We’ve had a couple of rough weeks around my house with some health issues popping up for our adult son who is disabled. He has autism and cerebral palsy, is nonverbal, and now is blind in one eye. Retinal detachment, they think. We’re awaiting appointments to verify this diagnosis. He’s going to be 20 in just a few days.

First of all, I cannot believe that roly-poly baby who had leg rolls and chubby cheeks is now 20 years old, and I cannot understand how I could possibly have a 20-year-old for a kid when I’m only 25. As Ferris Beuller said, “Life moves pretty fast. If you don't stop and look around once in a while, you could miss it.” 

We struggled so much when I was pregnant, through Jamie’s birth, and the years following when we didn’t know what was wrong, but something clearly was. His diagnosis didn’t come for several years after his birth after we had exhausted all other possible diagnoses. Testing your baby for things that are terminal, or degenerative, causes a lot of stress, worry, and sleepless nights.

We’ve seen tons of doctors, specialists, therapists, and so many other people trying to get him to a spot where he was functioning at a higher level. He just hasn’t, and won’t ever, catch up to his peers. He functions as a toddler, somewhere between 12 and 18 months old. The best they can tell us, his IQ is roughly around 51, which means he has significant intellectual disability and cognitive impairment.

We go through these cycles of wishing things were different, wondering what our lives would be like if he were a normal functioning adult, and then coming right back to being satisfied with where we are because “things could always be worse” - which has kind of become our family motto. Glass half-full/silver-lining.

In just 3 short years, our youngest will be going off to college and she has told us in no uncertain terms, that she is moving out to go to a college far enough away that she won’t be able to live at home. Not because she is unhappy here, but because she’s ready to spread her wings and live her life on her own, which I completely understand and I’m so thankful for the independence she feels.

Her older brother, Jamie, will always live with us, as long we’re able to care for him in our home. I’ve always known this - even as he grew into a 5’8”, 130-pound man. Jamie will never be able to live on his own, and will always require care.

We shave his face, shower him, clean him up when he’s had an accident, dress him, brush his teeth, make his meals, help him eat, help him use the toilet, put his shoes and braces on, pretty much every aspect of daily life - we do for him. Think about all of the things that you taught your baby/toddler to do for themselves, and these are the things we do daily for Jamie, that he is incapable of doing for himself.

We have a caregiver that works 40 hours a week which allows us to work, but the rest of the time, the care falls to his dad and me. If he sleeps at least 10 hours a night, that’s another 58 hours a week that we are providing his care. We are always on call if anything comes up with his caregiver and she’s unable to come in. I am her backup since Joel is our main breadwinner.

I will always need to find a caregiver for Jamie if we want a night out with friends. Going on a trip without him means we have to alert our family who could step in if needed, and we have to have several layers of backup plans just in case he gets sick, or our caregiver has something come up. We don’t have the luxury of being able to leave all of our cares behind. The “cares” go with us everywhere we go.

Ireland and Scotland are on my bucket list, while Joel wants to see Monaco. I doubt we’ll ever get to any of these places because we have to be available for Jamie. I cannot imagine being out of the country away from him. Some have said we should travel out of the country anyway, and it just isn’t feasible for me. I doubt I would ever be able to enjoy myself. We went to NYC with our daughter this year and left Jamie at home for 4 nights and I spent a lot of the time stressed about being so far away from him. One of us needs to be available for him, and these trips aren’t ones either of us would want to take without the other.

Imagine having a toddler that you had to take care of for 20 years. Remember that mental and emotional load you carried around with you when your child was 12 months old? We have that every day. Every. Single. Day. It never stops, not even at night. He needs care then, too.

Finding a responsible caregiver, one that shows up on time, knows him, knows the job at hand, and fits into our household is not an easy task. We do our best to provide extra income and benefits to our caregiver because the current going rate for personal care is $15 an hour. That is not a liveable wage when rent is $1400/month.

We have options for other care as Joel and I age. Jamie’s doctor asked us what we thought about group homes as he transitions into “adult” care. It was never even an option we thought about. We have wondered what the next step for him is, but any option outside of our own home is daunting. They all come with concerning issues.

Group homes are notorious for abuse and neglect and if they are good group homes then they have waiting lists a mile long. Joel and I have always felt that we didn’t want to take advantage of the system and get help for Jamie that someone else might need more than he does. Day programs encourage getting out into the community, but that comes with the added benefit of contracting more colds and viruses during the time of Covid. Jamie is susceptible to chest infections so we keep him safe by limiting his contact with others who may not be as diligent as we are about protecting him.

