I hadn’t really heard the word “respite” before E came along. I never really needed to know it. Suddenly, we’re applying for Medicaid waivers and seeking out home care companies for respite care for her. Tons of paperwork is required in order to get a couple of “free” hours a week, leaving her in the care of a qualified medical professional. The more I see the word on paper, the more I think about it.
It is hard to think of the reasons why we’re applying for respite care hours. We know at a basic level E may face a lifetime of medical problems, communication misunderstandings, behavior issues, incontinence, constant chewing, and many, many, many appointments. Divorce rates are sky high in special needs couples, depression runs rampant. Life will be difficult. Respite care hours will be necessary. Rest in general will be necessary but not always attainable.
Lately we’ve been needing a different kind of respite because are running ragged, but not directly because of Phelan-McDermid or 7q. For many weeks now we have had daily therapy appointments, late, late hours for Ben, sleep disruptions, and weekly travel to specialists. However, most of E’s specialists and therapists are taking vacation time to be with their families, so appointments have been few and far between. And, since our families are so far away and time off for a trip isn’t doable, we were simply home. Christmas brought us the gift of respite.
Our respite was wearing pajamas all day and leaving toys strewn all over the living room. E had nowhere to be and nothing to do other than be a baby. No poking or prodding, no long car drives, no therapies. She crawled and cuddled, squealed and slept, rested and relaxed.
Respite looked like a refrigerator filled with leftovers and fresh produce. We haven’t had the time or the energy to cook at home, and the produce would just spoil before we could finish it. Yet the last few days we’ve cooked so much that we have an abundance of leftovers. We’ve slow danced in the kitchen, tried new recipes, and refreshed our weary bodies with home cooked meals.
We are realizing more and more just how important self care is as we continue on this journey. This is a lifelong marathon, not a year-long sprint as we had hoped. We need to pace and take care of ourselves in order for E to be the best she can be. The more ragged we run, the less effective we will be. Our tempers will be shorter, our days will be longer, and our lights will be dimmer.
Friend, another thing that we are realizing is that we are not the only ones that need respite. I am absolutely positive that you do too. Living life, any life, can and will make you weary. I see the bags under your eyes, and I watch you press forward under the burdens that only you bear. I pray that you answer Christ’s calling to rest when you are heavy-laden. Often you won’t realize how heavy the burden that you’ve been carrying is until someone relieves you of it. So, whether it is all-day PJs, leftovers in the fridge, or falling fast asleep while sitting up… may you soon find your custom-tailored respite from life that only the ultimate Burden-Bearer can give.
“Come to me, all who labor and are heavy laden,
and I will give you rest.
Take my yoke upon you, and learn from me,
for I am gentle and lowly in heart, and you will find rest for your souls.
For my yoke is easy, and my burden is light.”
– Matthew 11:28-30