It’s been a rather emotional week for us. If you’ve followed James’ story for any length of time, you know we’ve had our ups and downs. The past six and a half years have not been easy on Stacy and me, but we’ve learned to just take one day at a time and try not to worry about the future too much. We just don’t know what the future holds for James. Then something happened last week that kind of stopped us in our tracks and made us really start questioning James’ future.
Before I get to the event that sent us into a bit of a funk, I should probably hit the rewind button and go back to the beginning. James was our first full-term pregnancy. We did lose a son in a previous pregnancy, but James was our first child to be born. We went through all of the pre-natal screenings, ultrasounds, etc. with James, and everything seemed like it was a normal pregnancy. It wasn’t until James was born that we knew something was wrong. We barely got a glimpse of him before they whisked him away to the NICU to start figuring out why he was the way that he was. One of the things we were told was that they believed that James had a stroke in utero.
We had to have the doctor repeat what he just said because neither of us thought we heard him correctly. A stroke? We didn’t think that was possible. The doctor said that it’s not that uncommon. Well, it must not be that common because we didn’t know of anyone that had a child that suffered a stroke before he or she was born.
Stacy and I set out to do a little bit of research on in utero strokes and soon realized that it is possible and that it does happen. Our research led us to a blog written by a Jennifer Ortiz whose son, Jude, also suffered a stroke in utero. We found comfort knowing that someone else had gone through the same thing that we were and that we weren’t alone in this. We became friends on Facebook, and we followed Jude’s story while they followed James’. As Jude and James got older, we noticed a lot of similarities between the two of them. It was almost like they were distant brothers.
Unfortunately, Jude’s health started to deteriorate rapidly at the beginning of last week and he passed away last Saturday, April 9th. He was only 7 years old. 7 years, 7 months, and 7 days old, to be exact. 7-7-7. He was almost exactly 1 year older than James, which is why this kind of hit us like a ton of bricks.
Since we’ve become members of this special needs community, we’ve known a few kids that have passed away, but I think Jude’s death hit us the hardest. The fact that James and Jude were so similar has us really questioning James’ mortality. A lot of the thoughts we had suppressed for the past several years made their way back to the surface. How much time does he have left? Are we doing everything we can to give him the best possible life?
We often hear about how short life is and that we should live it to the fullest. We should do as much as we can and enjoy it as much as we can while we’re here. When they say life is short, they are referring to the fact that we’re only on this earth for 75 to 80 years. But what about these kids like Jude and James who are only on this earth for 1/10 of that time. How are we supposed to cram everything life has to offer into that short amount of time? I guess all that we can do is give James as many life experiences as possible, right? We’ll do our best, and hope that it will be enough.
Please say a few prayers for Jude’s family that they can find comfort in knowing that he is now free of all of his medical issues and free from pain. I believe that he, like James, was put on this Earth to teach us a few things. Life is short, and we just don’t know how short life can be; don’t take things for granted; tell your loved ones that you love them every day because you never know if today will be their (or your) last; and be nice to everyone because you don’t know what kind of struggles they may be going through.
I want to end this section with a quote from Jennifer (Jude’s mom) that she wrote in a blog post the night he passed away. Hope she won’t mind.
“Jude was pretty amazing. Without speaking one word he touched thousands. How amazing is that?”
~ Jennifer Ortiz ~
We feel the same way about James. He can’t talk. He can’t walk. He can’t eat by mouth. He can’t do most of the things you and I can do, but somehow he’s managed to touch the lives of so many people. And we’ve met so many amazing people that we would not have met hadn’t it been for James…including Jude and his family.
Jennifer’s entire blog post can be found here if you are interested:
http://cjengo.blogspot.com/2016/04/what-happened-and-our-blessing.html
