Jenny and Eliana

I wanted to give a special shout out specifically to Jenny and Eliana. I couldn't do this without either of them. Firstly, my wife Jenny is a saint.

She is kind, loving and supportive. She is my rock and one of the main reasons I keep going every day. She is the strongest person I have ever known. 

Everyone tells me how strong I am because this condition affects me physically and mentally. It is true that I have been through a lot but Jenny was 8 months pregnant with Eliana when I first got sick. Yet she came up to the hospital every day with a smile on her face.

She saw me at my worst but continued to stand by me. I am not perfect, and there were (and are) days that it is very frustrating to be around me. Yet she continues to love me through it all. 

She is also the most determined person that I know. When she wants something better, she will do anything to get it. 

I had no plans to ever get a masters degree in bilingual education but she convinced me to do it. It was not easy, but it allowed me to get a job at Los Andes University in Bogotá. Which I never could have dreamed would happen. It is the equivalent of working at Harvard University in the United States. 

I was not able to be present for Eliana's birth due to being sick but my mother in law was there for Jenny when I couldn't be. Jenny is very brave and a great mom to our daughter.

Jenny and I are very different in many ways, and we have our problems like any couple but, she has supported me through all of the trials and tribulations of life and there is no one who I would rather be with.

She is working hard to support our family while I can't. Even though I am currently looking for a home based job. I am forever grateful for her. 

She is not perfect but I never expected perfection. I love her despite her flaws. 

Now onto Eliana. She is the greatest joy of my life and the best thing I have ever done. My only regret is that I waited so long to have a child because I was scared of the responsibility of fatherhood. 

Eliana is kind, loving attentive and so very smart. I see her growing like a weed and learning new things every day. She has her moments like any typical 3 year old but overall we won the lottery with her. I love her to the moon and back. 

She treats me the same as any able bodied father and my limited mobility doesn't seem to bother her. I am very thankful for that. She also has a great sense of humor. She is stubborn as a mule sometimes but she gets that from me! Because Jenny is a lot of things but stubborn is not one of them. 

When I was 3 years old, I tried playing with my grandparents TV. It had big tactile buttons you could push. My parents constantly told me that I couldn't touch the TV. 

My parents entered the room hearing my screams of delight. I was with my grandfather (the father of my mother) and he let me push all the TV buttons that I wanted.

He went on to say, if he lived to be 100 years old he would never forget my screams of delight. I feel exactly the same way when I hear my daughter laughing.

Well that is all I wanted to say, Tyler 

Something to be thankful for

I wanted to write this to let you know how thankful I am for the little things like a supportive family and friends group.

You may not be aware of this, but back when I was much sicker and unable to take care of myself, we were at the point of putting me into what amounts to an adult daycare center where there are professionals who take care of you. 

What they do not provide is intensive therapy and rehab. So how you enter there is basically how you will stay. It is hard to make any progress. 

However, luckily I got to a point where we decided intensive therapy and rehab was the way to go. I am still not fully independent but I am making progress slowly but surely. Every small step forward is one step closer to returning to normality. 

I am very thankful for the help provided by my family and friends. I couldn't do this without you. I know one day, sooner or later I will be back to normal life again. I am slowly but surely beating this. Even if it takes me 4 more years, that is a blink of an eye in my total life span hopefully.

That's it for now, Tyler 

My anniversary of being out of the hospital

I recently decided that today is my two year anniversary of being released from the hospital. I honestly don't remember the exact date, so today is as good a day as any.

I have made slow, small progress but it's progress nonetheless. I am grateful for everyone and everything in my life. 

My speech is improving slowly but surely as is my balance and I am no longer on a liquid diet. I still need thickener in my liquids to prevent liquid from going straight to my lungs but honestly it is not so bad. It doesn't taste great but there are worse things out there. 

I can shower and dress myself and prepare my own food despite having limited mobility. I can enjoy being with my wife and daughter. 

I am a lucky guy and I am thankful for everything I can still do and continue to do.

That's all for now, Tyler 

Thoughts about each country I have lived in

Now that I am back to blogging regularly I thought that I would share with you the overall experiences I had in each country that I have lived in. I will try to go in chronological order starting with Australia the first place I lived that was not the USA. 

Australia was a nice place for a young kid to start living away from home. They spoke English and were very friendly. I still have some good friends there. The biggest downside was that it was expensive and far away from home. 

Next, I moved to New Zealand. Again, everyone was very nice and it was very beautiful but it was also expensive and far from home.

After that, I moved to Colombia where I met Jenny and spent the next 8 wonderful years. I still have many close friends there and honestly I don't know if I would have ever left but Jenny wanted to be closer to her family in Spain.

Colombia is a great place if you don't have kids but raising children there is expensive and the education and health care aren't the best not to mention the security issues and petty theft. 

After Colombia, we made a pit stop in China for two years (Jenny a little less) overall I enjoyed my life there and I loved the chance to go cashless and pay for everything via the phone. However, the pollution and overcrowding sucks not to mention the strict government control. If I had to do it all over again I would try Singapore instead.

