We are living what I would call the Chronic Lifestyle. Basically, many of our daily choices revolve around the limitations and requirements of the chronic illnesses of my husband. We are trying to live this lifestyle with joy, with varying success. Outings, finances, meals, daily schedule revolve around his needs as much as around our five beautiful children.
So how does our day typically look? We get up at the crack of dawn so he can do all his tests and take all his medications. While he's out walking the dog, I make a simple breakfast of peanut butter on toast that I pray he can digest and a drink with a special kind of laxative stirred in. The laxative isn't meant for daily use, but the alternative is a rock hard stomach full of food that won't digest. Then he takes a sandwich and a few snacks (nothing fibre dense as it binds, which rules out pretty much all fruit) for lunch and heads to work for the day. He checks to make sure he has change for some kind of liquid sugar in case his blood sugar plummets (a rare but vicious reality as he spends most of his time with high blood sugars). At work, he always makes sure to station himself close to a bathroom in case his stomach can't handle the sandwich he had for lunch and he has to vomit. For a man who loves to eat, I suspect this must be the most brutal part. Every bite of food he eats is a calculated risk. Will this stay down? Will his stomach bloat so much it presses on other organs, causing shooting pain? While he is at work, we maintain our usually routine, having protein dense meals (which he can't eat) in his absence. I try to devise a meal that everyone can eat, but lately I've been serving the kids a meal before he gets home so they can have more of the protein and fibre he simply can't digest. After they've gone to bed, he has his own supper of soup, usually from a can. I negotiate labels for lower sodium, no whole grains, no chunks of meat, no cruciferous vegetables. Usually a pureed soup or the rare soup with rice. We go to bed as early as we can so he has the energy to face the next day.
Every month he has a myriad of specialist appointments. There's the doctor who is treating his diabetic retinopathy, his endochrinologist, his gastrointestinal specialist, the diabetic clinic, not to mention the frequent visits to our family doctor for refills of the panoply of medications that keep him barely functioning. There are all the blood requisitions, scopes, EKGs, eye tests, and more. Scarcely a week goes by when he isn't rushing back and forth to another appointment. Even at his appointments, he's answering work emails and fielding calls to make sure his absence doesn't cause problems. Waiting rooms become a satellite office so as little time as possible is lost. Every extra dollar is counted not just to pay all our regular bills, but to make sure we have enough for the co-pay on the various prescriptions he needs to survive.
For all the daily suffering he endures, he maintains a rich spiritual life. I find his devotion and prayer life inspiring. My own St. Joseph, enduring whatever must be endured so I can concentrate on the business of mothering our gifts from God. I know there are days when it's all too much, but still he picks himself up and keeps going. He doesn't have much energy, but what he has he devotes to our kids. When he is with them, he does his best to be their loving, silly, playful Daddy. He tucks them in at night, reads to them, sings to them. Even though I can see the lines of pain and exhaustion straining his face, he covers over all of it with a genuine smile as he soaks in their exuberance and love. Even if the rest of his life is spent just like it is right now, I know his legacy with our kids with be one of love and fun. He may never be "better", but to them he will always be Daddy. Not "my Daddy, who is very sick" or "my Daddy, who is too tired to play", just... Daddy.