I see a lot of my friends and family who are becoming empty nesters and while I normally don’t let it get me down, I have been feeling a bit of jealousy lately. We will never be empty-nesters. We will never know what it’s like to not have another person to care for. We will never know what retirement really is, playing golf when we want to, going to dinner without needing a caregiver to take over. It is draining and taxing some days.

I told my doctor I feel like I live at a heightened level of anxiety most days and have for the past 20 years. She said I needed to learn to relax. As if it were that easy. As if I don’t try. As if I don’t have a child who relies on me to decide everything for him every day, on top of all of the decisions and things I do for my neurotypical teenage daughter, my husband, and my business. Every. Damn. Day.

It is exhausting and I frequently need naps because my sleep cycle is disrupted by worry and anxiety. I hide it pretty well, but there are days when all I want to do is crawl into bed and not deal with anything for anyone. It is mentally and physically overwhelming. The exhaustion and stress are marching right across my face these days. There isn’t enough makeup to hide the effects of a lifetime of worry and stress.

But, we keep going. I try to make my - and their - lives happy, even on days when it really sucks. I make it worthy even on days we’ve gotten shitty news. I push myself to keep going because they need me. I think one of the things that I love about my life the most is that we appreciate the good days so much more. We try to always find the silver lining - because we’ve had it much worse.

Jamie functions at 18 - 24 months level.
Jamie functions at 18 - 24 months level.

Some of those first days of Jamie’s life were awful. We didn’t know if he’d live. We didn’t know what was wrong, failure to thrive diagnosis with no reason as to why. You just can’t know what that’s like unless you’ve experienced it - watching your baby struggle to do the most basic of things - eat. His cries were so weak and he couldn’t hold his head up until he was about 4 months old. He surprised us all by walking at 6 years old.

Being an empty-nester is something we may not get and if we do experience it, it would be for the worst reasons. It would mean that Joel and I are no longer capable of making decisions and/or incapable of physically caring for Jamie, or that Jamie is no longer with us. And while these things may happen eventually, and we have prepared for this situation with legal documents and plans, I cannot fathom a day when I wake up and I don’t have to make Jamie’s breakfast and get his meds set out, where Joel isn’t helping him get out of bed and head to the bathroom.

I have asked pretty much everyone I know who is a recent empty-nester what they do with all of their extra time, and most of them aren’t doing anything different. They are still getting up every day and going to work. They may be able to go to dinner at the drop of a hat or take an entire day to go play golf, but their lives didn’t really change that much.

We go into parenting thinking things will be special and normal and full of love. We picture snuggling our babies, watching them grow into toddlers learning to walk, pre-schoolers riding their bikes for the very first time, and all of the moments filled with pride right up to their Valedictorian speech at graduation. Very few baby books (and I read a shit ton of them when I was pregnant with Jamie) prepare us for the things that could go wrong. There is very little mention of specialists and scary diagnoses. They don’t tell you your baby may not know how to eat at birth, or may have or develop genetic abnormalities, or other physical, mental, and neurological difficulties.

Jamie on vacation at Lake Delevan, WI 2005
Jamie on vacation at Lake Delevan, WI 2005

Joel and I like to think we aren’t any different from our friends who have neurotypical kids, but the truth is we’re not the same. Some say they could never do this, and I don’t think that’s true. We each do what we can to make sure our kids thrive and give them what they need. But we do recognize that we are doing it for much longer than most. The difference is they get to move out of the baby phase and eventually have a break from the day-in/day-out parenting.

Medical equipment, walkers, wheelchairs, and shower chairs fill our house, along with toddler toys and Dr. Seuss books. The sounds of Laurie Berkner, The Backyardigans, and Dora still permeate our walls. We like to joke that Jamie is very particular about his music and cinema because he only likes certain shows and refuses to watch anything but what he wants to watch at that moment. Don't be bringing him toys besides what he likes because he will turn his nose up at them and toss them aside. He's fairly sassy and I swear he gets it from me.

Because I believe gratitude leads to happiness, I can’t end this without saying that Jamie is a beautiful soul, the sweetest boy who still asks for hugs and kisses from his mama. We are so lucky that he’s ours. And the icing on the cake is that he has my mama’s eyes. A little part of her in my kid is so special because she was gone before Jamie was even a thought for Joel and me.

And, honestly, our parenting journey has been all of those happy things, too. We’ve gotten a lot more baby time than most, and we’ve really loved every milestone that Riley hit because it was so new and exciting for us to experience it finally. And every time Jamie screams with joy, laughs until his whole body shakes, or smiles at me and leans in for a hug and a kiss, I know I’m so lucky to be his mom.

We will continue to take him on adventures and enjoy every moment we get with him. Our retirement will include Jamie. Empty nest be damned.

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