Tomorrow Might Be Worse- Love Today!

Having a chronic illness, or two, is like Weight Watchers for my energy system: everything I do costs energy points, and I only have a set number of points to spend each day. Every single action that my body takes, from the moment I wake until the moment I sleep, takes a certain amount of energy points. When I get to the end of the points, that's all there is. There's nothing left. And no amount of rest will replenish the energy points. Unlike the real Weight Watchers, I can't cheat and just spend a little bit more energy. The tank is depleted and that's it. Sometimes the tank of energy is empty by noon, sometimes I have enough to get through until 8:30pm. It all depends on what type of activities I spend my energy on during the day.

Things I never used to think about now drain me. Going grocery shopping costs me a lot of energy points. Because my kids have special needs, we spend a lot of time in doctors' and therapists' offices, and sitting costs a lot of points. When I sit still, the chronic pain that I have throbs and flares. I hate sitting still. It's excruciating. Making a phone call costs points. Having lunch with a friend costs a lot! I love being with friends, they make my heart sing. So although I refuse to give that up, I have to ration my points for the day accordingly. I know that after meeting a friend, I won't have enough energy for anything else that day. Listening to music with lyrics costs a lot of me energy points, because chronic illness has made my brain a thick, dull muscle that has forgotten how to flex. When I listen to music with lyrics, my brain tries to understand what the song is saying, which takes a huge amount of focus. When I'm driving, I can't listen to music with lyrics or I won't be able to focus on driving. And while we're on the subject of driving, that activity probably costs me the most points. There is so much going on when you drive a car, so many things you have to think about and pay attention to all at times. AND you have to SIT to drive, which we've already established is very difficult for me. Driving is the most exhausting activity that I do. If I drive a lot in one day, it takes me several days to recover.

When you have a chronic illness, in the back of your head you're calculating energy points constantly. If I have to take a kiddo to therapy, and sit in the waiting room and wait, I shouldn't plan to go grocery shopping that day. If I have a meeting with the school, cancel all other plans the day before and the day after, because stress sucks out all my energy points. If I have to have any conversations with other humans at any point during the day, deduct points. Being social is exhausting. I love it, but it's exhausting.

Not only do I have to figure out the logistics of life with four kids and two dogs, but I also have to always make sure I'm maintaining a positive balance of energy points. If I mess up, or don't plan well, or something unexpected happens, I may not have enough energy to snuggle with my little girl and read her books before she falls asleep. Or I may not be able to go to my yoga class, because even the fun things cost points. I don't have an endless supply of energy anymore. Which is hard for healthy people to wrap their heads around, I get that. People who are "health-challenged" have to count their energy points all day, every day, in order to get everything done that they need to.

Having a chronic illness feels like treading water. You never get to float, you're always working hard to survive life's demands. Some days it's easier than others to tread water while the seas are glassy and warm, but you're still working at it. On tough days, there is seaweed wrapped tightly around your ankles, pulling you down as you do your best to catch your breath in between the waves that roll over your head.

Always working. Never floating. Nothing is ever easy, nothing ever gets taken for granted. Which, if you think about it, is a pretty cool gift that chronic illness gives me. Chronic illness makes me appreciate everything. Chronic illness is unpredictable, and I never know if tomorrow will be worse than today, so during my "today's" I do everything I can to be happy and healthy and enjoy life. I don't know if this is the best day I'll have all week, so if I have energy to see a friend today, I'm going to grab that opportunity! If I have energy to get groceries AND walk the dogs, I'm doing it! And while I do it, I'll be rejoicing that although I feel like I'm dragging my body through quicksand- even on this good day- I'm outside in the fresh air, using my legs and enjoying my puppies. If I have the energy to write, today I will! Because I don't know what I'll feel like tomorrow. Tomorrow might be worse than today.

This is why being a friend with a chronic illness is difficult: you want to be able to commit to something and follow through, you want your friends to be able to count on you. But sometimes you have spent too many energy points dealing with life's everyday stress, and you don't have the capacity to pull yourself together and muster the strength for one more conversation. Being a parent with a chronic illness is the worst. Sometimes I'm so fatigued I find myself snapping at my kids when there's no reason. No reason other than I spent all my energy points before they got home from school, so now parenting seems completely daunting and impossible.

Often when someone has chronic illness, they look fine. My mom told me over the weekend that although she knows I don't feel it, I look vibrant, healthy, put together. What a nice thing to say! And what a tricky, sneaky thing for chronic illness to do to someone. I have a friend who has a chronic illness also, and we agree that we should come up with a spot system. On days when we feel only medium-horrible, we would wear purple spots on our skin. On super bad days, the spots would be green, etc. That way, how we look would resemble how we actually feel. Then the world might be more understanding if I say, "You know, I just can't go out for lunch this week, because I spent all my energy points dealing with my kid's school about his IEP, and my spots are FUSCHIA today!"

People with chronic illness get it. If my friend with chronic illness knows I've been out of town for the weekend, she also understands we won't be meeting at the pancake restaurant this week. Instead, she texts (Notice, she doesn't call, because that's too exhausting for both of us!) to see how I am and if I am recuperating from the trip.

