Hello, welcome, and thank you for stopping by to learn a little bit about us, our struggles, our achievements, and our day-to-day lives. Let me introduce you to the family.
This is us:
I’m Jeff, that beautiful woman next to me is my wife, Stacy, and together we are raising our disabled, but remarkable son James. He’s the short one, in case you were wondering. Although this site is about James and his many medical issues, I’d like to take you on a quick journey back to when Stacy and I met and work our way up to James.
How Stacy and I Met
It would be easy to just say that 2 people met, fell in love, and started a family, but where’s the fun in that? This isn’t a Hallmark movie. Stacy and I met in a rather unconventional way. Well, at least it was at the time. On the night of July 15th, 1998, I had just gotten home from a night out with a friend, connected our family laptop to the phone line, and dialed in to AOL to check my email before I went to bed. In case you are too young to have experienced this, back then, when the Internet as we know it today was still relatively young, AOL (America Online) was the largest Internet Service Provider in the United States, and we had to use a modem and a phone line to connect to their services in order to “browse the web”, check email, or message friends. If you only had 1 phone line in your house, like most of us did, and if someone was using the phone, we had to wait until they were done before we could get online. Anyway, while I was checking my email, Stacy was at her house browsing profiles on AOL, happened to come across mine, and decided to send me an Instant Message: “You sound too good to be true”. I replied with “Do I know you?” to which Stacy replied “Do you need to to talk to me?” We chatted online for a few days before we decided to meet in person. To be safe, we each brought a friend and met a local Bakers Square restaurant. I don’t know what it was, but I knew from the moment I first saw her in the parking that she was the one. Two decades later, she still is.
Because Stacy was only 18 (almost 19) when we met and had just completed her first year of college, and I was 22 and was just about to go back to school, we weren’t in a hurry to get married. We dated for 6 years before we finally tied the knot in 2004, and like many newlyweds, we talked about starting a family. We both wanted to have 2 kids, a boy and a girl. It just seemed like the norm. She has an older brother and I have a younger sister. Stacy already had names picked out; Jackson for the boy and Madison for the girl.
The First Pregnancy
When Stacy got pregnant in 2008, we were hit with all of the emotions that I think all first-time parents-to-be go through. We were happy and excited because we were finally starting a family. We were also nervous because we were going to be responsible for this little life. Is it going to be a boy or a girl? Do we want to find out the sex of our baby or do we want to be surprised? Would we be good parents?
The first few gynecology appointments were uneventful. The usual tests and checks… “yep your pregnant, congratulations!” Then things took an unexpected turn. We were asked if we wanted to do a chromosome screening. Stacy was an early childhood special education teacher, so we decided to have the test. Not that it would change anything, but just to see if everything was okay. When the test came back, it indicated that Stacy was at a high risk for having a child with a chromosome abnormality. So we were going to have a child with Down syndrome? Not exactly. Our next option was to have an amniocentesis for further testing. We were warned of the risks because this procedure involved using a long needle to remove amniotic fluid from the uterus. Amniotic fluid is the fluid that surrounds and protects the baby during pregnancy. It contains fetal cells and various proteins. The amniocentesis was performed on November 5 and we received the devastating results two days later. Our son, Jackson, was diagnosed with Trisomy 18, also known as Edwards syndrome. Coincidentally, Jackson’s middle name was Edward. Unlike Down syndrome, which is Trisomy 21, the outlook for babies with Trisomy 18 are grim. The statistics vary, but most babies that have Edwards syndrome do not make it through the pregnancy. Of those that are born alive, only 5% to 10% live to celebrate their 1st birthday. The average lifespan of infants born with Trisomy 18 is 3 days to 2 weeks. If you want to learn more about Trisomy 18, please check out The Trisomy 18 Foundation.
So there we were, expecting our first child, only to have the world come crashing down around us. What were we supposed to do? How did this happen? Why us? Why Jackson? What did we…what did he…do to deserve this? So many questions, but not many answers. We know that that there was nothing we did to cause this, and that there was nothing we could have done to prevent it. We were given the option to continue with the pregnancy or to terminate. How were we supposed to make that decision? The gynecologist’s office referred us to another practice that specialized in high risk pregnancies. They had a higher resolution ultrasound that could provide a better image of Jackson. The ultrasound showed a severely twisted spine and what looked like a hole in his heart. I think at that point we knew what we needed to do, and it was not a decision we took lightly. We didn’t want to say goodbye to our first child. How do you say goodbye to someone who you’ve never met? We would never get a chance to hold him or see what he looks like. We couldn’t stand the thought of him suffering which is why we made the decision we did. I know there are people that are going to read this that will view us as bad people for terminating a pregnancy. But unless you’ve been in our shoes, you can’t judge us. You have no idea how hard this decision was for us. Before we said our final goodbyes, we went to visit the graves of our late relatives to tell them that Jackson will be arriving in heaven soon and to please take care of him until we get there. We didn’t want him to be up there alone. On November 17th, 2008 Jackson was fitted with his wings. His ashes are in a small urn in our living room.
