One weekend in the spring of 2014, my five-year-old son spiked a little fever. By Monday, that fever had jumped to 105 degrees, and he could barely breathe.
My wife took him to the ER assuming we were going to get some medication to help with pneumonia. Instead, we learned that our son had acute lymphoblastic leukemia and would need three-and-a-half years of intensive treatment to save his life.
We were already in the midst of adopting a special needs daughter out of the foster system. I would detail her behavioral and emotional needs, but hopefully you can simply believe me when I say they were extensive. It’s like we were in a hurricane when a bomb went off.
Nearly six years later, by God’s grace, I cannot only say that all of my children are alive, but also that my marriage is strong.
The battle has often depleted us, but it hasn’t destroyed us.
From surviving to thriving
As parents, we’ve had our feet in multiple special needs circles. We see that the chronic care of an extraordinary family member can sap your soul and often end your marriage.
You spend so much time taking care of your little one and try to use your remaining energy to pour into the real needs of everyone else in the family.
“Self-care” seems like that cruel luxury afforded to “normal” families. But I’ve learned that an intentional tending to the mind, body, and soul have been the key to going beyond surviving into thriving as a special needs family.
You’ve heard it said and you ignore it. Let me say it again.
You need to take care of yourself, and you need to make sure your spouse is taking care of themselves.
Practical steps for daily living
I want to share with you a collection of thoughts for you to consider as a special needs parent. It’s not a list of more things to feel guilty about. These are practical thoughts on how you might take care of yourself so you can take care of your family:
• Be honest with your church. Seek out couples or families who can take on your family as a service opportunity. If you have people who genuinely volunteer, don’t feel obligated to pay them. There are people who know that they are serving Jesus by doing this, and you need to just let them.
• It tends to be the case that one spouse is better at being proactive about self-care than the other spouse. That proactive spouse needs to be helpful in encouraging and empowering the other spouse to carve out their time/practices. Then they need to give them the freedom to do what they want during that time. For me, self-care looks like rigorous exercise. To my wife, it often looks like getting space to get the house in order because she can’t relax otherwise. Both of our preferences feel like a chore to the other person, not self-care.
• One thing that’s been really helpful for me is to come up with a list of things I aim to do each day. My idea is that if I do these things the majority of days (not every day), then I am casting a majority of votes toward being the kind of person I want to be long term. My list consists of things I’m rock solid at doing, as well as some stretch goals. I don’t beat myself up when I don’t do them, but it’s a reminder to course correct. My current list:
- Pray.
- Spend time in the Word.
- Write one thing I’m grateful for each day.
- Intentionally encourage at least one person each day.
- Track my food. I switched to this instead of “eat clean” because, quite frankly, I don’t want to eat clean. I like ice cream.
- Learn something—anything at all, no matter how small.
- Journal. I do a five-year journal with a five-line summary of each day. It’s been incredibly rewarding as the years go by to see how the Lord changes hopeless situations.
- Have a midday prayer.
- Seek mindful rest: a short nap, even five minutes—anything—as long as I pay attention to it.
- Play.
(Rarely do I hit all of these. But at this point in my life, I usually hit a majority each day, and, by doing so, I am able to reinforce that my life is not in vain, that I am investing in my future self, and that I am not spiraling out of control.)
• It’s pretty crucial for me to get up before any of my kids. I take my first part of the day to do a little walk around my neighborhood, pray, read a little, and sip coffee in the quiet. It really changes how I’m ready to interact with my kids.
• If you’ve got the money, pay for someone to clean your house or do some other chore that frees up time/emotional energy. Sometimes, you might be able to barter with another special needs family. You watch their child for a couple of hours in exchange for them taking yours for a couple of hours. It won’t necessarily be twice as hard to watch two kids as one, and you get the benefit of a break.
• Batch things to get more time off. Batch cook meals to reduce prep for other nights. Batch your time for emails. Batch your errands as much as you can. Little things like this can free up considerable time and space in the long run.
• Learn to say no, and stop comparing yourself to “normal” families. You have an extra weight that you’re carrying—you cannot do everything that others can do.
• Remember, Jesus Christ himself took naps, got away, slept, etc. And as important as our special needs relatives are, I don’t think we can say that they are more important than the mission of redeeming the entire world.
This is a big list—don’t be overwhelmed.
Pick one or two things that might be easy for you to start with. Small adjustments over a long time make a big difference.
You’re not alone!