Each person has their own energy point system, and their own spot system. Unfortunately, these systems are invisible to the naked eye, so it is vital that we never, ever, ever judge other people. You never know what someone else is dealing with. Sometimes the energy points are all used up, and your friend with chronic illness will disappoint you. Sometimes your friend with chronic illness has puce-colored spots and just can't keep your plans. Sometimes your Mama with chronic illness had to take you to a very long, very far away, doctor's appointment for your special eyes, and so Mama is running on fumes and doesn't have the normal patience she usually has.

Just know that although this chronic illness demands a lot- a lot of care, attention, calculating, energy- I won't let it take over my life. I will save up my energy points to have pancakes with you. I will ration my energy to read you bedtime books and snuggle with you. I will wait for rainbow-colored-spot days to do laundry AND clean the bathrooms. Chronic illness demands a lot, but you learn to manage it the best you can. Sometimes it's unpredictable and surprising and difficult. But it's important to maintain an attitude of gratitude in order to find the small gifts even on the fuschia-spot days.

My Valentine

We used to do everything together. We were inseparable, my Valentine and me. For the years before kids, we would go to the grocery store together. Take walks together. Go to movies and out to dinner together. Visit coffee shops and book stores together. ‘Together’ was our favorite way to be.

In the years since expanding our beautiful, chaotic family, we barely see each other. With the demands of hectic work and family schedules, we struggle to carve time out to enjoy each other. Life happens. Life is busy and messy. But when given the opportunity, ‘together’ is still our favorite way to be, and my Valentine is my favorite person in the world. I think that is something to be celebrated.

Twenty-seven years ago, my family moved into the house next door to Alex’s. He is a couple years older than me, so our paths didn’t cross very often in high school. My bedroom faced Alex’s, and every so often I would hear his (very) loud music and think huh, that’s funny. I like that band too! I listen to that music too! Once when I got up the nerve to actually talk to him, he pretty quickly shut me down and we went back to The Ignoring Phase.

1994-ish

 After I graduated from high school, I spent the summer working at Blockbuster Video. Alex worked there also. Once in a while we would chat. I noticed Alex brought books to work that he was reading, and they were books I liked. I kept seeing how many similarities we had, and he kind of crept into my heart. He was funny and kind. He was interesting. I could see he was good. Just a good person. And he had cute curly hair and amazing blue eyes.

I finally got Alex to take me to a movie- “Four Weddings and a Funeral.” Since we lived next door to each other, I walked across the yard to let Alex drive us to our movie in his tiny blue car. He drove like a maniac (that hasn’t changed), and kept a quarter in his mouth for the toll (which was gross but oddly endearing), but somehow I fell in love with him anyway.

I was house sitting for family friends, so Alex and I stayed up all night after the movie, just talking. We just clicked. It was the most amazing feeling I’d ever felt. We talked and laughed. All night. I almost killed him because I didn’t know he was allergic to hazelnuts and made him try Nutella and he had an allergic reaction. Ah, young love. I went home the next day and told my Dad that talking to Alex was like talking to my best friend from childhood. He says now that he thought, “Uh oh. Here we go.”

We spent the next four years living in different states, going to school and trying to be together as much as possible. It was torture, being apart. Somehow our relationship survived, and we made some pretty cool memories along the way. And the rest is history…

2000

What’s so interesting is that I still like Alex. After having pretty torturous roommate experiences in college, I was convinced I was doomed to not like anyone that I would ever live with. Alex and I have spent the last 23 years being together as much as possible. And I still like him. Liking someone is different than loving them. You can love someone and truly hate being around him. So of course I love Alex, but it’s a gift to still like the person you love, after all that life has thrown at us over the past two decades.

While entrenched in the chaos of trying to help our twin micro-preemies survive, I read a statistic that said most marriages with multiples end in divorce, and if those multiples are preemies, you’d better just start packing your bags now. Because no marriage can survive that.

HA! Take THAT, stupid statistic! The only constant in my life, is my Valentine. Through absolutely every horror and struggle we’ve dealt with over the past 23 years, Alex is strength, love, steadfast perseverance. We have experienced things that most couples don’t ever even have to fathom. Four preemies, surgeries, illnesses, moves, job transitions, four kiddos with special needs…and through it all, he keeps stepping up. Every time I say I have a new thing we need to try for the kids because it may help them, no matter how quacky it sounds, Alex listens to me. He gives me a chance to explain to him why this new (sometimes crazy) idea could be one to improve our kiddos’ lives. He always supports me, even if he thinks I’ve gone bananas. He is reasonable and fair, and always wants to see his kids succeed, thrive, and grow.

