Raising a child with PANDAS can cripple a marriage–some marriages are even destroyed. Although my husband and I are working to rekindle our marriage after 12 years of upheaval associated with having a raging, aggressive and obstinate PANS child, I must admit that at one point I didn’t know if our marriage would survive.
There are only two words that accurately described my home when my son, Aidan, was flaring.
Aidan existed only in a fight or flight state. My daughter was a human punching bag. My oldest had zero tolerance for Aidan’s rages and responded in ‘kind’ – angrily and aggressively.
I was a full-time, untrained referee, parole officer, behavior coach, risk manager and counselor wrapped up into one frazzled, exasperated – and if I’m going to be really honest – pissed-off embodiment of a mom.
This was my life. Every day. All day. For yeeeaaars.
When I wasn’t trying to prevent situations that would trigger Aidan, I was scrambling to calm him down and keep everyone, including him, safe. His mood would switch in a split second, and he would go from zero to 60 in no time over something inconsequential. Rarely did he even remember what he was upset about by the end of the tantrum, which was often greeted by the beginning of the next.
Aidan’s rages, aggressions and destruction consumed me. My body held all the tension and I always ached. I was barely surviving the days, and sex was the last thing on my mind come evening time—or at anytime, really.
So, are you in the mood?
Oh, the dreaded question after a day of PANS flaring. If I say no, then he’s disappointed. If I say yes, then he spends the rest of the evening until we go to bed anticipating a good romp that likely wouldn’t happen.
Let’s face it. What have you read so far in my post that remotely says sexy, intimate, or for a good time call…?
Exactly. Nuttin’. Right there (no puns intended) is where the steamy bedroom scene ends.
I had been at war with my son all day, and tell me, does a soldier ever come off the battlefield thinking about sex? Not being in the military, I don’t know the answer. But I sure knew that I wasn’t taking any more bullets at the end of my daily tour of duty.
We were rather ineffective communicators about our sex drive dichotomy. Our ‘leave me alone vs. lead me on’ encounters did little to bring us closer together.
So, we saw a counselor. After rattling on for a few minutes about our home situation and why we were there, she used an analogy that I still remember today.
“Couples need to have sex at least once a week,” she said. Out of the corner of my eye, I see my husband’s head nod up and down ever so slightly.
Yeah, I knew she was right about that. Sex wasn’t an issue before Aidan began turning our home upside down. After all, he was born exactly 38 weeks after Valentine’s Day 2004.
But she kept talking. “Just like you change your sheets once a week, you need to have sex once a week.”
“Whoa-whoa-whoa,” I said. “Stop right there. Sheets? Sex? Once a week? Lady, we don’t change our sheets once a month!” After a couple of sessions, however, I realized that what my husband wanted to share with me wasn’t necessarily a night to remember, but simple, back-to-basics intimacy. Holding hands, wrapping me in his arms, sweet kisses — some of the tender ways he wooed me many moons ago.
I honestly do not have the answers to any intimacy issues that raising a child with PANDAS disease creates. A sex therapist I am not. All I can offer are some insights based on what I experienced. Had someone told me then what I know now, I don’t think the 12 years that Aidan was sick would have been so stressful on our marriage. We all know that hindsight is 20/20, so with “perfect” vision I share these thoughts.
- Believe in healing: Believe that your child WILL heal as a result of the research you are doing and the leads you are following. It may take years, which to you will feel like a lifetime. Even still, I must believe that healing is the inevitable outcome for our children. You must believe this also.
- Remember this pain is not forever: If you believe in healing, then you must know that the pain your family and marriage are enduring now will not last forever. While it may last for longer than you think you can endure, it will
NOT last forever.
- Go easy on yourselves: Don’t beat yourselves up. Remind yourselves that you are doing the best you can with what you have. That is all one can ask of oneself.
- Try to laugh: Let your guard down with your spouse and try to find some humor in the lousy cards you’ve been dealt. Sometimes lightening the mood a little is all it takes.
- Let time stand still: If even for just a few minutes a couple of times a week, be intentional and connect with your spouse. Set aside the every day strains and go back in time to before the war began.
I completely understand the reality of raising a child with PANS or PANDAS. Aidan’s journey pushed us to the edge more times than I care to remember. I also know that Aidan’s illness and, thankfully, his recovery taught me not only how strong my family is, but how dedicated my husband is to his wife and children.
Try not to go down the same road we did — laugh a little, hold hands, let your guard down with one another. Who knows? Maybe you’ll soon have a reason to change your sheets weekly.
MJ Keatts is a mom of three – one of whom inspired her to start this blog. A journalist by trade, minimalist at heart, and a stunt girl in her dreams, MJ proudly admits that she’s learned more from her kids and husband than she could ever teach them herself. She loves to laugh – especially at herself – and one day hopes to amaze her husband and be ready on time.