A Love Story

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.

 

 

20 comments

  1. Lane – this is an absolutely beautiful and heartbreaking story. I’ve thought about Kelsey and James often since you’ve told us about his disease. Our thoughts are with you and your family. Tearing up at my desk . . .

    • Thanks Will. We are all heartbroken for sure. I’ll let Kelsey know you are thinking about them and we really appreciate your good thoughts. Hope you all are doing well.

  2. Lane, I spoke to your Mother today, and she told me to look at your posting about the weekend with Kelsey and James. She said I would shed a tear, and she was right. I will also be thinking about them and praying for them, and your family. I remember how precious their children are. I will never forget little red-haired, baby Grace lying on the living room floor when Jean passed away. It was such an expression of the cycles of life. Please give my love to them.
    Love and blessings to you and your family.

    • Thank you so much Jennie. What a poignant memory of Grace that is. We all appreciate your kind thoughts through this tragic situation. I will make sure Kelsey and James know you are sending them your love. Thank you again.

  3. Thank you Lane for this so thoughtful story of Kelsey and James. My heart breaks for them. Your Mom keeps us posted on your family and theirs. They are indeed in my prayers.

    • Thanks Wilma. We are all so heartbroken but are trying our best to help them in a very helpless situation. I just wish there was more we could do. I know Kelsey and James appreciate all your thoughts and prayers.

  4. Lane – Thank you so much for sharing this. Wilma has kept me up to date on things, but I must admit that this was difficult to read without crying. Words cannot express my emotions about the situation and I’m not going to attempt trying to write them. Just know that my heart and mind are with the family and will continue to be.

  5. Thank you for sharing this beautiful love story with us. The Iacovella family’s thoughts and prayers are with Kelsey, James, and family.

    • Thank you so much Kim. Our family appreciates all your kind thoughts and prayers. We are doing our best to be strong for Kelsey and James. Thank you again.

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  7. Lane, Thank you so much for posting this. I am a fraternity brother of James from Clemson and only recently found out about his condition. It warms the heart to see how you captured James as the loving father and husband that he has become. I haven’t seen him in over a decade and I’m hurting for my friend. Thank you again for posting this.

    • Hi Chris. So glad you found this. Words can’t express how broken-hearted we all are. James has proven himself to be stronger than anyone could have ever imagined. He is hanging on but everyday is very hard. I will pass your love onto him and Kelsey. Best wishes, Lane

  8. Thank you so much for this wonderful piece. I too am a Fraternity Brother of James, and I feel awful that we have lost touch and I am just learning of this. As a husband and father, this really hit me, and please let James and his entire family know they are in our thoughts. Thanks again.

  9. Oh Lane. This is just beautiful, touching and a perfect tribute to who they are. I don’t know if you remember me. My husband is Jonathan, he is one of James’ friends from Junior High and was in their wedding. Jonathan found this randomly online and it hurt. You did a beautiful job writing this, thank you. You did a lovely job!!! Thank you for being there for Kelsey and for loving her and the their family so much.

    • Hi Amber. I will pass your thoughts onto James and Kelsey. It truly is heartbreaking and I don’t know how James has had the strength to hang on this long. Thanks for writing.

      -Lane

  10. Lane,

    Thank you so much for writing this. I received this from Shannon Smith. I am a friend of James from high school, we played Lacrosse together. He is an amazing man and a great guy. While this is very sad I am happy to hear he is being taken care of with lots of love. Please let him and Kelsey know their family is in my prayers and send my love.

    Jordan May

    • Thanks Jordan. I passed your comments onto Kelsey and James. It is so very sad but somehow they are bearing it. I know they will appreciate your thoughts and prayers.

      -Lane

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