, Tre’. The rest of my family doesn’t live close, but my mom and one of my sisters were able to visit a couple months after the accident, and this helped as they treated him the same as they did before his injury. It was something that Andrew was worried about, understandably so. One of my best friends from high school also visited during those first couple of months which was really nice for all of us.

c.    My new manager (I accepted a different role where I work right before Andrew’s accident), my new team and former teammates were so supportive and helpful. I can’t imagine what that time would have been like if I had to worry about my career while working through everything Andrew was going through. Thankfully, I didn’t have to ever feel that way!

2.     We utilize resources available through my work.

a.    Shortly after the injury, a Personal Health Advisor through my insurance reached out to us. They provide one-on-one support that assists with finding resources, coordination of care and services, and navigating the healthcare system.

i.  Our personal advisor helped us find in-home care in the first few months when I went back to work while Andrew was still in a back brace and additional assistance was needed. She worked directly with the company to help me process the insurance quickly.

ii.  She coordinated getting specialized equipment for us and attaining approvals for the wheelchair to be completed faster. Did you know that customized wheelchairs take months to make and receive? Our advisor helped with reducing this time.

iii.  She helped us keep track of our deductibles and assisted us with any questions about what insurance covers.

b.    Counseling – we take advantage of the therapy we can access to help us through. Outside listeners has been invaluable and the recommendations they offer have assisted us immensely.

3.     We advocate. We are not afraid to ask for a second opinion and ask for more help when the doctors aren’t sure what the next steps are. We use our network at United Spinal Association for assistance, too.

4.     We are passionate about accessibility.

a.    I quickly moved from a third story non-accessible place to one that has elevators while Andrew was in the hospital and rehabilitation.

b.    Driving – Andrew had to go through driver training again, this time using hand controls, so he could get his license and gain some independence back. This can be costly and/or have a long waiting period to receive, so those who do not have access to the resources we did sometimes do not have the option to get this level of independence back.

c.    Sidewalks – as a runner, this is something I was passionate about before and even more so now. One curb can make a huge difference. I am writing to the County Department of Public Works and I am part of a working group through United Spinal Association to drive change.

d.    Access Aisles and accessible spaces – access aisles are the white lined spaces beside accessible spaces to allow room for accessible vans and for people like Andrew who need the extra room to put their wheelchair together next to their car. We’ve seen situations and been personally affected when people park in these spaces, so we try to educate others as we can.

5.     We care about Disability Etiquette.

a.    This guide offers tips on interacting with people with disabilities.

b.    Be aware of the terminology we use. For example, we use “accessible spaces” versus “handicapped spaces”. See here for more information about the history of the word. Keep in mind it is up to an individual with a disability what they are comfortable with.

6.     We’ve learned more about spinal cord injuries (SCIs). Approximately 12,500 new SCIs happen each year, which is about 40 out of every million people. Incomplete injuries are more common than complete, which means the spinal cord is partially damaged, allowing some level of function and sensation to remain below the injury site. Most injuries happen to people between the ages of 16 and 30, and the average age of someone living with an SCI is 43.

Where are we now?

-       We are living life!

o    Andrew (now 23) has gained a lot of independence. He does almost everything on his own and values our time together. He invests time in his health and plans our meals, oftentimes making dinner with little or no help from me. I love that! He also will drive down to Abby’s to spend time with her as her apartment is accessible. I am so thankful that they are close!

o    Some days are harder than others as there are ongoing medical issues we continue to try to find answers for. Encouragement is so important daily!

o    I make sure I take time for self-care and encourage Andrew to do the same.

o    We are making plans for the future including airline travel and the possibility of finding a house that provides more accessibility.

-       Getting support and giving back!

o    I attended a weekly group through United Spinal Association “Empowering Parental Caregivers” and now I help lead it monthly.

o    I am part of Advocacy Working Groups through United Spinal Association for various items such as Outdoor Access and Accessible Parking.

Thank you again for your time and support and please reach out if you have any questions or want further information.