Everyone has a story to tell; A difficulty overcome, a rough patch in their childhood, an illness or death in the family, a hardship, or something that you may not know when you first meet them, but learn about them as you learn about the richness of who they are as a person. This is the story of a young family whose story is being told right now as they face something none of them ever imagined they would.
Kelsey and James were college sweethearts. Kelsey probably knew from the beginning she wanted to be with James for the rest of her life. It maybe took him a little longer to realize the same about her, but not much. James was a bit of a fish out of water at Clemson University in the heart of the south–he was a Southern California boy, a surfer, cyclist, skier, and avid lacrosse player, but his winning and easy personality won him many friends. Kelsey was a pretty, petite book worm from Tallahassee Florida who loved reading and science. James knew he was smitten when he realized Kelsey could recite more college football stats than he could and she was a passionate sports fan. They both majored in biology, spent a semester abroad together, and after graduation, Kelsey agreed to move back with James to Irvine, CA.
It took a little time for James’ friends to warm up to Kelsey–now she was the fish out of water. But after seeing how much their dear friend loved her and how much she loved him, they accepted her and grew to love her too. A few years later, they got married and James went to law school, eventually opening his own practice. Kelsey got her credentials and became a teacher. Not long after that they got pregnant with their first child and he was born in 2004. They named him James Prentiss after his dad and granddad. Three years after that they welcomed a baby girl Grace Brennan, and their family was complete.
In the fall of 2009, James, ever the athlete, road in a bike race and after months of training and then completing the race, he noticed he was having some muscle spasms that weren’t going away. He thought perhaps it was a pinched nerve but after months of tests, the doctors couldn’t find a reason for it. After slowly eliminating numerous possibilities including Lyme disease and tumors, in 2010, Kelsey and James received the diagnosis of ALS or Lou Gehrig’s Disease. James was 35 at the time.
Although the diagnosis of ALS means an average lifespan of 3-5 years. There is almost no treatment (one drug is in the very early stages) and definitely no cure. At this point medical professionals don’t even know what causes it, but it is a horrifying disease that progressively affects the nervous system eventually leading to complete loss of motor function, although patients’ minds remain unaffected. Some people who have it though can live for decades, like the famous scientist Stephen Hawking. James was extremely young to receive such a diagnosis–most people with ALS are in their 70s, so he and Kelsey were hopeful that his would either progress slowly or even turn out to be a virus that would go away on its own as one doctor presented as a possibility. It seemed for a while this might be the case. James’ symptoms were mild and mostly just annoying and he didn’t really feel any different. But at the end of the summer of 2010 when he was at Legoland with Kelsey and the kids, he realized he couldn’t lift Grace up on his shoulders anymore. Then one day while talking about Tae Kwon Do with Little James, he realized his 6 year old could do a push up but he no longer could.
Still these were symptoms only he noticed. He was still James–he still acted like his old self. He was easy to talk to, funny, gregarious, kind, a generous father and husband, a loving and involved son. He could still ride his bike and walk and play with his kids. He even took Little James on a triumphant multi-mile bike ride including a big hill, with grandma and grandpa following along in the car video-taping the whole way.
But Kelsey and James knew this was the time to make memories. They decided to take family trips and went to Florida and to the Bahamas. Kelsey and James even went back to the Carribbean where they had spent their honeymoon and renewed their vows. They were completely, 100% in this together.
They continued to take trips as a family as his hands began to weaken and he loss the use of them in the summer of 2011. Kelsey began to feed him or put his sunglasses on his face when the sun got too bright without being asked and without missing a beat. On one trip she and James took by themselves they flew up to Napa and she held every glass of wine to his mouth so he could taste them and decide which ones they were going to buy.
In the summer of 2011 James was the proudest dad around as seven year old Little James got his black belt in Tae Kwon Do. Afterwards Little James decided he wanted to take a break from Tae Kwon Do and try lacrosse like his dad. James was having a hard time walking now but could still get around. He couldn’t drive anymore though and he and Kelsey decided he would sell his car and close his law practice that fall. He could no longer type, hold papers, or dial a phone.
As the disease became more aggressive and James needed a wheelchair and oxygen, Kelsey continued teaching and even taking classes at night to get her masters. James’ parents, who live nearby, continue to help out with the kids and along with Kelsey and numerous friends, take turns being with him during the day. Kelsey is now taking time off from her job so she can be with him and the kids all the time.
I know all of this because Kelsey, although technically my cousin, is really like my sister and James is my brother-in-law. John and I and our kids were with them at Legoland when James couldn’t put Grace on his shoulders anymore. John and I joined them at Napa for that wonderful afternoon of wine tasting when I saw such love and devotion between the two of them that there wasn’t a breath that Kelsey wasn’t anticipating from James. We even joined them for what I now see as a heartbreaking celebratory dinner almost two years ago when they came up to San Francisco and got a second opinion from a doctor here who thought there was a possibility James didn’t have ALS, but could instead have some virus that would go away on its own. And you may remember a blog post in January detailing an extended visit from our niece and nephew, Little James and Grace, which was a wonderful treat for all of us, but was also to give their mom and dad some time together to just enjoy each other a little longer.
Recently, Kelsey and James were told he has only a few months left. John and I drove down with the kids this past weekend to celebrate Little James’ eighth birthday and help them out in any way we could. I helped Kelsey clean out James’ closet as she prepares to give away clothes they both know he will never wear again and make room for the myriad of medical equipment he now needs. Her prerequisite for what clothes of his she would keep was, will Little James want to keep it (like his dad’s many lacrosse jerseys) or does it smell like James. Those things she will keep as long as she can to help her remember and to eventually grieve.
Spending time with them this weekend was wonderful and James is still himself. He is easy to talk to even in the midst of this disease. He wants everyone to feel at ease and not worry about him. We laughed Saturday night when we arrived about so many things. But Sunday was a bad day for him and today was even worse. He may just have a cold or some allergies but he has lost so much of his lung capacity, not to mention the ability to cough or sneeze, that even a cold is very dangerous. I can tell Kelsey is scared and tired and worried about all of them. Although James wasn’t feeling strong enough to join us for Little James’ party yesterday, he was able to watch his son open his present from his dad; It was James’ old Lacrosse stick now engraved with both of their initials.
Please keep our family and especially the Stalter family in your thoughts and prayers as they deal with this horrible disease. Please also consider a donation to the ALS Foundation is you are thinking of charitable giving this year. Thanks for reading.