My 16 year old won’t say I Love You

OG2: Warning… this is extremely personal. It definitely puts an exclamation point on personal finance being personal. I write this as I’m traveling out of town for the day so that my youngest can play in a golf tournament. Just so happens to be in an area of a favorite local brewery. It’s a challenge to type this and suppress my tears from the public eye.

Back in our first post, The Why of FI Old Guys, I referenced that OG and I independently arrived at the same decision that we needed to retire as soon as possible in January 2018. What I didn’t elaborate upon was the details behind that realization.

My 16 year old son will never say I Love You.

 

My oldest son is severely disabled. We have no diagnosis, no name, no crowd of like minded folks to rally with. He’s simply, globally physically and mentally retarded. Now, before someone gets their PC-ness all bound up, that term IS the clinical diagnosis. It’s kind of a catch all to, ‘we don’t know what’s up’. We spent 5 years of testing and sending his blood all over the country, only to come up empty handed.

My realization came when he started High School last year. The system is such that he can attend until he’s 21. Thus, he will ‘graduate’ in June 2025. That’s less that 6 years away. As he has gotten older, it has become nearly impossible to find people to care for him at his size and level of disability. After he ages out of school, it makes no sense for me to work a full time job, just to pay for another person’s salary to care for him. Thus, how do I escape the rat race AND provide a home life that is sustainable, fun and not too limiting.

The Facts

My wife’s pregnancy was picture perfect. We did everything by the book. My wife has never smoked, done drugs and wasn’t much of a drinker. One evening while out to dinner and reconnecting from her latest business travels, she commented that she didn’t feel well. It turns out she was pregnant and poof, we leapt into a whole new world. We were good with this prospect, as we had discussed when to start a family and the timing was within our plan. On Christmas Eve, we welcomed our first child. I don’t know how to describe the hours following his birth other than this: If every person could capture the euphoria I felt at that moment, there would be no war, no strife, no hatred. Everything was right and perfect and nothing could go wrong.

 

When Peyton was 3 months old, in the wee hours of the morning, he woke us up with a horrible scream. When we scooped him up out of his crib, he was breathing, but not with it. We rushed him to the hospital where they immediately said he was seizing and his core temperature had dipped into the 80s. They whisked him away under what they called a french fry lamp to warm him up and ushered us off into a quiet, secluded room. It wasn’t until the priest arrived, that I realized they had put us there, alone, to prepare for his passing. Though no fault of his own, I yelled at the priest when he offered support, saying ‘we won’t be needing you today!’. Peyton seized all morning. They eventually managed to get him stabilized and transferred us to another hospital. After several days and a litany of tests, we were sent home with the promise that this was a one off event.

 

For background, my wife and I didn’t grow up around other infants, nor did we babysit. We were terrified as new parents, as we honestly had no clue what were were doing, despite all of the books and classes we attended. Therefore, we were slow on the uptake that our son was missing milestones. No babbling, sitting up was late and crawling was more of a very strange scooching, pirate looking maneuver. At 1 years old, he started all sorts of therapies. OT, PT, etc. Progress was painfully slow, if at all. But we managed.

Do we do this again?

We had no answers. All the genetic testing revealed no clues. We were paralyzed in debating whether or not to have another child. With lots of family & medical consultation and prayer, we moved forward. #2 was the same as #1 in the beginning, loud and never sleeping through the night, but all was normal. When #2 was 3 months old, Peyton got sick and started seizing regularly. He was diagnosed with Flu and RSV and admitted to the Pediatric Intensive Care Unit.  The seizures were regular, all the machines in the hospital were beeping and alarming non-stop. It was a constant vigil for my wife and I to talk to him, assure him as best we could and constantly beg for medical assistance just to keep him alive.

Sidebar: This was my first view into the notion that someone always has it worse, no matter how truly terrifying your current situation may be. There were several infants in the PICU who were all alone. They never had a parent or visitor to comfort them. There was only the purity and generosity of some nurses on staff to look after them.

After a couple of weeks in the PICU, the head of neurology for some bizarre reason began to be hostile. They kicked us out of the McDonald’s room we had been staying in and he basically said there was nothing he could do and we had to go. One of the crazy side effects of this event was that Peyton had gone blind. Despite an Optometrist coming in and confirming that Peyton could not see, this a$$hat actually said to us, ‘how do you know he could ever see?’. Turns out, if you spin a wheel with pictures on it, you cannot help but try to track it with your eyes. So a fluttering of the eyes cannot be consciously stopped by a child. Well, Peyton’s eyes never moved. Nonetheless, we were then told we would be pushed out. Ironically, with all of the procedures in place, we were then harassed by Child Protective Services to prove we could take care of him. This included demonstrating that we could feed him. Not knowing his infectious condition, we had to send our 3 month old away to live with grandparents in another state, while we figured out how to manage Peyton at home. 