After China, we made the move to Spain. I got sick shortly afterwards, but we are happy here close to my in laws and childcare. The government takes good care of you. You do pay more in taxes but Healthcare and education are paid for by the government. So, you receive a lot of benefits from the higher taxes you pay. 

The education system is good, security is good and Healthcare is also good. The life style is overall relaxing and we are happy here and not planning on moving anytime soon. 

The biggest downside is that I am far away from my family and friends. However, I knew that when I married Jenny. It was not a surprise. Luckily, my family and friends can come visit us any time or vis versa. 

That's it for now, Tyler 

Random Thoughts

Now that I am back to actively blogging more, I wanted to share some random thoughts with you. I enjoy this blog because I can express myself through the written word and I don't have to speak which I currently struggle with.

Now on to the blog. I am turning 40 this year and my brother's are turning 37 and 30. My parents will be turning 70 and Eliana 4.

It amazes me how fast time flies. Some days I feel 39,some days I feel 18 and others I feel 99. My body doesn't always respond to my brain. But I am slowly but surely getting back to normal life.

I am truly a lucky man to have a wife and daughter who love me and family and friends who do too. 

Just remember, none of us know how long we have and we will all die eventually, so make every day count.

That is really all I wanted to say. Short and sweet. 

Take care, Tyler 

A big thank you

I figured it was high time I thanked everyone who helped me when I was sick and I continues to do so. I couldn't do this without my friends and family being supportive financially and otherwise. I am truly a lucky person.

I want to especially single out Jenny, Eliana, my in laws and my parents and brothers. They have all been amazingly supportive throughout it all. 

Firstly, Jenny was 8 months pregnant when I got sick and I cannot imagine having to go through labor and delivery and having to deal with me being sick. She is the strongest person I know.

Secondly, my mom saw me at my worst when I was down to 112 lbs, on a liquid diet, wearing adult diapers because I couldn't control my bladder and I was having enemas and a cathater. Yet she stayed strong throughout it all.

My dad was my personal trainer while I was home in Texas. He was a huge help getting me into tip top shape. We went to the gym 5 days a week and I had a personal trainer named Michael. Between him and the stationary bike and swimming (until I fell down and broke my hand) I was in the best shape of my life. I felt 18 again.

My in laws have been amazingly supportive throughout all of this. Ferrying me to and from the doctor whenever I have appointments and taking care of Eliana. I am very lucky to have them. 

Eliana has also been great. She throws tantrums like any normal 3 year old. However, she is always eager to help me anytime I need it and she doesn't treat me any different than any able bodied father. I love her more than I can say and having her was the best thing I have ever done. 

I also want to thank all of the doctors and nurses and anyone who took care of me while I was sick. It has been a huge blessing that Spain has socialized medicine so I am not stuck paying medical bills for the rest of my life. I know they gave me the best care they could and for that I am thankful. 

I also want to thank my brother in law and two sister in laws. They have all been incredibly helpful with everything and I am very thankful for their support. 

I guess that's it for now, Tyler 

Current life goals

I wanted to update you dear readers on my current life goals. Goal number one is to be walking and talking normally again. It may seem simple but I can assure you that it is not. It is something that I used to take for granted but no longer.

Walking and talking normally really are miraculous. Secondly, I want to start working and being able to take care of my family financially so even if I have to do it from home. 

Thirdly, I want to give Jenny and Eliana the lives they deserve and I want to be the best husband and father that I can be. Both Jenny and Eliana have given me unconditional love and support (as have my family and friends) and I want to give some of that back. 

I am blessed and lucky beyond belief despite my physical challenges. I wouldn't change anything even if I could. Everything happens for a reason.

 I am very grateful to see another day and if I am lucky, I will have many more to come. However, even if I don't, I am thankful for the life I have already had. 

General Family Update

I realized that I have recently given you dear readers a general health update but I failed to mention my family! I want to rectify that.

First off, Eliana is 3 going on 30 haha. She is ready to be a teenager even though I am not ready yet. She is growing like a weed and recently got her own princess bed. No more kicking me at night.

Additionally, she loves her school, Teacher and classmates. This is great news because she will be there until she turns 18 haha.

She has been a great help to me with my limited mobility. She is kind and patient and she treats me like a normal bodied person. She throws her tantrums like any typical 3 year old but overall I love my daughter to pieces. 

She is completely spoiled rotten by her grandparents as she is the only biological grand child on either side. 

I am extremely lucky to have great in laws who help us anytime we need it and they have put up with a lot these past 4 years with my health stuff. 

My parents have also been amazing even though we don't get to see them as much as I would like due to the distance. They recently retired and moved to a lakeside cabin in the middle of nowhere. The perfect place for them to spend their retirement. They are living close to some friends so I am happy for them. 

Jenny is working hard and doing well as can be expected under the circumstances. She has put up with a lot over the past 4 years and I am luckier than I deserve to still have her by my side. She took in sickness and in health literally. There is no one who I would rather have by my side. I can't wait for the day I return to normal life and I can finally be the husband and father that I want to be, living a normal life. 