There have been dark, low, horrible times, don’t get me wrong. Our life together is by no means perfect. There have been times (more times than two people should have to experience) when we have looked at each other over a NICU isolette with terror and raw panic in our eyes, afraid of losing our precious new baby. There has been unknown—where will we live, where will Alex work, can we make it on one salary, how will we take care of twins, how will we help our kids with their unique needs, how can we be advocates for FOUR kids, how will we maintain our relationship during all these years of sleep deprivation and total chaos…there are intense and powerful worries that we wake up to every single day. There are times when we are screaming and crying because we don’t know how we will survive the anger that spews from our children during their rages. There is disappointment and exhaustion when we put our kids’ special needs ahead of our own, again and again and again. There is stress about how to logistically get all the kids everything they need to be healthy and happy, when there are just two of us and so many needy little ones. There is the frustration and desperation when we see our children floundering at school with no effective help in sight. There is financial worry; we worry about how to take care of everything everyone needs on one salary. There are health scares. Trips to the ER. Illnesses. Late night fevers. Owies to kiss and bandaid. Cars and dishwashers that break, bills that have to be paid. An endless monotony of annoying life distractions.

Love isn't always magical and pretty. Sometimes love gets buried under the mountain of dirty, messy, gritty, sucky life stuff. But true love is always there, steady and sure, waiting to be dusted off to come back into the light. True love is helping your wife take a shower after her third C-section, because her organs started shutting down and she's in so much pain she can't breathe. True love is instinctively catching your son's vomit in your open hand while he hurls it out of his body at the speed of light. True love is sitting with your wife while she is wrenched with worry about the latest struggle a kid is having. True love is changing poopy diapers and being covered in spit up and not having slept more than 3 hours in two days. True love is taking your toddler twins on an outing so your wife can have a moment to rest. True love is letting your little girl paint your toenails fluorescent pink. True love is popping your teens' zits and squishing a Q-tip in 8 little ears because they love the sound of having their ears "cleaned." True love is searching for (and finding!) a job in the area because your kids are barely hanging on in the environment they know, and to move them would mean major setbacks. True love is making your wife a gourmet dinner after a hard day at work. True love shines through the mess of life, like a bud escaping the soil in spring. 

Despite the mess of our chaos, once in a while, we find each other again. We catch each other’s eye and, after all this time, can read each other’s thoughts. I know when Alex’s look says, “Can you believe this kid??” or “Help, I’m about to lose my mind!” or “Did you shower today?” Once in while we find time to be together, just us. And we are always amazed at how much we like being together. Even after all the chaos of the past twenty-three years. Even after all the worry that weighs us down every day. Even after the list of special needs and endless brainstorming about how to help our kids. Even after all the never-ending, soul-crushing, tear-producing stress of this life. Even after all that, Alex is my Valentine.

2015
You know what makes our marriage great? Respect. Love. Kindness. Hot chocolate doesn’t hurt, either. A couple weeks ago, I had had a very bad horrible terrible morning because of the stress of getting the kids out the door for school. I also was feeling like total crap physically. Alex had to leave early for a doctor’s appointment. I was sitting in my sewing room, working on a weighted blanket, when Alex came home to get ready for work. In his hand, he had a cup of Panera hot chocolate for me. He knows this is one of my favorite treats of all time. He thought about me, and went out of his way to do something sweet and unexpected for me. This is who I knew he was, twenty-three years ago. This is who he still is. This is why he is my Valentine.

The way Alex loves his kids is also why he is my Valentine. The way he can go from slogging through math homework with one kid who has a learning disability to looking for a Barbie shoe for another, to laughing over YouTube videos with one more, to taking yet another one to therapy…this man. He just keeps showing up, you know? I’m sorry to say it, but I hear about a lot of Daddies who just refuse to show up. They can’t or won’t be there for what their family needs. Not my Valentine. It’s hard, it’s stressful, it’s exhausting, much of the time life really stinks, but my Valentine keeps showing up for us, day in, day out. Even when he can’t take another millisecond of the chaos that is our life, he regroups, he rethinks, he figures out how to be here for all of us. Emotionally and physically. When I break, he is strong. When he falters, I’m here for him to lean on.

Recently one of the kids’ therapists said to me that most families would have been torn apart by the level of stress our family has. By the rage some of our kids display, by the turmoil and strain our family has to deal with on a daily basis. By the PTSD we surely all suffer from because of our bag of special needs. She said the fact that our family is still together, and so loving toward each other, is a huge testament to who we are.

Sometimes I don’t know how we’re still together—all the odds are stacked high against us. But then I remember who I am, and who Alex is, and then I know why “we” work. Because we respect each other, even in the toughest moments. Because we try to be kind. Because we forgive. Because we are committed to each other. Because we remember the little things that make the other person happy- like hot chocolate after a terrible morning. Because when all is said and done, when we are blessed enough to find a precious few moments of less stress, we like each other more than any other humans on Earth. And because we like each other, we strive to love each other more every day. My Valentine is my rock, my heart, my joy.

Here’s to my Valentine. I thought I loved you when I married you, but the last 23 years have given me endless chances to see how much more amazing you are than I thought all those years ago, and to see what true love looks like up close. If you can come through all that we have, and still genuinely like and love each other, that’s something that should be celebrated.

Happy Valentine’s Day, my Valentine.

xoxo