There we were, Peyton’s 3rd birthday and missing our second son’s first Christmas as he was in NC with our parents.

Fortunately, his eye sight came back within a month and our other son returned home. Life moved on. #2 learned to walk on time at one, while Peyton at 4 was still scooching around on the floor. The plus was that he was easy to contain. This walking thing was all new to us. Four years of parenting and all of a sudden we had a tornado on our hands with #2.

Where we are Today

Peyton is basically a one year old in a sixteen year old’s body. He doesn’t speak, he doesn’t know how to chew food and he isn’t potty trained. Each of those three has its own irony. We took this picture for his 16th birthday at a ChickfilA drive-thru on a Sunday (they’re closed). It could have only been funnier if I had managed to get the mascot cow to join us.

He doesn’t speak, but he screams. I mean, Mariah Carey, breaking glass screams. Sometimes this can go on for hours. He’s just like a baby. You have no idea why he screams. It could be he’s hungry, has gas or just wants to yell. You cannot have a conversation when he screams, you cannot hear the TV, you cannot talk on the phone. You can hear him out on the street when I’m working in the yard. This is where having a 4,100 sqft house is essential. People need their sanity and space. This is one of many reasons we cannot travel with him. We cannot live in an apartment, condo or townhouse. We cannot take him to a hotel.

He doesn’t know how to chew food, nor does he drink fluids. (he used to drain a sippy cup, but he lost and never regained this skill after the illness at 3yo). This is truly strange, because just like an infant, he puts everything in his mouth and bites down/chews on it. He’s 16, yet all of his toys are those intended for a baby. We’ve gotten really efficient with his food. He’ll eat anything. We have 2 Instapots and 6 pots. I’ll spend an entire day prepping a month’s worth of food. Beef with pasta, mac & cheese, tandoori with rice, cheesy enchiladas, etc. The key is the food processor and fluids (water, milk). I basically grind it down to a baby food consistency. Because he doesn’t drink, all of his fluids come from his food. This is probably one of the reasons he doesn’t tolerate heat at all. I mean, 30 minutes on a bus at 80 degrees and he looks like a limp noodle.

He still wears a diaper. And not just one. There’s the pullup, with basically a maxi-pad insert added. On top of that, we wrap him up in a tabbed diaper. All of this in an attempt to keep it contained. He won’t release unless he’s in bed. So it all waits until nap or bedtime. These things weren’t designed for a tsunami. We probably still have leaks 3-4 times a week. That means changing the sheets and wiping down the plastic bed cover. When he got too big for a crib, I rigged up a bunk bed that basically is an adult size crib with a door. Not to be too gross, but imagine what it’s like when its not pee that leaks. Yeah, it’s like someone had a finger-paint contest with poop… everywhere!

Before he learned to walk, he was getting too heavy to carry up and down the stairs. So we remodeled ⅓ of the first floor so he had a bedroom and a full bath. It was designed so we could install a lift, which would take him from the bed to the shower. This is the mac daddy shower. 6’x6’, lots of shower heads and tile all around. Our youngest used it as his personal water park in the winter. It’s a godsend when things get really messy.

Now, he can “walk”. It’s hard to describe. It’s a mashup of Beavis and Butthead’s walking style, blending with the Walking Dead. It’s very unstable. His head and body are not on the same page, and he falls down from losing his balance…a lot. You can watch his toes trying to grip the floor like a monkey, for added stability. He has zero safety awareness, so our first floor is devoid of anything he can hurt himself with. No lamps, pictures, decorative items, etc. We had a custom island built that has sliding doors. This keeps him out of the super dangerous kitchen.

Ironically, he’s always been adept at locks. Baby gates, door locks, you name it. When people visit (which is extremely rare), they always puzzle over the 2nd deadbolt lock at the top of the exterior doors. The assumption is that we are overly mindful of security. Nope, it’s so Petyon doesn’t let himself out of the house. I’m not sure what we’ll do if he is ever is tall enough to reach the second top dead bolt lock. Speaking of which, we are lucky in that he has remained small. #2 is already several inches taller and 50% heavier than Peyton, despite their 3 year difference in age.

 

There’s a laundry list of other challenges that abound with Peyton. Dental work requires going to the hospital for general anesthesia. Trying to give him a haircut is like trying to paint a masterpiece while riding a horse, because he doesn’t know to stay still. He’s lucky I haven’t given him the Van Goh treatment with those clippers. I could go on and on, but you get the idea that day to day tasks are much more of a mountain when it comes to Peyton.