My brother's are also doing well and staying busy. I have been lucky to have their support. My grandmother (my dad's mom) is 88 and still going strong. I hope for a lot longer. She remembers all of the important dates in our lives and luckily we will get home this summer with Eliana to see her. She loves all of her kids, grand kids and great grand kids. We are lucky to have her.

I guess that is all for now. Take care, Tyler 

General health update

I figured it was time I gave everyone a general update on my health and progress. I will start by taking you through my health issues then I will share my progress with you. 

So it all started 4 years ago. I had recently arrived to Spain directly from China. Shortly after that, the valve that drains my excess brain fluid into my stomach failed. It had lasted 35 years but no longer.

I started having headaches and vomiting due to the increasing pressure on my brain. So I went to the hospital here in Pamplona. They initially tried to repair my old valve but it was too old to be saved.

So I ended up having 6 brain surgeries in Pamplona. But none were successful. I had one of my 4 ventricles in my brain block off. This necessitated a surgery to implant a stent on my brain to try and restore flow to the ventricle that blocked off. 

Due to the blocked ventricle, my left eye went crooked and I lost all my peripheral vision in the left eye. I was also on a total liquid diet at the time due to my facial paralysis (due to my shunt failure) I ended up losing weight until I was down to 112 lbs/52 kg.

The stent surgery failed. It was at this time they transferred me to Barcelona where they had more shunt experience. It was there that they removed all the previous hardware and implemented a second shunt. 

These two shunts have a technology that allows them to talk to each other so they avoid the previous problem I had with one shunt working and the other not. So now they work together instead of fighting against each other. 

I ended up having 6 additional brain surgeries in Barcelona bringing my total brain surgeries to 12. If you include my surgeries as I child I have now had 29 total surgeries.

After 6 months in and out of the hospital I was finally released to go home. I started going to speech therapy (my speech has been affected by the facial paralysis) and physical therapy 4 days a week trying to regain my balance. I can walk but not well. I use a walker or wheelchair to get around. But I am not paralyzed thank God.

I need thickener added to my liquids due to my swallowing being affected. But I can eat normally. No more liquid diet!

So none of this is ideal, I have lost a lot of my independence but I can shower normally and dress myself and do most things. So my condition is not perfect but it could be much worse. I am a lucky guy and I know with time and effort I will only continue to improve not get steadily worse. 

I have one more operation to go to correct my crooked left eye but it should be a piece of cake compared to what I have already been through. I have also regained all of the weight I lost in the hospital. 

I am also very lucky that Spain has good socialized medicine so I don't have to spend the rest of my life paying off medical bills. 

The most frustrating thing by far about my current condition is that my mind is healing faster than my body is. So, sometimes my brain will send a simple command to my body and it will not respond. It is frustrating having to relearn to walk and talk. They are simple things that I took for granted. But no longer. Your brain controls a ton of things that you do not even think about until you lose the ability to do them. I look forward to the day I will be independent again. 

So overall, I am happy and doing well. I am lucky to have supportive family and friends. Thank you all. I am also thankful every day for Jenny and Eliana. I love them both. 

March update

I figured that I would blog and let all of my dear readers know how I am doing. Health wise I am still stable and staying out of the hospital thank God. I still struggle with balance issues so I rely on a wheelchair or walker to get around. Everything else is coming together slowly but surely. My speech is still not perfect but it is improving with daily practice.

Eliana is growing like a weed and Jenny is working hard and treating me better than I deserve. I am a lucky guy. So overall, things are not perfect but they are headed in the right direction. 

Til next time, Tyler 

The doctors will operate on Monday

Edit: I wrote this initially in 2021 but I accidently saved it as a draft instead of publishing it. I apologize for the error and I have no surgeries planned for 2024 other than an eye surgury to correct and straighten my crooked left eye. 

So the plan is for me to have the brain surgery I detailed in another blog post on Monday. They have cancelled this surgery twice already so I'll believe when they actually have me on the table.

Obviously every brain surgery has risks and I'm not thrilled about this but as long as the doctors are more than 50% confident they will be successful, I want them to go ahead and try.

Why? Because this is my one shot at returning to a normal quality of life where I can work, take care of my family, walk, talk and eat normally.

If this surgery is not successful then they will put everything back the way it is now but that means that I'll have to come into the hospital 4 or 5 weeks out of the year for the rest of my life to be adjusted. I won't be able to work or live normally.

So needless to say, I am accepting the risks and I want this (hopefully) final surgery to work. 

Worst case scenario is that I die. That would be truly unfortunate for my family and friends. But I'm OK with that risk. The second worst outcome is that I will lose my memory, or my ability to walk, talk or eat. Honestly that would be worse than death for me. But I accept this risk also.

Now, if everything goes according to plan, they will fix me and I'll be back to normal in a week or so. I'm really hoping for this outcome. 

If you are the thoughts and prayers type of person, I want you to send them to my doctors. Give them steady hands and the wisdom to do everything they need to do.

I am looking forward to getting my life back and having many more years with my wife and daughter. I love them to the moon and back and I want nothing more than to be a normal husband and father.