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How We Come Together as a Family to Care for my Chronically Ill Son

When I was pregnant with my first son, I had a daughter in preschool. One day, as I was leaving her classroom and asking about her day, another mom approached me. She said, “I just want to tell you; if they both cry at the same time, console her first. The baby won’t know the difference, but she will.” We had never spoken before; she didn’t say anything else, and she didn’t offer an explanation. 

But I thought a lot about her words. And when my son was born, I followed her advice. I’m now fifteen years and four kids into my parenting journey and I still believe that was the best parenting advice I have ever received. 

While advice in general tends to flow freely, particularly between moms, no one really addresses one of the greatest challenges in parenting – time management. Specifically, how to divide your time carefully amongst your children. Maternal instincts usually guide us toward taking care of the neediest child first but her advice helped me gain a new perspective on my parenting priorities, and appreciate just how valuable advice is from someone who has already traveled that same path.

Eventually, I had children #’s 3 and 4 and, well, I had to do a bit more balancing. And with my fourth child, not only was there a lack of reading material on “how to divide time evenly amongst four children,” but he was also born with a rare genetic disease – which threw a few more balls in the air for me to juggle. 

The hospital visits started. The medication routine began. The time spent on the phone with insurance, specialists, and resources – this was all suddenly a daily occurrence. My fourth child became my full-time job. 

My other children were not getting the best version of me, and they certainly weren’t receiving as much attention as my youngest. The circumstances were out of my control and I felt helpless like they were “getting the short end of the stick,” as the saying goes. There just was not enough mom to go around, and it was pretty obvious that having a sick child at home was affecting them. 

Parents, we are not the only ones that have to adjust to a child’s illness or disability. Life changes for the entire family. Making our special needs child feel well and comfortable requires extra attention, and their siblings will feel neglected or have the pressure of unfair expectations placed onto them. In our personal situation, it wasn’t just the parents neglecting our older children, but they were neglecting each other as well. 

The stress from having these new changes in the family can be overwhelming. My unsolicited advice to you is to be mindful that time spent with your sick child is less time spent with the others. They might be feeling invisible to you or demanding attention. It’s our job as their parents to include them, and allow them an opportunity to feel pride and love in helping their brother or sister.

I understand first-hand how not easy it is to establish a balance between the needs of your chronically ill child and those of your other children. Throw into the mix that I’m also a single mother and I think I may have reached a new level of unbalance. Regardless of the chaos, I try to focus on a few simple choices that make a big difference for our little family:

Spend some time with each child individually. This could be penciled into your calendar as a monthly date. Earned as a reward for being patient while mommy takes a phone call or for helping to prepare dinner or measure out medication.

Develop a special relationship with each one of your children. If you have one child that is an avid reader, set aside a few moments at bedtime to read a chapter in their favorite book together. If music or dance is their thing, establish a routine where you blast music and do the “cooking dance” at dinnertime. How you choose to develop that relationship should be personal to you and your child.

Hold family meetings. It’s important that the entire family has honest information about the diagnosis. You don’t want them to overhear anything from other family members or healthcare providers because that could cause trust issues and make them feel disconnected. Your children should have a “safe place” to ask questions and talk openly. Perhaps it’s a Friday night pizza meeting where you choose a topic and all talk casually or, if your child/ren are more reserved, maybe it’s just a picnic outside with the two of you. 

Every family will adjust to the new normal and embrace and show love for each other. There is no right way or wrong way. These siblings will live and grow together. It’s up to the family to determine their individual balances and design strategies to support the chronically ill child to thrive and be resilient.

The ultimate goal is to build internal strength and coping skills in all members of your family. Many factors will influence this process, including the course of the chronic condition and the support and resources available to the child, their siblings, and the rest of the family. So, how do you build coping skills, you’re wondering? Similar to the advice that I received from the mom at preschool – focus on the child who truly needs you right then. It’s honestly as simple as that.

Watch for signs of distress, unusual behavior, or demands for attention and do everything you can to show them that you are there for them. This may be easier said than done; especially if you are newly navigating through this path of chronic illness. But it will all fall into place and, as a result, your entire family will learn about their strengths and limitations. Remember to talk openly, and discover new ways to solve problems, which fosters mastery and pride. 

And, always, always trust your instincts. You’ve got this.

What are some things you do to balance time between each kid, medical appointments, work, etc? Join me in The UpBeat Facebook group to share your thoughts!

photo courtesy of @shegotbrave

MEET OUR COLUMNIST, GRACE

Grace’s unique journey has inspired her to speak from the heart, sharing her struggles and strengths. She is a domestic violence survivor and single mom of four, her youngest living with Tuberous Sclerosis. Despite these hardships, Grace always manages to find positivity and humor in life’s everyday challenges. When she’s not writing engaging and oh-so-relatable columns for The UpBeat, you can find her snuggling with her babies or constructing something fabulous with either a sewing machine or massive amounts of dough and a pie pan. 

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