Yet, in all of this poop show, Peyton is happy. He smiles and laughs. I often joke that he’s much easier to manage than #2 a lot of the time.

What about FI?

All of this backstory to bring us to present day. A large portion of the FI community focuses on ‘Net Worth’. My retort is that it is unlikely you’ll sell physical assets (house, car, jewelry) to pay for day to day expenses. Thus, net worth has a very limited value for me. I focus on liquid worth. Those assets (stocks, bonds, pension), that will be what we spend in retirement. That is my FI number. We’re at $1.4M, with our FI being $3M liquid. This probably sounds excessive to most. But I ask you understand the number.

Generational Wealth

We fully expect that we will outlive Petyon. Think about that. For most parents, their greatest fear is outliving their children. Our greatest fear is that we are unable to physically take care of him as there is no facility designed for him and no one who will care for him the way we do/will.

That being said, we need a financial architecture that will allow his brother to step in and care for him, without concern for money or a job if we are unable to take care of Peyton for any reason.

It also means, when I retire in 2025, we will move to Charleston and live in a VERY expensive house. Why? Because we need to live some place that feels like a resort. A marsh view, a boatable dock. A neighborhood that has everything we need. Grocery, pharmacy, entertainment, you name it, all accessible by golf cart. Travel with Peyton is nearly impossible. So we need a home that is everything anyone could ever want and not feel the need to leave. We believe we have found that in Daniel Island.

That’s basically it. My biggest why of FI.

Without saying a word, Petyon has taught us much more than if he were any different or normal.

My son will never tell me he loves me. That just means we’ll have to say we love him twice as much to make up for it.

This Post Has 28 Comments

  1. Powerful story. Thanks for sharing. You sound like great parents to Peyton! I’m sure it’s not easy but in the end love is all that matters. Even though he can’t say it I’m sure you know it’s there.

    1. Thank you for the kind words.

  2. Hi OG2,

    This was such a raw and honest post. It’s not easy sharing our struggles, and I commend you for your bravery in doing so. I feel for you—I have friends and family members with similar challenges with their children.

    By sharing your story, you’re helping others feel less alone. It’s true: while Peyton will never say I love you, he teaches all of us that love comes in many forms.

    1. Thank you Chrissy.

  3. Thank you for sharing. Justin had told me some about your son but I had no idea it was this severe. You and your wife are great parents. He smiles and laughs, so you know he loves you.

  4. Kids change everything, and it’s great how you have such a clear vision of why you’re working towards FI. Thank you for sharing your story. And your dream house in Charleston sounds amazing 🙂

  5. Thank you so much for writing and sharing this. Peyton is amazing, as is everything you’ve done for him. I know this isn’t about the money, but you’ve powerfully illustrated why personal finance is so personal. I hope the home on Daniel Island is everything you need it to be.

  6. This must have been incredibly hard to write, but thank you so much for sharing. Peyton has a great smile and it’s clear he has a wonderful family who loves him so much.

  7. Bless Peyton and you guys for taking care of him and thinking so much about the future.

    I like to think that God gives only the most capable people to take care of those who need the most help.

    If you ever want to share your story and your FI why on Financial Samurai, please let me know.

    I am a father to a young boy as well, and I’m not sure what he may need in the future given his vision may have issues.

    Sam

    1. Thank you FS. We have no qualms about sharing our story!

  8. Oh my! Thank you for sharing this with us. You painted quite the picture with your words. What a marvel that boy, and what marvels you & your wife are for your endless care. I pray you get to your FI number quickly and the house you need. I will also just pray for you all.

    He’s got a sweet, sweet smile.

  9. We have friends and family with children who have similar, though less severe in some ways, challenges as Peyton. I know talking about it can only scratch the surface of how scary and tough it is when you’re facing it but even just this bit you’ve shared shows you’re doing so much for him, he’s so very lucky to have you as parents and that you’re able to be there and care for him as well as you do.

  10. Thank you for sharing your story. I love his smile and all the love you surround him with is the source of that happiness. You are great parents and I will be cheering for you guys to reach that FI number and make all your plans a reality

  11. Wow, thanks for sharing your story. Your choices make a lot of sense based on your kids. My brother has autism and my sister and I know we’ll care for him after my parents die, but “care for” by comparison will be so basic compared to you guys. We considered Daniel Island when we were moving, but ended up in Davidson. It’s such a beautiful spot. Do you already have a house there?

    1. Not yet. It depends on when/if we sell the beach house in correlation with when I retire.

  12. Wow. You guys sound like amazing parents. Thanks for sharing such deeply personal information.

  13. Wow thanks so much for sharing! It really puts everything into perspective reading a story like this.

    I really feel your love, pain and dreams from reading this, and I look forward to reading all about your amazing house on Daniel Island very soon.

