Being a parent is a great privilege AND an exhausting job. When you have a child with a rare disease or disability, that exhaustion doubles. As parents and caregivers, we hesitate to ask for help. We put our needs last because no one can take care of our child as we do. But the reality is, if we don’t get the occasional help, the alternative can be much worse. Our mental health suffers, and so can our relationships with friends, family, and our spouse.
My husband and I have three children, and our middle child has Rett Syndrome. She takes 18 doses of medicine a day, uses a wheelchair, and has a feeding tube. To ask someone else to take on that responsibility gives me extreme anxiety. Early on, I recognized that we needed to have a circle of people we could trust to care for our daughter. My husband and I need to be able to step away for a trip, have a date night, and spend some quality time with each of our children. However, the pandemic put a stop to our date nights and vacations. The longer that I went without leaving my daughter, the more anxious I became at the thought of it.
My husband and I finally planned a trip away to a B&B. I hated leaving my daughter, but I knew that I desperately needed a break and some alone time with my husband. Our marriage was good, but our routine was mostly about the kids.
So I began the prep work and even started a new devotional about anxiety. I should be “anxious for nothing,” but I come from a long line of worriers. I went over routines with my in-laws, made charts, called the school nurse and teachers about things to look for, stocked all supplies, etc. It was a lot, and I second-guessed my decision the entire time. BUT I did all the hard things, annoyed everyone with my nagging, and my hubby and I left for a romantic getaway.
It was glorious! I must admit that my worry and anxiety were right below the surface the entire time, but I desperately needed rest and a chance to recharge. I read, took naps, bubble baths, and had great conversations with my husband. We enjoy each other’s company, and it was so refreshing to be able to give all of our attention to the other without interruption. We needed those days to be about us and not about the kids.
Back home, everyone was happy and safe. We missed the kids, and they had a chance to miss us. I came back a better mom and a better wife.
It isn’t easy to trust others and not let the what-ifs take over, but you MUST put on your oxygen mask first. Sometimes it’s easier to say that you are okay rather than ask for help.
However, you can become isolated to the point that you are comfortable. You insist on doing it all but become resentful. If you are married, prioritizing your marriage and spouse is essential. Otherwise, you grow apart instead of growing together. Your partner and your children deserve a happy and balanced mom.
Let people in, and accept help. Planning for your absence takes time, and so does trust, but your sanity is worth it.
It takes a village to raise a child, so find your people. In return, you are giving someone the chance to get to know your amazing family and gain a new perspective.
You will ALWAYS be the best person to care for your family, but don’t let fear and guilt prevent you from taking care of yourself. Even Superman needs a break.
