It goes without saying that this update is long over due. I don't think I've posted on here since shortly after James' last open heart surgery in July 2016. A lot has happened. A lot has changed. Our lives, faith, and sanity have been pushed to their absolute limits. But, I want to start out by saying that while this is a very painful and personal post, I hope you will see the light of our Father's grace throughout the journey. I will of course update you on James current state, but this is my story.
They say change is stressful. And it is. Multiply that by what feels like a billion, and you better hope you have your wits about you to handle it. When I say we were hit hard with changes, I mean we were hit HARD. James had just come out of his 4th heart surgery in Edmonton and we had found out that the augmentation had not relieved nearly as much of the pressure as they had hoped. His pulmonary tension which had been over 90mmHg before surgery, had been brought down to 40mmHg (normal levels are 15mmHg and anything above 30 is an issue), but they discovered that his Left Pulmonary Artery was twisted, limiting how far they were able to augment it, and they couldn't get as close to the valve as they would have liked without compromising the valve, which would have required a replacement. By his next follow-up appointment his levels were up over 50 again. At this point the cardiologists in Winnipeg were giving us pamphlets for the Children's Wish Foundation because after his next surgery(s) he will qualify for the program. It's unsettling to learn that the condition that was supposed to be one surgery and done could actually lead us to the place where our son was considered as having a life threatening condition.
Come August, things really started to get hairy for us. Chris had decided it was the right time to move into a larger house. I was happy with our little home, but he was right, we were going to outgrow that space very quickly. Particularly with how active our little guy is! So, we polished up the house, staged it, and with the help of our dear friend Nick, were able to sell our house for a historic 14k higher than any house in our category in that neighbourhood, and after being on the marking for a shocking 21 hours!
And after looking at all the options, while we do love renovations, we opted to move 15 minutes outside the city to a town called Niverville. Chris had grown up in a town nearby and had actually graduated from Niverville High School, so we already had connections in the town and were so impressed by how far our dollar would stretch in this town. But, with our current house selling in such a record time we hadn't even finished getting the building permits for our new house yet. That meant asking my parents VERY NICELY if we could PLEASE stay with them... for 6 months. Fortunately they agreed, and while it wasn't without it's challenges (that's a LOT of people with a LOT of schedules in one house), it was exactly what we needed, or rather exactly what I needed at that time.
And after looking at all the options, while we do love renovations, we opted to move 15 minutes outside the city to a town called Niverville. Chris had grown up in a town nearby and had actually graduated from Niverville High School, so we already had connections in the town and were so impressed by how far our dollar would stretch in this town. But, with our current house selling in such a record time we hadn't even finished getting the building permits for our new house yet. That meant asking my parents VERY NICELY if we could PLEASE stay with them... for 6 months. Fortunately they agreed, and while it wasn't without it's challenges (that's a LOT of people with a LOT of schedules in one house), it was exactly what we needed, or rather exactly what I needed at that time.
However with the move we needed to find a home for our dog Max. There was no space at my parents house and we tried every possible option we had to find someone who would help us out while we were building (I even offered to personally build a fence in my in-laws back yard so he could live with them while we built), but no one could help. We called everyone we could think of. I even contacted ex-boyfriends who I knew were dog lovers! So we were forced to surrender him back to the organization who had rescued him in the first place. It was one of the hardest days of my life. I couldn't stop crying for a week. But, they're a no kill organization so I knew that he WOULD find a new home. In reality, with the amount of after school commitments Chris and I have with work, we're barely home as is. We've been trying to learn to say no more often, but we weren't able to give him the home needed right now anyway. I know that we'll get a puppy again some day, but Max will always have a very special place in my heart.
They say that two of the biggest contributing factors to stress in a marriage are health and finances... Well, to add to our health file, two days after my birthday, I was making pancakes while Chris was getting James ready for the day. All of a sudden I hear a THUD. I run into the room and see James blue in the face because he's crying so hard he hasn't taken his first breath yet. Chris had reached for a diaper and while he did, James had flung himself onto the ground. Neither of us had seen him that active yet because he'd only been out of surgery a couple weeks at this point. Chris felt terrible, but really, this kind of thing happens to a lot of people. We calmed him down, but he still seemed irritable. After a full day of cranky baby and realizing that something really did seem off we decided to take him to Children's Emergency. It's kind of scary when ER nurses recognize you and ask if they should call cardiology when they see you. After waiting hours and hours James had some x-rays done... and then a few more to verify... James had broken his femur. Ok, cast, we can deal with that... nope, because of where the break was he needed to be put into a Spika body cast AND had to go in for day surgery and MORE general anesthetic to have it set. Sigh.... another long night and day at the hospital. But, with the cardiac file that he has they had to keep him under special observation which meant for at least one of the nights we got a private room with windows. Perk? Silver lining at least.
So now our little boy who had been DAYS away from crawling now couldn't completely lie down without the cast digging into his back (which meant he didn't sleep), sit up without a million pillows propping him up, or really move. You couldn't put him down anywhere. He had to be carried basically at all times. You couldn't put a normal diaper on him, you had to wedge it up inside the cast, wrap a larger one over top of the cast, and pray he didn't explode. We couldn't give him a proper bath, and none of his pants fit, so we had to buy 18 month pants to fit over top of his cast (he was only 6 months). James is a very determined little boy though and before those LONG 10 weeks were over he had figured out how to roll over by throwing his weight into the cast, and dragged around the cast like a zombie. His upper body strength REALLY improved lol.
As for financial stress, well, there's the selling/buying a house business, but I also hadn't received any of my maternity or parental benefit from E.I. ... that I had applied for in November 2015. This was a LONG, painful battle that dragged on and on, after dozens and dozens of calls, and even contacting my MP who did nothing to help us, we got our benefits in April 2017. Yes, April 2017. Sigh. So while all this was happening we had that nagging at the back of our heads too.
So now our little boy who had been DAYS away from crawling now couldn't completely lie down without the cast digging into his back (which meant he didn't sleep), sit up without a million pillows propping him up, or really move. You couldn't put him down anywhere. He had to be carried basically at all times. You couldn't put a normal diaper on him, you had to wedge it up inside the cast, wrap a larger one over top of the cast, and pray he didn't explode. We couldn't give him a proper bath, and none of his pants fit, so we had to buy 18 month pants to fit over top of his cast (he was only 6 months). James is a very determined little boy though and before those LONG 10 weeks were over he had figured out how to roll over by throwing his weight into the cast, and dragged around the cast like a zombie. His upper body strength REALLY improved lol.
As for financial stress, well, there's the selling/buying a house business, but I also hadn't received any of my maternity or parental benefit from E.I. ... that I had applied for in November 2015. This was a LONG, painful battle that dragged on and on, after dozens and dozens of calls, and even contacting my MP who did nothing to help us, we got our benefits in April 2017. Yes, April 2017. Sigh. So while all this was happening we had that nagging at the back of our heads too.
And their were more changes still! I had accepted a job offer which was a really big deal because in my field of work, they're very hard to come by, particularly permanent contract. But it meant I had to leave my baby when he was only 7 months old. At this point I felt like I had spent more time in the hospital than I had as a mother. It was a very difficult decision because I desperately wanted to be a stay at home mom, but with the financial pressure of building a new house, that just wasn't going to be my reality. Every day I would cry as I drove to work. I felt like I was the worst mother in the world and I was devastated that I was going to miss so many firsts... so many mile stones.
All of these changes, all of these stressors, plus having lived through the trauma of almost seeing my son die, twice, had put me in a very vulnerable spot. I had no defences left. There was just nothing there. I had severely limited my contact with other people as I was in survival mode. There were a couple of personal conflicts that came up with people I had trusted that had completely devastated me, and it was in the midst of this perfect storm of emotional chaos that I finally lost it and lost myself.
I truly felt that I was garbage, worthless, and that everything was my fault. Was this rational thought, of course not. But with everything that had been going on (because all that stuff you just read... happened in the span of about 1-2 months) I fell apart. I didn't know how to fix anything and it seemed I was only making things worse... and while I knew I could never take my own life, I didn't want to stop someone else from doing that for me. For 3 weeks I drove around without a seatbelt, PRAYING that someone would kill me. I didn't want to live. Chris would be better off without me, the people I had unintentionally hurt would be so much happier if I wasn't messing up things, and James could be with a mom would be so much better than me. I had panic attacks. I would hyperventilate, shake, sob uncontrollably. I was in so much pain. What I experienced from the months of August-December I wouldn't wish on my worst enemy. I had depression, and unknowingly, was also suffering from PTSD. But the PTSD wasn't just with James and medical situations, there were specific scenarios that would trigger me and I would lose it. I wanted to be dead.
Fortunately, my story doesn't end here. I promised you hope, and grace, and that's exactly what I had been given. Because throughout this whole time three people had my back, talked me off of some scary edges, and helped me find my way back. Chris - my husband, my love, my best friend, my soulmate. Julie - my best girl-friend. Mom - my rock. They never gave up on me. They held on with me and helped me find the help I needed to heal. They supported me and loved me. Quite frankly, they're the reason I'm still alive. And I truly mean that. They saved my life.
I'll be honest, I was mad at God. Why was he doing this to me? What did I do that was so terrible that I would deserve this?! Why did he abandon me? There were no breaks. It was just pain and trials upon pain and trials. I know they say that you're as strong as you need to be in the moment or that God won't let you be tested beyond what you can bear.... but I was definitely NOT strong enough and what I could bear was somewhere back around the FIRST open heart surgery. This I couldn't manage. But God doesn't say that it's what you can bear alone. I didn't realize it at the time, but moving in with my parents during those crucial 6 months gave me extra support with James, and the emotional support of my mom that gave me little moments of rest when my world was falling apart. In my darkest moments, when I had no love to give, Chris quietly, and firmly held me in his arms and waited for me to get better. And Julie... one text and that girl is right by my side, without fail. We don't even have to say anything. We'll just hug while she lets me cry. They were Jesus to me during my darkest moments. They were the loving arms of my heavenly Father. I didn't see it in the moment because I had lost sight of the light, but He was there. He hadn't left me.
Spring is a time for renewal, and it most certainly was that for us this year. We moved into our new home and are loving it. Chris was able to get a new, better paying job. The EI FINALLY came through, one week before our house possession (allowing us to cover closing costs!). James is growing like a weed, has SO much personality (he's a total ham!) and got GOOD NEWS at his last cardiology appointment. In December his pulmonary pressure was sitting around 56mmHg at rest (he was sedated) but in April his elevated rate when he was upset (they didn't sedate him this time) was peaking at 50mmHg! That's not normal from what I understand. From everything we've been told, pulmonary pressure either stays the same, or gets worse... so I don't know if I just misunderstood something or something crazy is going on, but either way I'll take it. His report was so good, we don't even have to go back for another echocardiogram for 6 months! Considering we had been preparing for another surgery this year, this is extremely good news!
And that's where we are. It's been a long and hard road for us, but God IS faithful (even when you're mad at him... ps - I'm still mad at him for putting us through this. I would have preferred NOT being tested like this lol). Now that things are starting to settle for us, I'll probably up-date the blog, just for fun, but I knew I needed to post this first.