What It's Like to Be a Mom With Chronic Illness and Have Kids With Chronic Illness

I have four kids. Katie (8 years old) has Ehlers-Danlos syndrome, asthma and a visual tracking disorder. Nano (6 years old) has Ehlers-Danlos syndrome, asthma and eczema. Anna (4 years old) has amblyopia, and Davy (2 years old) has Ehlers-Danlos syndrome, asthma, gastroesophageal reflux disorder (GERD), severe eczema, hypotonia, mild developmental delays and is a tubie graduate.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

And then there’s me, the source of my kids’ genes. I have Ehlers-Danlos syndrome, GERD, asthma, eczema, eosinophilic esophagitis, postural orthostatic tachycardia syndrome (POTS), unexplained sudden anaphylaxis episodes and PTSD. I’m what is referred to as a spoonie.

On the outside, we look like a “normal” family. But if you look a little deeper, you’ll see the chronic pain that affects Katie, Nano, Davy and me, the kitchen cupboard overflowing with medications, the ice packs stacked up in the fridge, the severe chronic fatigue and brain fog that surrounds me everyday, my walkers (a basic one I keep at home and one with a seat that I keep in the trunk of my van) for the days I have a hard time walking due to pain or weakness and a handicap parking placard stashed in the glove compartment of my minivan.

Between the five of us, we see specialists for GI, genetics, asthma and allergy, EDS, orthodontics, orthopedics, ophthalmology, pediatrics, occupational therapy and physical therapy.

We drive one and a half hours to most of our doctor appointments and often spend two or three days a week at appointments.

This is what my day planner looks like during an average month.

With so many medications and special needs in the home, it’s very important that I stay organized. The kids and I all have pill boxes that I fill weekly. I keep each child’s medications in a cosmetic type bag along with a list of what they are and their dosages. I also designed a medical binder so I can keep track of each one’s needs.  I had to learn all of this the hard way when I ended up spending the night in the hospital after an anaphylaxis event. It was then that I realized I was the only person who knew how to fully care for my kids’ medical needs, and I needed to be prepared for the next time I was away from the kids unexpectedly.

Being a mom of kids with chronic illness when I have special needs of my own is…well, let me put it this way: I’m freaking exhausted.

Let’s talk mom guilt for a minute. Every mom deals with this at some point, and mine consists of feeling guilty that my kids inherited my faulty genes plus feeling guilty that I can’t be the mom I want to be for my kids due to my chronic illnesses. I would love to be able to take my kids to the park and play with them outside, but thanks to my POTS, I get really sick if I’m outside for very long. I wish I could run around with my kids, but most days I have to tell them that they can only touch me gently because “mommy has owies.” For them it’s normal to see their mom frequently parenting from the couch and wearing braces on her knees, back, wrists, thumbs, etc.  I hate that that’s their normal.

The whole “put your oxygen mask on before you help someone else with theirs” thing… I’ve had to embrace it as my health has worsened over the last few years. That concept is hard for most moms because we tend to put our kids’ needs above our own, but if I don’t take care of myself, I literally can’t take care of my children.

On a typical day, I’m so exhausted by noon that I can barely put one foot in front of the other. At times, it’s been so bad that I’ve fallen on the floor and been unable to get back up. My speech gets slurred, and I have a hard time forming a compete sentence.

My younger sister recently began working for my family as a PCA or Personal Care Assistant for the three kids who have EDS. It’s hard for me to accept that I need help just to make it through the day and care for my kids because I want to be able to do it all myself. But since my sister became our PCA, my fatigue and pain levels have dropped quite a bit, and I’ve actually been able to enjoy my children more. For my kids’ sake, I have had to let go of my pride and accept that I need help functioning in day-to-day life.

Taking care of myself is not only important so I can continue to care for my kids, but also because they inherited EDS from me. They’re watching me to see how to live with this genetic disorder, and if I don’t model self-care, they won’t learn how important it is for them to do the same. Someday, they will probably need help getting through each day just like I do, and I need to teach them that it’s OK to ask for help and to accept it when it’s offered.

Being a special needs mom with special needs is hard, but not impossible.

Follow this journey on Sunshine and Spoons.

Lead Thinkstock photo via ChristenLola.