    Very inspirational, thank you

  14. What a powerful story. I have friends who have a similar child, they moved out of state to be able to better care for him.

  15. Wow. Thank you for sharing and for being the people you are. If ever anyone needed some perspective, a quick read through of this post will smack ’em right in the noggin’. I have a feeling this will be sticking with many folks who won’t know how to reply. As it definitely will with me.

  16. This was such a powerful story . I’m speechless at the moment but I just wanted to say thank you for sharing . It’s very helpful for other families going to the same thing to read and for others to Learn from. I was in the education field as a teacher so the story definitely is touching . Thank you.

  17. I have a 27-year-old perfectly normal son who hasn’t talked to me in two years. And it’s really sad. So, in a way, you’re still fortunate. Thanks for sharing.

  18. Wow, touching story! Peyton is lucky to have you, no question about it!

  19. Thank you so much for sharing yours and Peytons story. I prayed for all 4 of you. May he always be surrounded by love and affection and care.

  20. And a suggestion if Peyton grow up tall enough to reach the second dead bolt, you can put a number lock on the door. (not sure of there’s a 2 way number lock though)

  21. I’m assuming that you are already hooked up with the Home and Community Based Waiver? Also, regarding the tsunami when Peyton gets into bed, have you tried to use an external catheter (also known as a condom catheter)? If he can tolerate having a condom catheter on with a collection bag, he will probably actually be more comfortable and with less skin problems due to the wetting with urine. My heart goes out to Peyton, you and son #2.

  22. Just want to give you and your family a big virtual hug. Your situation is surely difficult to live on a daily basis but the love for your sons helps overcome it. Our situation doesn’t even compare but we have the same goal for becoming FI. One my daughters has autism, she is functional but she has a long road before gaining independence from us if she ever do. We share the same fear that she outlive us. Thanks for sharing!

  23. Your son has a beautiful smile. Thank you for sharing your touching story. I would like to tell you that there are other families out there also struggling with disabled children with no diagnosis. Our normally developing son became catatonic at age 15, unable to move. He lost the ability to eat, drink, talk or walk. Doctors could not find the cause so he was treated with electroconvulsive therapy for years, kind of like restarting a computer. That enabled him to regain his motor abilities but he was still very disabled. He wore diapers and barely spoke. He developed seizures and many side effects from the treatments. We also had a neurologist become hostile like yours did – they don’t like not having answers.

    We continued to look for answers. We went to another state for another opinion and lived at the Ronald McDonald House for 8 months. We were lucky to not get kicked out like your family did. We ended up moving and my husband was fortunate to have an employer who would let him work remotely. But the neurologist who we thought would help lost interest. We kept searching and discovered our son had inflammation in his innate immune system which is not well understood. He eventually had some neuromodulatory treatments which helped some. We continued to search more and try other treatments. He had his exome sequenced with no answers. Since mainstream medicine gave up on our son, most of the help we have received has been from integrative doctors. This is typically not covered by insurance but when thinking about long term care for a disabled family member we decided it was worth some financial risk. Some have not helped but some have. Our son is improving and now has a part time job.

    I encourage you to keep looking for help for your son. There is the undiagnosed disease network but my guess is that is similar to what you already did. There is increasing numbers of families dealing with mystery illnesses that mystify conventional medicine. Our son’s illness was suspected to be autoimmune but he didn’t have the usual antibodies. He is not unique. There is a book called “Shadow Syndromes” that describes one family’s story with an undiagnosed illness but also gives some information about other families also struggling with inflammation based illnesses.. Dr. Mark Hyman from the Cleveland Clinic has a network of functional medicine doctors that deal with unusual cases. There are many online summits about various topics. This past weekend I watched “Regain Your Brain”. The information is targeted to Alzheimers but some of it generalizes to other illnesses. I learned about the work of Dr. Norman Doidge whose most recent book is entitled “The Brain’s Way of Healing”.

    I am only on Facebook so I can connect with other parents and I have learned a great deal from them. There must be many groups for epilepsy. If you post your story on one, you may find other families like yours. We have been on this journey for 10 years and we don’t know what the future holds. In Michigan where we live, disabled students can attend school until age 26. There are resources here that we initially didn’t know about – such as respite care through the county, and reimbursement from the state for the care I provide to our son. Every family I have met is worried about the future when they can no longer care for their disabled child. You have done an amazing job modifying your house and life to accommodate your son. You are an inspiration to me. I wish you and your family the best.

Leave a Reply

Close Menu