The Second Pregnancy
Shortly after we lost Jackson, Stacy made a comment about how much she enjoyed being pregnant and it didn’t take long for her wish to be granted. By December 23rd, she was pregnant again. Oh boy! Are we ready to go through this again? We were both excited and scared to death. After what we went through with Jackson, was this time going to be different? We decided to hold off telling family and friends about the pregnancy until after we had the chromosome screening. We wanted to make sure this one was healthy and didn’t have any issues like Jackson did before we told anyone.
The holidays were a bit emotional after our loss, so we took a road trip down to Tennessee to get a way for a few days and clear our heads. Nashville has always been our top vacation spot so that’s where we went. There was a tattoo parlor on the corner of Broadway and 3rd in downtown Nashville that we had previously gotten tattoos at and we decided to get memorial tattoos for Jackson. Mine is on my chest; Stacy’s is on her wrist. The light blue ribbon is for Trisomy 18 awareness.
On April 19th, 2009 we finally broke the news that Stacy was pregnant, and we were having a boy. All of the testing came back normal. Ultrasounds looked good. All indications pointed towards a healthy baby boy. After months of praying and wondering if this little guy was going to be okay, we could finally breathe a sigh of relief. We decided to name him James. His middle name would be Jackson, after his brother. The pregnancy went smoothly with no issues. We thought everything was fine, until the night of August 28th, when our world started to crumble once again.
We were having a nice dinner at home just like any other typical night…and then Stacy’s water broke. She quickly ran to the bathroom to get out of her pants and clean up. She noticed what appeared to be meconium in the amniotic fluid, which was a bit of a concern. We quickly packed up the car and she wrapped a towel around her waist so as not to get anything on the leather seats. At the hospital, there was concern that James was in distress, so they ended up doing an emergency C-section. At approximately 12:30 am on August 29th, James was born. When he came out, we waited for a cry that never came. Why isn’t he crying? Is he okay?
The nurses performed the usual tests and checks, and something just wasn’t right so he was sent to the neonatal intensive care unit (NICU) for further evaluation and testing. Meanwhile Stacy and I waited for updates, news, anything. “How is James? Is he okay? What’s wrong?”
James spent the first two months of his life in the NICU. During this time many of our questions were answered. James was hit with a battery of tests and scans to find out what was wrong and what we were dealing with. Some of them came back normal; others were not so good. By the time James was released from the NICU and allowed to go home, this is what we knew:
- James had an in utero stroke during the 1st trimester of pregnancy.
- He had no suck/swallow reflex so he was unable to take breast milk or formula from a bottle or clear his own secretions from his nose or throat.
- They originally inserted a feeding tube through his nose to his stomach as a way to feed him. He later had a surgery to insert a g-tube directly into his stomach.
- Because he was unable to clear his own secretions, James required frequent suctioning to clear his airways.
- James has Factor V Leiden blood clotting disorder.
- The optic nerve in his left eye never fully developed so he has vision issues.
- He doesn’t blink.
- He has a chromosome disorder called 22q11.2 duplication which means he has an extra copy of a small piece of chromosome 22.
- He had reflux and had Fundoplication surgery while in the NICU to prevent this reflux.
- He has quadriplegic cerebral palsy, which affects all 4 limbs.
- He has scoliosis, which is a sideways curvature of the spine.
That is just a brief synopsis of James’ issues. We knew our lives were going to be challenging going forward, but we were determined to make the best of it and give James the best life possible.
If you’ve read this far, you should have a better sense of who we are and what we’ve been through trying to start a family. When we first started out on this ‘journey’ with James, we read anything we could find about other children similar to him. We found several personal sites or blogs about different special needs and/or medical issues (autism, Down syndrome, etc.), but very few that were that were even remotely close to James. We also found that most of those blogs were written by the child’s mother, which makes sense because the mom is usually a child’s primary care giver and stays home while the dad is working. What I hope to do with this site is to inject some thoughts and feelings from a dad’s point of view. Mix in some humor, a dash of inspiration, a sprinkle of education, and a pinch of therapy, and and this could be a good recipe for a blog.
The therapy part is mainly for me. Being the parent of a disabled child is not easy. It can be stressful, emotionally draining, and just plain tiring. As a guy who likes to fix things, it’s sometimes hard for me not being able to fix James. So at times I get upset and angry and that’s where the therapy part comes in. Writing about James and venting when I need to could be a good way for me to get my emotions out and not keep them bottled up.
Thanks for stopping by and I hope you stick around for a while and read some of the other posts and articles. But before you leave this page, you want to see a picture of James, don’t you? Yeah, I thought so! Here is one of his first pictures:
Cute kid, huh? Okay, one more picture before you go. Here is one of the first pics of us as a family. It’s not “the” first family pic, but it’s the first decent one. I don’t think Stacy would be happy with me if I posted one of our first family pics. James is about a month old in this pic:
