I would like to begin this entry by first saying THANK YOU to everyone for your support. We have received many donations over the past six months that have helped Tyson in his recovery. The funds donated contributed directly to Tyson’s in-home physical therapy and in-home nursing expenses, both of which are extremely costly but absolutely mandatory to support Tyson’s road to recovery. Without your help, Tyson would NOT be making this wonderful progress. Additionally, the outpour of love and encouragement from the many of you who’ve reached out or who hold us in your prayers, has all meant so much to us. It’s difficult to put into words just how much of an impact your generosity has made, but please know that you are all responsible for helping Tyson continue to make this unbelievable come-back! Thank you!!
These past few months have continued to be productive ones for us. Tyson is doing well and is maintaining steady progress. He looks really good and healthy. Dr. Horowitz has developed a Lyme protocol for Tyson that seems to be working quite well, as we are witnessing Tyson’s body come back to life. He is on a wonderful supplement regimen that includes lots of vitamins, glutathione, NAC, and some others that again, are all contributing to Tyson’s improvement. During our most recent conference call with Dr. Horowitz, he commented on Tyson’s progress and said, “here, we have a man who has survived something he should not have and is now making tremendous strides in his recovery…we cannot disrupt this treatment plan”. Essentially, whatever we’ve stumbled on in terms of his care, his meds, his supplements, and his therapy cannot change because it is working. There has been NO decline whatsoever and within the past few weeks in particular, he has really made some wonderful breakthroughs in physical therapy.
We are excited to share a few videos that document many points of improvement. I want to preface this with a reminder of what Tyson’s physical condition was last March; he was only able to blink his eyes to communicate and his body was suffering from total body paresis. We also want to mention/introduce our new physical therapist whose name is Siobhan. She is amazing! She is smart, super energetic, encouraging and passionate about what she does. Siobhan trained with Mike for a few weeks to learn Tyson’s case before Mike had to transition to a new set of responsibilities within his company. The first video I’ll share is from the end of February when Mike discovered that Tyson was able to do some wrist extensions. I initially made this video to share Tyson’s progress with Dr. Shroff, so you can hear me say “smile for Geeta!” to Tyson at the end🙂
The next video is great- the day I took this video, Mike and Siobhan had just worked with him in side-lying position to help work on and engage his core. After those sets of exercises, we were about to position him on his back so that we could get his sneakers on and transfer him into his chair. As we were about to move him, we noticed he mouthed to us the word “watch”. So, we all backed up for a second and Tyson began rotating his shoulders back and then forward and even threw in a couple shoulder shrugs! We all were cheering and cracking jokes about Tyson showing off…he flashed us the biggest smile. I love when he does this.
This next one speaks for itself. 💪🏽
This video demonstrates Tyson’s (incredibly) improved neck strength. The movements may seem slight but I’ll remind you that a year ago, his head would have tipped back entirely and the fact that he is able to tuck his chin with the trach in the way is really wonderful! Plus, we like to say that listening to hip-hop is essential for regaining this muscle group 😉
Tyson and I are constantly reminding ourselves of where we were a year ago when he could only blink or eventually only smile on one side of his face and even two years ago when he was SO thin and struggling for every breath. We do this to acknowledge our progress and stay grateful. When Mike first resumed therapy with Tyson after his cardiac arrest, there were times when he would feel a flicker in Tyson’s muscles but Tyson didn’t necessarily feel it or, if he did, wasn’t that impressed with it. What I love now is seeing Tyson’s face light up when he feels new muscle contractions or when those contractions are stronger. THAT is how I know he’s going to be okay. That feeling is addicting and is super motivating! This week, in fact, Siobhan and I had Tyson sitting at the edge of the bed and she put his elbow out to the side and leaned his body weight on it, like a side bend. Then, she guided him up to an upright position. The point is to go through the motions to work on the strength aspect but also to remind his brain how to move his body. After one rep, Tyson lit up and said “I’m doing it! I can feel it”. We are literally building on this every single day. The muscle contractions throughout his body are getting stronger and the ranges are getting bigger. The focus is on the core and the strength will radiate from there. Tyson even felt flickers in his calves and a *baby trace* of a flicker in his foot which is astonishing. The thought is that the first to go will be the last to come back (feet and hands). The therapists and I could tell him every day how strong he’s getting, but it almost doesn’t matter unless he acknowledges it.
Another really wonderful and important thing to point out is the lasting and continuing effects of the stem cells that Tyson has in his body. His last set of injections was over a year and a half ago in December 2014. They don’t reach their peak maturation for 2-5 years so he is still benefiting immensely from them as well as the stem cells from his very first round of treatment in February 2013. That, coupled with the fact that he’s getting the right amount of nutrition and hydration and the constant PT (which sort of directs them where to focus), it’s no wonder he’s making improvements. I know many of you are curious about how we will resume stem cell therapy for Tyson and I assure you, it is a top priority for us and I hope to be able to share some news on that front very soon.
The boys are both doing very well. Calvin will graduate from preschool soon and Abren will turn two next week! They are both really good boys who always want to help and above all, they bring so much joy to me and Tyson. Our little family dynamic is pretty special. On the one hand, it feels like an incredible tragedy that Tyson is in the condition that he’s in. We can’t hear his voice, he can’t participate in a majority of the things that go on in the house on a daily basis, and sure- a part of him is gone…for the moment. I cannot explain the pain that is associated with these facts. Having said that, we realize that the real tragedy would be if he wasn’t here at all. But the truth is- he is here with us and we have a new “normal” that is pretty awesome. We are absolutely making the very best of our current situation by creating new traditions and habits, however small they may seem. For example, Calvin and Tyson still love to watch baseball and basketball together in Tyson’s bed, and sometimes, if he’s lucky, Calvin will make him watch a YouTube video of a Hotwheels demonstration and believe me, you haven’t lived until you’ve seen one of these videos😉 Abren adores Tyson just like Cal does. And just like his big brother, Abe loves to dance. He shrugs his shoulders up and down when he sees Tyson and Tyson will shrug his shoulders back in response. It’s amazing to see them bond and communicate without saying a word. ❤️ The kids love to put on a show for Tyson with some breakdancing after dinner. We laugh pretty hard at the two of them. At the start of Tyson’s illness when he was eventually unable to use his arms to give us hugs, he and Cal (who was two at the time) came up with something they called “twisties”. They’d put their foreheads together and twist, or sort of rock side to side and that was their way of giving hugs and having something special between them. Anyway, Cal taught Abe how to do it and now they both do twisties with Tyson. So sweet. Abren and Tyson also have another cute way of communicating with each other. Tyson blinks his eyes rapidly at Abe, and then opens them wide, and then makes a kiss-face, and Abe mimics every step. It is so cute (and it’s pretty good exercise for Tyson, too!). Tyson has such a special relationship with both of the boys.
As I’m typing this, I peeked into the bedroom and spied this happening…Abe has Tyson watching Meghan Trainor and Bruno Mars videos on YouTube. ❤️😂
Calvin played indoor Winter soccer and just finished his last game of Spring baseball. He is a very good athlete (gets that from his mom and dad 😉) and had the opportunity to play with the six year olds this season which meant that he coaches pitch rather than have the kids hit off of a tee. He did really well! (The infield looks a little crowded but this video should make you laugh)
Unfortunately, I was unable to get Tyson to any of the games (the logistics are just too exhausting for Tyson at the moment), so I would FaceTime him during one of Cal’s at-bats so that he could still be there in our adaptive way. Sometimes it feels as though he and I are just smiling our way through this incredible pain, and I suppose we really are. These baseball games and soccer games are extremely difficult for both of us to handle. Tyson has to sit at home when all he wants in the world is to be there with all of us and to coach Calvin’s team. I, on the other hand, am with Cal at these games and my heart actually feels like it’s breaking as I look around at all of the other fathers and their sons. In fact, after the first baseball game this Spring, I came home and cried to Tyson. Sometimes the pain of not having him physically by my side for everything is just too much. I want to do these things with him. Tyson and I haven’t had a chance to be a real family for more than three months after becoming parents. We always talked about having children and daydreamed about all of the amazing things we would do as a family like travel, go to the beach, go camping, and play sports, to name a few. No one plans for this to happen to them and to be honest, if i were to list all of the things we cannot do or the dreams we’ve set aside both individually and as a family as a result of this illness, the list would be endless. But what’s beautiful here is that Tyson and I both know that this stage in our life is only temporary. We enjoy our time together with the kids and laugh every single day. We try not to focus on the sadness or the things we’re missing out on. We know that what matters are all of the wonderful things we CAN do together and as a family. What matters is how we show Tyson our unwavering love and support so that he never loses sight of what he’s fighting for. We are his motivation and he is ours. ❤️
Of course I cannot leave the house without having a nurse here for Tyson which isn’t a big deal. I have groceries delivered and try to make our backyard as fun for the boys as possible in lieu of trips to the playground or the beach.
We have wonderful friends here that we’ve met through the daycare. They help us to make sure Cal attends every birthday party and today, for example, he’s at Island Beach with his buddy for the day! (That’s Cal on the right) With everyone’s support and our effort here at home, Cal and Abe have a pretty normal life despite everything that’s going on. That has always been a priority for Tyson and me.
We naturally experience moments of intense frustration, anger and dispair and sometimes these moments linger for a few days. Despite my efforts to protect Tyson from any stress or upsetting issues that demand attention, he seems to always know when I’m about to break down. Unfortunately, I have to fight for certain aspects of his care. It’s clear that it is not a question of whether or not Tyson will get better, it’s more of a question of when and how. I honestly don’t worry about him, it’s just a matter of keeping everything in tact too support him that’s proven to be a challenge. He hates to see me have to deal with so much and often says how he wishes he had a voice so that he could take on some of the burden and speak for US rather than me have to do it alone. I am Tyson’s wife and for me, that means I am his voice, his coach, his cheerleader, his friend, his nurse, and his protector. The responsibilities and the worry feel very heavy at times. He tells me how strong I am and how he wouldn’t be able to do what I do to keep things together. I tell him that I’m in awe of his strength; I couldn’t do what he does. I wouldn’t be able to watch other people hold my kids and not be able to play with them or speak with them. Despite our circumstances, he is still very much my husband and my protector. We make decisions together and we support each other. One thing this illness cannot take from us is the love that we have for one another. We are in these roles because we can handle them and we continue to carry each other. ❤️
Many of you may have read recently of the major restructuring that is underway at Ralph Lauren. In an effort to rebuild and revamp the company, they have unfortunately made the decision to lay off roughly 1,000 full-time employees. This makes up about 8% of all of the 15,000 full-time employees. Last week, I was a part of that 8%. Naturally, I am extremely devastated. I have worked for RL for the past 13 years and it has truly been a part of my identity. It is where I met my husband. It also took me to places like Nantucket and Aspen, which I was fortunate enough to call “home” for a while. Aside from the nostalgia aspect of leaving RL, this change has obviously added a tremendous amount of stress to an already overwhelming situation with Tyson’s medical condition. Almost every day is difficult enough as it is and there are mounds of things I need to tackle on Tyson’s behalf to ensure he has all systems in place for his road to recovery. Adding a layoff into the mix is certainly not ideal and is poorly timed. However, I’ve resolved that I cannot get upset over something I cannot change; all I can do is figure out how to move forward. We will take this as a blessing in disguise. Tyson needs me here with him to help in his recovery. For example, I can be more present in each PT session and we can work more consistently on the vent weaning. I want to be clear that I fully understand the need for restructuring and Tyson and I will be forever grateful for everything Ralph Lauren has done for us. We have had a tremendous amount of support from our RL family over the past five years that without, I’m afraid to think of where we might be today. We will make the most of our time together and figure out a way to stay here and make this work for Tyson’s sake.
Father’s Day is Sunday and we will spend the day together and do what we can to make Tyson feel special and loved (I’m telling you now, it’ll probably involve a dance-off 😉). Happy Father’s Day to all of the dad’s out there and a special Happy Father’s Day to my dad and to my husband because these are two guys who go above and beyond to be the best dads around 😊. I’d be lost without you both!
Thank you all again for your prayers, positive vibes, and support. Hopefully, I will have a stem cell update for you in the near future!